Before all this I had a full time job with a major supermarket chain here,I was a "fresh food people!!" I worked 40 hours a week and took home a pretty good wage,life was going along fairly smoothly.Bills were getting paid early there was no arrears and we even had a little bit of savings!
We've done it tough financially over the years,so to be seeing the light at the end of the tunnel was amazing,thru the late 80s, our mortgage interest rate was 17%!! On one wage with 2 little kids to provide for,yep times were tough,but the kids grew,another one was added and we were slowly starting to turn things around,then the company Robert worked for went bankrupt owing him heaps in wages and other payments.His superannuation wasn't paid into the super company,this was just before the government started the scheme to protect workers if this sort of thing happened,so all the money he should have had for retirement? Gone,lining someone elses pocket(The owner of the company,transferred everything into other peoples names and then reopened the business a few months later) We had to go on unemployment benefits while Robert looked for another job,then to add insult to injury the week before Christmas,although he was owed thousands,we received a cheque for $186! Yep,$186,you see the workers are way down the list of creditors to get paid what they're owed when receivers get called in,banks and other businesses get theirs first.
Anyway we slowly clawed our way out of that mess and eventually found the light switch to brighten the tunnel,it was a bloody long and massive tunnel and only one tiny light globe to show the way but bit by bit we were getting thru it.
The kids grew up,Adam went into the air force and got posted interstate,Sarah left home to set up her own home with Luke,so only David was home with us and we were going along quite happily,the tunnel was so short now we were almost ready to walk out of it,bright enough to need sunglasses.
Then MS struck,back in blackness,can't find the way out now,not even a match to strike to give a flash of light.
2 incomes down to 1 with all the expenses that still need to be paid,we've done it before we can do it again,but this time there's the extra expense of medication and all the vitamins and minerals reccomended .A change of diet might help.How much is all this antioxidant rich food? gluten free,dairy free,red meat free,the alternatives are so expensive,Has it made a difference?Am I any healthier? Don't think so,still having relapses,still have symptoms every day,still struggle.
MS doesn't just take a toll on your health,it crosses the board and spreads it's evil tentacles into every aspect of your life,it impacts in so many ways on the one with it and those closest to you.Drop a stone in a pond,see the splash? That's the person with MS,See the ripples? That's the people closest to you,MS is a nasty,insidious disease,that needs to be stopped,not delayed,not eased,STOPPED
Saturday 31 March 2012
I don't know....
I'm tired of being me,tired of the sadness and anger and fear that seems to be at the core of me.i wish I could dig right down and pull out all these negative painful emotions out and just be left with the good stuff.I want to be the kind of person people want to be around,I don't want to be sarcastic and cynical,negative and fearful,I don't want to be angry.
I don't know how to not be though,surely I wasn't born this way? Surely growing up there must have been some times I was happy and positive?
Why is it so easy for me to go down the sad path,the angry road,the fearful street.
I really wish I could just accept that I have MS and move on and live my life peacefully,but instead I have to fight against it every step of the way,trawling the internet looking for some miracle cure,a diet that has some magical power to turn things around and make me whole.A drug that will cure me not just delay things.
I wish I was the kind of person that can look on the bright side,find a silver lining in every cloud.When I see a cloud I just see rain or hail,thunder and lightning,I just see yet another storm on the horizon.
And seriously,what is the point of all this talking and soul searching?What is the point of knowing all this stuff about myself? All it does is make me feel even more miserable.
I am so scared of the future,my future and I know that the worst case scenario isn't necessarily what the future holds for me but I have declined so quickly in the last couple of years that I worry that it will be.
I wake up in the morning and check that everything is working like it was when I went to bed,I notice the tiniest little change in every part of me.I wonder if it's another relapse or whether it's just an increase of symptoms because of the weather,or maybe I'm a bit run down,or coming down with something or a myriad of other reasons that I haven't worked out what they all are yet.
I don't want to live this way,I don't know how not to.I don't know how not to be me.......
I don't know how to not be though,surely I wasn't born this way? Surely growing up there must have been some times I was happy and positive?
Why is it so easy for me to go down the sad path,the angry road,the fearful street.
I really wish I could just accept that I have MS and move on and live my life peacefully,but instead I have to fight against it every step of the way,trawling the internet looking for some miracle cure,a diet that has some magical power to turn things around and make me whole.A drug that will cure me not just delay things.
I wish I was the kind of person that can look on the bright side,find a silver lining in every cloud.When I see a cloud I just see rain or hail,thunder and lightning,I just see yet another storm on the horizon.
And seriously,what is the point of all this talking and soul searching?What is the point of knowing all this stuff about myself? All it does is make me feel even more miserable.
I am so scared of the future,my future and I know that the worst case scenario isn't necessarily what the future holds for me but I have declined so quickly in the last couple of years that I worry that it will be.
I wake up in the morning and check that everything is working like it was when I went to bed,I notice the tiniest little change in every part of me.I wonder if it's another relapse or whether it's just an increase of symptoms because of the weather,or maybe I'm a bit run down,or coming down with something or a myriad of other reasons that I haven't worked out what they all are yet.
I don't want to live this way,I don't know how not to.I don't know how not to be me.......
Thursday 29 March 2012
Saying nothing at all
I can not be someone I'm not.I can not pretend or try to fake my way thru life.I acknowledge and accept that I am not a positive,uplifting person,I always see the dark side,see the negatives,want to know the pit falls of anything.
I am not nor will ever be a cheer leader type of person(the uniform doesn't fit)
I have tried to change but have not succeeded,I do not want to be someone I'm not,I want to be me,faults and all.
I'm kind of stuck for what I actually want to say.think it best if I say nothing.
Ronan Keating sang "You say it best,when you say nothing at all" Maybe that should be my life motto
I am not nor will ever be a cheer leader type of person(the uniform doesn't fit)
I have tried to change but have not succeeded,I do not want to be someone I'm not,I want to be me,faults and all.
I'm kind of stuck for what I actually want to say.think it best if I say nothing.
Ronan Keating sang "You say it best,when you say nothing at all" Maybe that should be my life motto
Why I breathe
I'm in a really cruddy,funky,crappy yuck kind of mood and it's Thursday so I've been waiting for Grey's Anatomy to start hoping I'll cheer up a bit.Or otherwise something sad will happen and I'll have a good cry and get over what ever is bugging me.
Those bastard T.V. people have taken it off and put a frigging football game on instead!!! Come on,it's round 1 of a very long season,who cares? It's bad enough it's going to be on Friday night,Saturday afternoon and night,Sunday night,now you've got to steal Thursday night too? BASTARDS!!!
So maybe I need to blog something good in hopes I can push past this downer,Everything seems to be getting on top of me and my only good thing at the moment is my children.My awesome amazing children,they are the reason I breathe and continue to fight this shit.
I am so incredibly grateful that these 3 people came into my life and made it worth something,Sarah,Adam,David I love you.
Those bastard T.V. people have taken it off and put a frigging football game on instead!!! Come on,it's round 1 of a very long season,who cares? It's bad enough it's going to be on Friday night,Saturday afternoon and night,Sunday night,now you've got to steal Thursday night too? BASTARDS!!!
So maybe I need to blog something good in hopes I can push past this downer,Everything seems to be getting on top of me and my only good thing at the moment is my children.My awesome amazing children,they are the reason I breathe and continue to fight this shit.
I am so incredibly grateful that these 3 people came into my life and made it worth something,Sarah,Adam,David I love you.
Wednesday 28 March 2012
Meh
Not much to say today,in a bit of a slump,feeling like I need to close myself off again,being sociable is over rated.I think I prefer the loneliness.
Tuesday 27 March 2012
Yesterday
Woke up yesterday morning with this intense eye pain and a feeling of "grittiness" in it,It felt like I needed to take my eye out and wash underneath it.It had been a bit achy for a couple of days but I just thought it was another annoying MS symptom and hadn't bothered too much about it.
Yesterday though the pain began so excruciating and unbearable that I go worried,It was the same pain I had 4 weeks ago when I had the relapse and optic neuritis,the only difference this time was I didn't have the foggy fuzzy vision.
So my daughter came over,she was going to drive me somewhere else but my eye started tearing constantly and I had a steady stream runnimg down my cheek,so she took me to my GP instead.I'd only been on steroids so recently and I was sure it couldn't be a relapse again so soon,it had to be something stuck in my eye that I couldn't get out.
I sat in the car with my sunglasses on and a wet face washer pressed to my eye,I really just wanted to pull the awful thing out and throw it away,finally get in to see my doctor,he looks at my eye goes thru my notes and says "I think you need to go to the hospital" Wonderful!! Sarah had come over after she'd finished a night shift she needed to sleep now she's stuck with driving me to the hospital.
I really hate that this happens and I need to put other people out and get them to take me places,everyone says it's okay and their fine and okay with it but I still feel angry that I can't do it for myself anymore.
Anyway we get to the hospital,wait for a bit,finally get taken out the back area,Woo Hoo the good bit where you get to see someone!! Talk to another nurse,tell her exactly the same thing I've already told my GP and the triage nurse,show her the letter GP had written which I also showed the triage nurse(can't these people read?!) I see a doctor,explain everything to her,show her the letter,she looks at my eye gets me to read an eye chart,then I sit down and wait again,I get given 25mg of prednisolone ,just a bit more to add to the 25mg tablet I had at home and the 2 nurofen they gave me in the waiting room.
The neurology registrar shows up** He shakes my hand and tells me his name is Wilson!! Castaway is one of my favourite films,so there I am in the hospital eye hurting so bad and all I can think of is Tom Hanks standing on the raft screaming "Wilson! Wilson! Don't leave me Wilson!" as the ball floats away(and yes I do choke back tears whenever I see that part of the movie!)** I go thru the story again show him the letter,he starts checking out my eye,shining lights in it,getting me to look up and down,left and right,my poor eye is screaming in pain now and I'm sure it was crying for itself,Wilson! decides to consult with the eye specialist and my neurologist so I go and wait again.Bit more time passes,my neurologist shows up,more questions,more lights shone in my eye,more pain,still waiting on eye specialist so Wilson walks over to the eye clinic and shows him all my notes and gets his consult that way!! I think I like Wilson! My neurologist checks things out again and says "Do you get migraine?" Bingo!! Light bulb switched on.yes I do but I'm strange I get severe migraines but not often in my head, my back shoulders,neck sometimes my thigh,even my feet and my stomach where I throw up a lot but thankfully rarely in my head.I think I would cut it off if I had this pain in my head.So anyway they do a few more tests to definitely rule out MS as the cause and finally after 6 hours we're on our way back home,me with am eye patch to help rest my eye(anyone got a spare parrot!) Cue the pirate jokes! I am so grateful it's "just" a migraine,I was terrified I was going to need IV steroids,those things mess with me so badly. I asked them how do I know if this eye thing happens again how can I tell if it's a migraine again or an MS flare,if it affects my vision I go to the hospital it's the quickest way to see my neurologist,he said to me come here then you won't have to wait for an appointment! I like this guy! and Wilson! Just wish they looked a bit more like T.V.ER doctors!
So get home,have more drugs*my poor liver* David is annoyed at me cos I didn't ring him or leave a note.We didn't ring anyone cos what can they do? and it's no use worrying anyone 'til we know for sure what's happening,I mean all it would have been is I'm at the hospital don't know how long for don't know exactly what's wrong.Better to wait until I know for sure what's going on and i didn't leave a note cos when I left the house I wasn't planning on being out all day!
Today it's a lot better,probably all the drugs!,I'm now taking migraine tablets every 4 hours,which are making it bearable,and I feel a lot more human.
Hopefully life can get back to being about my usual MS struggles soon!! :o)
Yesterday though the pain began so excruciating and unbearable that I go worried,It was the same pain I had 4 weeks ago when I had the relapse and optic neuritis,the only difference this time was I didn't have the foggy fuzzy vision.
So my daughter came over,she was going to drive me somewhere else but my eye started tearing constantly and I had a steady stream runnimg down my cheek,so she took me to my GP instead.I'd only been on steroids so recently and I was sure it couldn't be a relapse again so soon,it had to be something stuck in my eye that I couldn't get out.
I sat in the car with my sunglasses on and a wet face washer pressed to my eye,I really just wanted to pull the awful thing out and throw it away,finally get in to see my doctor,he looks at my eye goes thru my notes and says "I think you need to go to the hospital" Wonderful!! Sarah had come over after she'd finished a night shift she needed to sleep now she's stuck with driving me to the hospital.
I really hate that this happens and I need to put other people out and get them to take me places,everyone says it's okay and their fine and okay with it but I still feel angry that I can't do it for myself anymore.
Anyway we get to the hospital,wait for a bit,finally get taken out the back area,Woo Hoo the good bit where you get to see someone!! Talk to another nurse,tell her exactly the same thing I've already told my GP and the triage nurse,show her the letter GP had written which I also showed the triage nurse(can't these people read?!) I see a doctor,explain everything to her,show her the letter,she looks at my eye gets me to read an eye chart,then I sit down and wait again,I get given 25mg of prednisolone ,just a bit more to add to the 25mg tablet I had at home and the 2 nurofen they gave me in the waiting room.
The neurology registrar shows up** He shakes my hand and tells me his name is Wilson!! Castaway is one of my favourite films,so there I am in the hospital eye hurting so bad and all I can think of is Tom Hanks standing on the raft screaming "Wilson! Wilson! Don't leave me Wilson!" as the ball floats away(and yes I do choke back tears whenever I see that part of the movie!)** I go thru the story again show him the letter,he starts checking out my eye,shining lights in it,getting me to look up and down,left and right,my poor eye is screaming in pain now and I'm sure it was crying for itself,Wilson! decides to consult with the eye specialist and my neurologist so I go and wait again.Bit more time passes,my neurologist shows up,more questions,more lights shone in my eye,more pain,still waiting on eye specialist so Wilson walks over to the eye clinic and shows him all my notes and gets his consult that way!! I think I like Wilson! My neurologist checks things out again and says "Do you get migraine?" Bingo!! Light bulb switched on.yes I do but I'm strange I get severe migraines but not often in my head, my back shoulders,neck sometimes my thigh,even my feet and my stomach where I throw up a lot but thankfully rarely in my head.I think I would cut it off if I had this pain in my head.So anyway they do a few more tests to definitely rule out MS as the cause and finally after 6 hours we're on our way back home,me with am eye patch to help rest my eye(anyone got a spare parrot!) Cue the pirate jokes! I am so grateful it's "just" a migraine,I was terrified I was going to need IV steroids,those things mess with me so badly. I asked them how do I know if this eye thing happens again how can I tell if it's a migraine again or an MS flare,if it affects my vision I go to the hospital it's the quickest way to see my neurologist,he said to me come here then you won't have to wait for an appointment! I like this guy! and Wilson! Just wish they looked a bit more like T.V.ER doctors!
So get home,have more drugs*my poor liver* David is annoyed at me cos I didn't ring him or leave a note.We didn't ring anyone cos what can they do? and it's no use worrying anyone 'til we know for sure what's happening,I mean all it would have been is I'm at the hospital don't know how long for don't know exactly what's wrong.Better to wait until I know for sure what's going on and i didn't leave a note cos when I left the house I wasn't planning on being out all day!
Today it's a lot better,probably all the drugs!,I'm now taking migraine tablets every 4 hours,which are making it bearable,and I feel a lot more human.
Hopefully life can get back to being about my usual MS struggles soon!! :o)
Sunday 25 March 2012
Blah again
I know I sound like a whingy,whiney baby.Of course I do,I live in this head with all these thoughts,I hate it I really do.Was it only a couple of days ago I was feeling so positive? Now I feel like I'm hanging on by my finger nails again,I bite my nails there's very little there to hang on with.
I don't really know what to say,I'm sad and I'm not thinking much just feeling sad.Not crying,not depressed...sad don't know why I'm so sad,I just am.
I don't really know what to say,I'm sad and I'm not thinking much just feeling sad.Not crying,not depressed...sad don't know why I'm so sad,I just am.
Friday 23 March 2012
Anger
When I first started this it was going to be a way to try to get my thoughts in order so I could maybe write my "story" for the MS magazine in my state. I messed up when I first set this up and set it to public,then when I realized I couldn't be bothered working out how to change it! Yes,I know I'm lazy!
Some where over the last couple of weeks though things have changed a bit,actually I've changed a bit,all right,a lot!
I think in writing out all those thoughts that didn't make sense,not worrying about punctuation and spelling and weather things sounded right or not,letting myself just think and type,I've somehow let myself let go of a lot of anger.
Oh wow have I been angry! At everyone.everything.at MS at doctors and nurses at disabilitySA at my work place the people I worked with,people I didn't know,people who helped me,people who didn't help me, Centrelink staff,I am still very angry at the place centrelink sent me too to assess my level of disability and what work I could do.Come on,you'd be angry too,It's an employment agency for people with disabilities.....with no access for people with disabilities,yep that's right no wheelchair access at all,just a very steep flight of stairs.To get in I had to go round to the side of the building and go through another company,then walk through their back offices to get where I needed to go,yep angry,justifiably so I think. I've been incredibly angry at God(still a bit iffy,on if there is one) and the church,and the people who spout all this love and crap but do nothing to help someone who they know who is sick and struggling and had their world turned upside down.Okay,I see the direction this is going in,I guess it's time to get this venom off my chest that I feel towards christians,specifically the ones I know.(Hmm,if hell's real then I am going to burn something fierce!) I used to go to church,I used to go to Bible study,I used to teach Sunday school!,but I never considered myself religious,to me that is following rules and regulations and my concept of God and Jesus wan't of follwing rules and regulations more of doing good and loving people and showing kindness and consideration where it was needed.Besides I could never come at preaching to people seemed a bit hypocritical to me seeing as I was(and am) far from perfect.Anyway couple of things happened at the church I was going to and I started to question myself and a lot of things so I stopped going.I still believed,still had my faith but didn't want it "tainted" (can't think of a better word) so didn't go to church anymore.Then life got in the way and I started to believe less and then I got MS.
When I first left hospital after that first attack with the iffy diagnosis and not being able to walk or move my foot ,or use a knife and fork or brush my hair blah,blah,blah,I was frightened,confused,worried,out of my mind with everything going on,my family had all those feeling too,plus that added burden of trying to help me process my feelings and all the physical things I couldn't do.
Poor Robert,what he some how he managed to cope with all this I will never know,he had his own feelings and worries,the kids,mine,all the stuff I normally did that still needed doing,plus he was helping me shower,dress,get in and out of bed,he was cutting up my food and trying to do things my way(the right way!!) and he had no help except from our kids and my Mum and Dad(who are amazingly brilliant people and who were just as helpless and confused as the rest of us)Robert was going to work and coming home and learning how to cook(some,lets just say, interesting,meals were eaten with gratitude back then!) trying to keep up with the housework and the garden and we were on our own trying to make sense of what was happening.
My extended family(aunts,uncles cousins etc.) one of my cousins is a minister of a church,knew I was sick,and they did nothing,the church people I knew also knew I was sick and they did nothing.Oh sorry yes they did,they prayed for me,really kind and considerate that! There we were battling against this unknown illness and they offered to pray and send good thoughts,Sorry doesn't cut it with me,God is Love,Love is a verb-a doing word,You don't talk love,you do it you show it,you cook struggling people a meal,you run the vacuam over the carpet,you stick a load of washing on,maybe wash the dishes,even just pop in and say hello and share a cup of coffee and listen to the hurt and confusion.You don't do nothing,not even a phone call,nothing.I know there wasn't a lot people could do but just to let us know we weren't alone and that they cared would have meant so much and maybe would have prevented a lot of this anger and bitterness from consuming me
So life went on,I eventually got back on my feet and went back to work,life started to look normal again,there were still a few niggly things,symptoms I didn't kow then were actually symptoms but we were getting back on track.I buried all that anger and just concentrated on life.Then I had the next huge relapse which has really stopped me in my tracks and made life change completely no more work,dealing with centrelink, disability services and everything else and still nothing from anyone affiliated with a church. Yes,I'm angry at christian people,at church goers,and I'm angry at myself for needing them to show they care,I'm angry at myself for wanting to be recognized by them.And I'm angry at a God I'm not sure I believe in, for not doing what I want Him to do.For His sake,this is a God that apparently can part seas and stop the sun and raise people from the dead,surely He can fix the holes in my brain!! This is another Why me,it's not fair day. And I needto get all this out cos it's destroying me.
Some where over the last couple of weeks though things have changed a bit,actually I've changed a bit,all right,a lot!
I think in writing out all those thoughts that didn't make sense,not worrying about punctuation and spelling and weather things sounded right or not,letting myself just think and type,I've somehow let myself let go of a lot of anger.
Oh wow have I been angry! At everyone.everything.at MS at doctors and nurses at disabilitySA at my work place the people I worked with,people I didn't know,people who helped me,people who didn't help me, Centrelink staff,I am still very angry at the place centrelink sent me too to assess my level of disability and what work I could do.Come on,you'd be angry too,It's an employment agency for people with disabilities.....with no access for people with disabilities,yep that's right no wheelchair access at all,just a very steep flight of stairs.To get in I had to go round to the side of the building and go through another company,then walk through their back offices to get where I needed to go,yep angry,justifiably so I think. I've been incredibly angry at God(still a bit iffy,on if there is one) and the church,and the people who spout all this love and crap but do nothing to help someone who they know who is sick and struggling and had their world turned upside down.Okay,I see the direction this is going in,I guess it's time to get this venom off my chest that I feel towards christians,specifically the ones I know.(Hmm,if hell's real then I am going to burn something fierce!) I used to go to church,I used to go to Bible study,I used to teach Sunday school!,but I never considered myself religious,to me that is following rules and regulations and my concept of God and Jesus wan't of follwing rules and regulations more of doing good and loving people and showing kindness and consideration where it was needed.Besides I could never come at preaching to people seemed a bit hypocritical to me seeing as I was(and am) far from perfect.Anyway couple of things happened at the church I was going to and I started to question myself and a lot of things so I stopped going.I still believed,still had my faith but didn't want it "tainted" (can't think of a better word) so didn't go to church anymore.Then life got in the way and I started to believe less and then I got MS.
When I first left hospital after that first attack with the iffy diagnosis and not being able to walk or move my foot ,or use a knife and fork or brush my hair blah,blah,blah,I was frightened,confused,worried,out of my mind with everything going on,my family had all those feeling too,plus that added burden of trying to help me process my feelings and all the physical things I couldn't do.
Poor Robert,what he some how he managed to cope with all this I will never know,he had his own feelings and worries,the kids,mine,all the stuff I normally did that still needed doing,plus he was helping me shower,dress,get in and out of bed,he was cutting up my food and trying to do things my way(the right way!!) and he had no help except from our kids and my Mum and Dad(who are amazingly brilliant people and who were just as helpless and confused as the rest of us)Robert was going to work and coming home and learning how to cook(some,lets just say, interesting,meals were eaten with gratitude back then!) trying to keep up with the housework and the garden and we were on our own trying to make sense of what was happening.
My extended family(aunts,uncles cousins etc.) one of my cousins is a minister of a church,knew I was sick,and they did nothing,the church people I knew also knew I was sick and they did nothing.Oh sorry yes they did,they prayed for me,really kind and considerate that! There we were battling against this unknown illness and they offered to pray and send good thoughts,Sorry doesn't cut it with me,God is Love,Love is a verb-a doing word,You don't talk love,you do it you show it,you cook struggling people a meal,you run the vacuam over the carpet,you stick a load of washing on,maybe wash the dishes,even just pop in and say hello and share a cup of coffee and listen to the hurt and confusion.You don't do nothing,not even a phone call,nothing.I know there wasn't a lot people could do but just to let us know we weren't alone and that they cared would have meant so much and maybe would have prevented a lot of this anger and bitterness from consuming me
So life went on,I eventually got back on my feet and went back to work,life started to look normal again,there were still a few niggly things,symptoms I didn't kow then were actually symptoms but we were getting back on track.I buried all that anger and just concentrated on life.Then I had the next huge relapse which has really stopped me in my tracks and made life change completely no more work,dealing with centrelink, disability services and everything else and still nothing from anyone affiliated with a church. Yes,I'm angry at christian people,at church goers,and I'm angry at myself for needing them to show they care,I'm angry at myself for wanting to be recognized by them.And I'm angry at a God I'm not sure I believe in, for not doing what I want Him to do.For His sake,this is a God that apparently can part seas and stop the sun and raise people from the dead,surely He can fix the holes in my brain!! This is another Why me,it's not fair day. And I needto get all this out cos it's destroying me.
Someone elses words,too good not to use
I don't feel like writing today but I did want to put this out there again,If anyone read this I'm hoping that it just might help someone gain some insight,understanding and compassion.
LIFE WITH MS I'm reposting this from another site This isn't exaggerating actually it's down playing it a bit
When We Say We Can’t Do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below....
- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.
- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling: Stick your finger in an electrical socket – preferably wet.
- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?
- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.
- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
-Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzz
- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
-Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.
- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.
- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there til tears appeared.
- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.
- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’ s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.
- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.
- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.
- Swallowing: Try swallowing the hottest chili pepper you can find.
- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms.
Welcome to our world.
Then Finally…
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.
Added Note: This may sound harsh or exaggerated, but trust me when I say that it’s all true. MS is most times considered the ‘invisible’ disease because a lot of us with MS can walk around looking like we’re ok! What you don’t see are the rough times spent at home, alone, at night, when MS causes us the most pain. The next time you see someone with a chronic illness and see them smiling, just remember that they’re probably dealing with a whole lot more than the eye can see…and let them know that you care!
Yep,you're right,I do look well and for sure I don't look sick,but No I'm not faking it for pity or sympathy or to rip off the disability pension,nor am I lazy and just don't want to work.
LIFE WITH MS I'm reposting this from another site This isn't exaggerating actually it's down playing it a bit
When We Say We Can’t Do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below....
- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.
- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling: Stick your finger in an electrical socket – preferably wet.
- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?
- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.
- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
-Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzz
- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
-Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.
- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.
- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there til tears appeared.
- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.
- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’ s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.
- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.
- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.
- Swallowing: Try swallowing the hottest chili pepper you can find.
- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms.
Welcome to our world.
Then Finally…
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.
Added Note: This may sound harsh or exaggerated, but trust me when I say that it’s all true. MS is most times considered the ‘invisible’ disease because a lot of us with MS can walk around looking like we’re ok! What you don’t see are the rough times spent at home, alone, at night, when MS causes us the most pain. The next time you see someone with a chronic illness and see them smiling, just remember that they’re probably dealing with a whole lot more than the eye can see…and let them know that you care!
Yep,you're right,I do look well and for sure I don't look sick,but No I'm not faking it for pity or sympathy or to rip off the disability pension,nor am I lazy and just don't want to work.
I had this as my facebook status a couple of days ago and I feel like it needs to be in my blog.
Wednesday 21 March 2012
Awesomeness!!!
I got up yesterday morning and I felt great! Nothing hurt,nothing buzzed,nothing,tingled,no pins and needles nothing was squishy or heavy,no fog in my head or in front of my eyes,I felt......NORMAL!!!!! If my legs had worked properly I could almost have forgotten I had MS.
Overnight a cool change had blown in and it had rained quite heavily,the heat and humidity had gone and it seemed to have blown away the majority of my symptoms.I was smart though I didn't go nuts and try to do as much as I could,while the goodness lasted and overdo it making things get bad again.Actually I spent a lot of the time marvelling at how wonderful it was to just not feel anything!!(Who's blog is this?! It's so nauseatingly positive!) I had a bit of a shuffle(I can't really call it a walk) out the back,made it the end of the cement twice with no wobbles,I was completely under my own steam,no walker,no cane,just a husband hovering trying to pretend he wasn't!! and a dog so close behind me I had to wash dog snot off the back of my leg Gross!! ( I know he's old and he can't see properly anymore but seriously Klaus,not that close)
My head did get a bit buzzy and my arms and hands a bit tingly,but not the usual strong pins and needles,later in the day but no where near as bad as usual and last night I slept for 5 hours straight.That's right 5 hours,I haven't slept that long without interruption for so long I can't remember when it was,probably when I had my gall bladder out,general anaesthetic induced sleep sort of counts doesn't it?
I've woken up this morning and guess what? I STILL feel good WOOHOO!!!! I'm not going to push it though,I will get a few things done,but I want to do enough that I feel like I've achieved something but not too much that I over do it and ruin the strongness I feel(Hmm,red underline,I don't think strongness is a real word,too bad it is now!!) And I'm not going to sit here and start over thinking it and start to wonder how long it will last and worry that the symptoms will come back full force and drag me back down and make me struggle to do simple things.I am just going to ENJOY it.Is this REALLY me? Did someone hijack my brain or something?! Be careful Alison,you might start seeing rainbows everywhere and look,is that a butterfly in the garden? Hmm,think there might be some lollypops in the pantry! AARGHH!! Who are you and what have you done with the real Alison?!!
Overnight a cool change had blown in and it had rained quite heavily,the heat and humidity had gone and it seemed to have blown away the majority of my symptoms.I was smart though I didn't go nuts and try to do as much as I could,while the goodness lasted and overdo it making things get bad again.Actually I spent a lot of the time marvelling at how wonderful it was to just not feel anything!!(Who's blog is this?! It's so nauseatingly positive!) I had a bit of a shuffle(I can't really call it a walk) out the back,made it the end of the cement twice with no wobbles,I was completely under my own steam,no walker,no cane,just a husband hovering trying to pretend he wasn't!! and a dog so close behind me I had to wash dog snot off the back of my leg Gross!! ( I know he's old and he can't see properly anymore but seriously Klaus,not that close)
My head did get a bit buzzy and my arms and hands a bit tingly,but not the usual strong pins and needles,later in the day but no where near as bad as usual and last night I slept for 5 hours straight.That's right 5 hours,I haven't slept that long without interruption for so long I can't remember when it was,probably when I had my gall bladder out,general anaesthetic induced sleep sort of counts doesn't it?
I've woken up this morning and guess what? I STILL feel good WOOHOO!!!! I'm not going to push it though,I will get a few things done,but I want to do enough that I feel like I've achieved something but not too much that I over do it and ruin the strongness I feel(Hmm,red underline,I don't think strongness is a real word,too bad it is now!!) And I'm not going to sit here and start over thinking it and start to wonder how long it will last and worry that the symptoms will come back full force and drag me back down and make me struggle to do simple things.I am just going to ENJOY it.Is this REALLY me? Did someone hijack my brain or something?! Be careful Alison,you might start seeing rainbows everywhere and look,is that a butterfly in the garden? Hmm,think there might be some lollypops in the pantry! AARGHH!! Who are you and what have you done with the real Alison?!!
Monday 19 March 2012
Starting to get frustrated with myself,I go to bed at night and my thoughts are beginning to whirl again.I find myself actually laying there,"writing" a blog entry,putting the words in the right order and making sure it flows well. Them I get up in the morning turn on the computer put my fingers on the keyboard and........nothing!! All my thoughts gone,perfectly constructed sentences disappeared and I sit here thinking"What did I want to say?" Blank,so I go over to facebook scroll around there for awhile hoping something will come back,then forget what I was doing!!
I have been going to a lot of MS sites recently,I suppose I'm starting to accept that I REALLY do have it and that I'm not going to wake up one day and be able to walk like a normal person and have none of the other problems I have.I think part of me deep down is hoping that this is a huge joke that everyone is in on except me and that eventually I'll catch on and the joke will be over.I know that's not going to happen but I can still pretend can't I?
I've realized that there is a huge amount of information out there and an even huger amount of misinformation as well,trying to sort out the good from the bad sometimes does my head in,some of the good stuff has ended up on my facebook wall,it seems to be coming an MS advocacy site! I think some of my friends might be getting fed up with being bombarded by MS info! Oh well at least there's a lot less "Woe is me,My life sucks,Why me?" status updates than there used to be!
I have been a lot more settled in myself the last couple of weeks,I think starting this blog and getting out some of the thoughts has really helped me.
I have been going to a lot of MS sites recently,I suppose I'm starting to accept that I REALLY do have it and that I'm not going to wake up one day and be able to walk like a normal person and have none of the other problems I have.I think part of me deep down is hoping that this is a huge joke that everyone is in on except me and that eventually I'll catch on and the joke will be over.I know that's not going to happen but I can still pretend can't I?
I've realized that there is a huge amount of information out there and an even huger amount of misinformation as well,trying to sort out the good from the bad sometimes does my head in,some of the good stuff has ended up on my facebook wall,it seems to be coming an MS advocacy site! I think some of my friends might be getting fed up with being bombarded by MS info! Oh well at least there's a lot less "Woe is me,My life sucks,Why me?" status updates than there used to be!
I have been a lot more settled in myself the last couple of weeks,I think starting this blog and getting out some of the thoughts has really helped me.
Sunday 18 March 2012
The Spoon Theory
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
This is really,really good,It's written by a lady with lupus but I think it works equally well for living with MS.I'm going to use this when I need too.
I'll get back to writing soon,have been enjoying some thoughtless days!! Plus I want to get on with writing out my story,I think I left it at only just getting to the hospital,so much more to go.
Friday 16 March 2012
What to say?
I'm in this really weird stage at the moment,I really want to talk but i have no idea what about.My thoughts aren't scattered or anything,it's more like I don't actually have any! It's nice,I think I like it,It's quiet in my head.
Think I'll make the most of this while it lasts and give myself the chance to just be.
Think I'll make the most of this while it lasts and give myself the chance to just be.
Tuesday 13 March 2012
Yucky pain filled days
WARNING Don't read if you have a weak stomach!!
So I finished the steroids and was looking forward to an easy few days,was a long weekend here and we( insert I had planned for Robert) had planned to finally sort out the spare room.Hmm *life has a way of getting in the way of plans* (note to self,don't make plans) Saturday I was a bit achey in the head nothing major just a bit":my heads a bit sore" The washing machine broke down so Robert went and got parts and started to fix it,spare room can get started tomorrow. Sunday head is a little worse,take some panadol,feel a bit better,later on switch to nurofen,much better,except now it feels like I need to take my left eye out and clean underneath it.It's like someone lifted a rug and swept dirt underneath it and there's a stabbing pain occasionally but it's all good. The washing machine repair is going well new parts put in,put a load in,start it up, it fills up with water and then....nothing.Yep nearly 100 dollars on new parts,(which did need replacing) and the circuit board has burnt out(probably explains the burning smell from last week!) Poor Robert,ended up taking the soaking wet clothes out and spending a couple of hours at the laundromat,just what he needed! I think we're going to get a new washing machine.Monday comes around .head is worse,migraine on it's way,eye is leaking and hurting.Any plans we had are now out the window and we just have a lazy day .
Slept extremely badly Monday night,pain kept moving from eye to head to nose but I've had that many pain killers I'm beginning to worry about my liver!!
I thought I was going to vomit so I got up at quarter to 5 ,made a cup of tea and a coffee for Robert.and just sat at the table wanting him not to go to work but knowing he needed to.Days off after a public holiday are a no-no unless someone has died,even then it takes some convincing! The waves of nausea hit me again and I knew I won't make it anywhere to throw up( get sick anywhere else in your body and MS flares) Robert grabbed me a bowl and yuck,gross I threw up.But thankfully it seems to have taken the edge of the pain and I start to fill a bit more human and don't think I need him to stay home quite so much, I decide to have a day in bed and he leaves for work at 5.30 a.m. with only a little bit of a guilty consciounse?conshuns" crap how do you spell conciounse?!
Yeah,great,all hell breaks loose,Klaus(the dog) gets up and wants to go out,so I get up from where I'm sitting not too bad and move to the back door,stupid mistake,the movement signals my stomach to let loose.I manage to open the sliding door and hurl all over the back door step!! It's all good it's outside only a little bit on the glass,easy to hose off the cement,Right?Yeah that's what I thought too 'til my legs started to wobble and I thought I was going to fall out the door! My head is pounding,my nose is streaming thr tears are stinging my eyes and I can barely see,my stomach starts doing a lap dance on ny liver and I just want to die!! Klaus is busting for a wee ans somehow manges to leap up over the mess and race off for relief(not bad for an old dog with a ruptured ACL joint!) I take a step back and promptly throw up all over the floor...3 times.Did manage to stay on my feet though! By now my stomach is completley empty but is it over? "Hmm,how can we make this day even more miserable for her? I know lets keep heaving and make her head pound worse and make the vile yellow bile stuff come out of her mouth!!! Ooh and for extra fun lets see just how strong her bladder muscles REALLY are.!!" They're good,they're strong,but under this attack? Sorry. So there I am surrounded by vomit,hurting,crying,grossed out big time becausae now Klaus is back and the stuff outside? He thinks I've given him a lovely present! I know,he's a dog,dogs do shit like that,but please not MY dog!
Chuck Norris aka Chuckie(the cat) shows up takes one look gives me a supecillious"you are SOOOO disgusting"look and promptly disappears again.I'm barely hanging on manage to get myself to a chair,plonk myself down and "DAVID,can you help me please?!" in my best trembly voice,that I have no idea how he heard,my voice was as weak as the rest of me.Poor kid,getting woken up at 6.30 and confronted with a mess like that,just what every 17 year old boy needs right? We manage to clean upas best we can(I did the worst of the floor,he's a good kid like I said but I've decided he doesn't do Mums vomit clean up).I've got to get vomit out of the sliding door track,and it's making me want to throw up again,eventually it's done,I get myself cleaned up and curl up in bed,only venturing out to go to the loo and have sips of water(which I then throw up).By now it's about 11 a.m. and a road gang has decided to start excavating a 3rd nostril at the top of my nose.So I take a sinus pain tablet(Yeah I know,way too many pain killers but hey I HURT) and try to sleep away my life.
!.30pm get up again,why is my bladder the only thing that seems to function any more?! Switch on the computer and there's pictures of a fire in Adelaide,start to read the story,the fire is in Wingfield, Robert works in Wingfield,okay give him a ring.Doesn't answer,stay calm google the place on fire so I can see how clse it is and whether Robert doesn't answer his phone cos yet again he forgot to charge it,ot left it home( he forgot to charge it!) The fire is right near his work,okay I think it's all right to worry a bit now.I'm flitting all over the internet,scrabbling for information and keep ringing a phone that doesn't get answered.My head hurts again,the road crew shift camp and decide to jack hammer a hole thru my left cheek bone and I'm scared and hurting and just down right miserable and I want my Mum!! Did I ring anyone? Did I ask for help? Of course not! That would be sensible and smart and totally out of character for me,Why seek help and comfort when you can scare yourself stupid sitting home on your own worrying?!
Robert got home at 3.15 YAY! ( Have I mentioned how much I love this man?) For him it was a pretty exciting day,water bombing planes flying overhead,smoke shutting out the sun,flames leaping in the sky,occasional explosions.His work was just outside the evacuation zone and the power got cut so not much got done.Fortunately no-one was seriously hurt,no loss of life one fireman was treated for a burnt hand.I do wonder though,apparently the fire was started by sparks from a welder,Now my husband is a welder,he works in that area what exactly WAS he doing yesterday!! :o)
In the midst of all this pain and worry and vomit and totally gross,awful day a thought came to me CARL!! Yep,Carl that's the name of the guy from :Love Actually" with the really hot body,who went out with the girl,who's brother was in hospital!! I think,maybe I better google and double check,geez my brain works weird.
So to today,I think I'm gonna have a rest and recover,Maggi chicken noodle soup day( Why when I feel crap and sick and yuck do I just want Maggi chicken noodle soup?) And do you know how hard it is to buy now? No other brand will do it;s got to be MAGGI not cup-a -soup either it's got to be the one you do in a saucepan!! Have you ever noticed that anything chicken flavoured tastes NOTHING like chicken?!
Okay,I'm going to bed :o)
So I finished the steroids and was looking forward to an easy few days,was a long weekend here and we( insert I had planned for Robert) had planned to finally sort out the spare room.Hmm *life has a way of getting in the way of plans* (note to self,don't make plans) Saturday I was a bit achey in the head nothing major just a bit":my heads a bit sore" The washing machine broke down so Robert went and got parts and started to fix it,spare room can get started tomorrow. Sunday head is a little worse,take some panadol,feel a bit better,later on switch to nurofen,much better,except now it feels like I need to take my left eye out and clean underneath it.It's like someone lifted a rug and swept dirt underneath it and there's a stabbing pain occasionally but it's all good. The washing machine repair is going well new parts put in,put a load in,start it up, it fills up with water and then....nothing.Yep nearly 100 dollars on new parts,(which did need replacing) and the circuit board has burnt out(probably explains the burning smell from last week!) Poor Robert,ended up taking the soaking wet clothes out and spending a couple of hours at the laundromat,just what he needed! I think we're going to get a new washing machine.Monday comes around .head is worse,migraine on it's way,eye is leaking and hurting.Any plans we had are now out the window and we just have a lazy day .
Slept extremely badly Monday night,pain kept moving from eye to head to nose but I've had that many pain killers I'm beginning to worry about my liver!!
I thought I was going to vomit so I got up at quarter to 5 ,made a cup of tea and a coffee for Robert.and just sat at the table wanting him not to go to work but knowing he needed to.Days off after a public holiday are a no-no unless someone has died,even then it takes some convincing! The waves of nausea hit me again and I knew I won't make it anywhere to throw up( get sick anywhere else in your body and MS flares) Robert grabbed me a bowl and yuck,gross I threw up.But thankfully it seems to have taken the edge of the pain and I start to fill a bit more human and don't think I need him to stay home quite so much, I decide to have a day in bed and he leaves for work at 5.30 a.m. with only a little bit of a guilty consciounse?conshuns" crap how do you spell conciounse?!
Yeah,great,all hell breaks loose,Klaus(the dog) gets up and wants to go out,so I get up from where I'm sitting not too bad and move to the back door,stupid mistake,the movement signals my stomach to let loose.I manage to open the sliding door and hurl all over the back door step!! It's all good it's outside only a little bit on the glass,easy to hose off the cement,Right?Yeah that's what I thought too 'til my legs started to wobble and I thought I was going to fall out the door! My head is pounding,my nose is streaming thr tears are stinging my eyes and I can barely see,my stomach starts doing a lap dance on ny liver and I just want to die!! Klaus is busting for a wee ans somehow manges to leap up over the mess and race off for relief(not bad for an old dog with a ruptured ACL joint!) I take a step back and promptly throw up all over the floor...3 times.Did manage to stay on my feet though! By now my stomach is completley empty but is it over? "Hmm,how can we make this day even more miserable for her? I know lets keep heaving and make her head pound worse and make the vile yellow bile stuff come out of her mouth!!! Ooh and for extra fun lets see just how strong her bladder muscles REALLY are.!!" They're good,they're strong,but under this attack? Sorry. So there I am surrounded by vomit,hurting,crying,grossed out big time becausae now Klaus is back and the stuff outside? He thinks I've given him a lovely present! I know,he's a dog,dogs do shit like that,but please not MY dog!
Chuck Norris aka Chuckie(the cat) shows up takes one look gives me a supecillious"you are SOOOO disgusting"look and promptly disappears again.I'm barely hanging on manage to get myself to a chair,plonk myself down and "DAVID,can you help me please?!" in my best trembly voice,that I have no idea how he heard,my voice was as weak as the rest of me.Poor kid,getting woken up at 6.30 and confronted with a mess like that,just what every 17 year old boy needs right? We manage to clean upas best we can(I did the worst of the floor,he's a good kid like I said but I've decided he doesn't do Mums vomit clean up).I've got to get vomit out of the sliding door track,and it's making me want to throw up again,eventually it's done,I get myself cleaned up and curl up in bed,only venturing out to go to the loo and have sips of water(which I then throw up).By now it's about 11 a.m. and a road gang has decided to start excavating a 3rd nostril at the top of my nose.So I take a sinus pain tablet(Yeah I know,way too many pain killers but hey I HURT) and try to sleep away my life.
!.30pm get up again,why is my bladder the only thing that seems to function any more?! Switch on the computer and there's pictures of a fire in Adelaide,start to read the story,the fire is in Wingfield, Robert works in Wingfield,okay give him a ring.Doesn't answer,stay calm google the place on fire so I can see how clse it is and whether Robert doesn't answer his phone cos yet again he forgot to charge it,ot left it home( he forgot to charge it!) The fire is right near his work,okay I think it's all right to worry a bit now.I'm flitting all over the internet,scrabbling for information and keep ringing a phone that doesn't get answered.My head hurts again,the road crew shift camp and decide to jack hammer a hole thru my left cheek bone and I'm scared and hurting and just down right miserable and I want my Mum!! Did I ring anyone? Did I ask for help? Of course not! That would be sensible and smart and totally out of character for me,Why seek help and comfort when you can scare yourself stupid sitting home on your own worrying?!
Robert got home at 3.15 YAY! ( Have I mentioned how much I love this man?) For him it was a pretty exciting day,water bombing planes flying overhead,smoke shutting out the sun,flames leaping in the sky,occasional explosions.His work was just outside the evacuation zone and the power got cut so not much got done.Fortunately no-one was seriously hurt,no loss of life one fireman was treated for a burnt hand.I do wonder though,apparently the fire was started by sparks from a welder,Now my husband is a welder,he works in that area what exactly WAS he doing yesterday!! :o)
In the midst of all this pain and worry and vomit and totally gross,awful day a thought came to me CARL!! Yep,Carl that's the name of the guy from :Love Actually" with the really hot body,who went out with the girl,who's brother was in hospital!! I think,maybe I better google and double check,geez my brain works weird.
So to today,I think I'm gonna have a rest and recover,Maggi chicken noodle soup day( Why when I feel crap and sick and yuck do I just want Maggi chicken noodle soup?) And do you know how hard it is to buy now? No other brand will do it;s got to be MAGGI not cup-a -soup either it's got to be the one you do in a saucepan!! Have you ever noticed that anything chicken flavoured tastes NOTHING like chicken?!
Okay,I'm going to bed :o)
Monday 12 March 2012
Is it a poem if it doesn't rhyme?
Bruised,Bloodied,Broken
Dejected Despondent
But not Defeated.
Time to rest,Time to recover,Time to strengthen
I shall lay here a while.
Then,then I will rise, pick up my sword and do battle again.
Dejected Despondent
But not Defeated.
Time to rest,Time to recover,Time to strengthen
I shall lay here a while.
Then,then I will rise, pick up my sword and do battle again.
Sunday 11 March 2012
Opening up a can of worms
Religion,God.Faith,Hmm,maybe not a good idea to go here so late but I'm guessing at some point I will need to sort myself out about this subject,Do I believe? Do I have faith? Is there a God? And if there is where does he figure in all this? I think I believe in God,I do wonder though if he believes in me.Don't know why this has come up now and why at 11.15p.m. just as I'm about to switch the computer off,I feel I need to start typing about it.But there you go totally random thought process that sometimes needs to be addressed.
I really don't know what to say or where to go with this topic so I might just leave it alone for now and recognize that I probably will come back to this sooner or later,it's been a long day though and people on face book and in a couple of groups I've joined have been affected by full moon madness I think.I must be naive to think that a support group might actually be supportive!! There is one though that is fantastic and I feel really comfortable and welcome there,the other ones I might just keep on the back burner for a bit,see if the nuttiness stops.
Short and sweet with this one,be interesting to see where this theme leads me though.
I really don't know what to say or where to go with this topic so I might just leave it alone for now and recognize that I probably will come back to this sooner or later,it's been a long day though and people on face book and in a couple of groups I've joined have been affected by full moon madness I think.I must be naive to think that a support group might actually be supportive!! There is one though that is fantastic and I feel really comfortable and welcome there,the other ones I might just keep on the back burner for a bit,see if the nuttiness stops.
Short and sweet with this one,be interesting to see where this theme leads me though.
Saturday 10 March 2012
Let's see if this makes sense
I wrote this in a group I am a part of,but I want to keep some of it and expand a bit on it.I'm fairly certain there's more I need to say along this theme so I might keep it and edit as the thoughts come back to me.
Before I had MS,I knew nothing about it.I had heard of it,as a disease,but didn't know what it was or what it could do to you.
My children played basketball when they were younger and thru the MS Society we were able to get really cheap tickets to go watch the 36ers play,Supporting a charity and CHEAP tickets excellent!!
My kids also always did the read-a-thon,not from any great charitable motive but more from "cool.look what I can win!!" Plus all 3 have inherited my love of reading and books and saw the read-a-thon as a challenge to see how many more books they could read than the year before.
My nephew has been doing the read-a-thon for the last few years too.He was going to stop a couple of years ago but then I got diagnosed so he has kept going.He asked me if the money he raised could go straight to me!! Last year he went to the primary school to talk to the younger students about MS,the read-a-thon and why other kids should do it.I think I have become his pet project and he has been doing great raising a bit of awareness in the Bordertown area.
About 3 weeks before my first attack,Susan on Neighbours was diagnosed.I caught up with Neighbours last week,WOW I wish I could have her MS!! No residual damage,no symptoms,I wish I could get my hands on that amazing drug she's taking!!!(I know,I know,it's a TV show!) Reminds me of that scene in "When Harry met Sally";"I'll have what she's having!"
Hmm,can't remember where I was going with this,might just keep rambling and hope I find my point again,Oh yeah,I guess I have always KNOWN MS was out there but really had no concept OF it,until I got it myself.It's been a very steep learning curve the last 2 or 3 years and one which I still resent and get angry about.
I had a message this morning about counting your blessings and trying to look at things with a different perspective,my first reaction,of course it was!) Was one of anger BLESSINGS?? What blessings? But then I did decide to shift my focus a little and not look at things my usual way,Geez it was hard to try a different aproach.I have to admit it was friggin hard,I sat there for ages and all I could come up with? "Well I can breathe!!" I guess that's a good way to start your day.
I do have lots of good things in my life,my family being the greatest of those,if ever I struggle to come up with a blessing again I only have to remember how wonderful those people are and know that I am extremely lucky.
Now don't be getting the wrong idea here,I am in know way going to be changing into a sugary sweet Pollyanna Ugh!!(Excuse me,I think I just vomited in my mouth a little!!) Don't take this the wrong way Pollyanna people,you are very much needed on this planet,just I know I'm not one of you and it would be wrong to try to be something I'm not,besides every good chef knows you need a bit of spice to bring the best out of sugar! But just that I remembered something that I used to try to live by-- Perception is NOT reality,just because you believe something to be true doesn't mean it is. Don't assume,Don't jump to conclusions,Find out all the facts,then form an opinion and be willing to be wrong.
I seriously have lost my way with this entry and have absolutely no idea what I am trying to express!!! Dumbarse!
I know the anger is not going to disappear over night,I doubt it will ever go away completely,actually I don't know as I want it to completely,at least it is an emotion and motivation,at least if I'm angry I'm feeling.I think it can be good as long as I don't turn it on myself and start hating me( I'm very good at that already) I need to use the anger to hate MS and use it to motivate me to live the best way I can with it.Maybe make it my Frenemy,the friend you love to hate,Naw,as if that's going to happen!!
Think it's time to shut up for a bit I'm confusing myself and can't seem to make sense to me.
Before I had MS,I knew nothing about it.I had heard of it,as a disease,but didn't know what it was or what it could do to you.
My children played basketball when they were younger and thru the MS Society we were able to get really cheap tickets to go watch the 36ers play,Supporting a charity and CHEAP tickets excellent!!
My kids also always did the read-a-thon,not from any great charitable motive but more from "cool.look what I can win!!" Plus all 3 have inherited my love of reading and books and saw the read-a-thon as a challenge to see how many more books they could read than the year before.
My nephew has been doing the read-a-thon for the last few years too.He was going to stop a couple of years ago but then I got diagnosed so he has kept going.He asked me if the money he raised could go straight to me!! Last year he went to the primary school to talk to the younger students about MS,the read-a-thon and why other kids should do it.I think I have become his pet project and he has been doing great raising a bit of awareness in the Bordertown area.
About 3 weeks before my first attack,Susan on Neighbours was diagnosed.I caught up with Neighbours last week,WOW I wish I could have her MS!! No residual damage,no symptoms,I wish I could get my hands on that amazing drug she's taking!!!(I know,I know,it's a TV show!) Reminds me of that scene in "When Harry met Sally";"I'll have what she's having!"
Hmm,can't remember where I was going with this,might just keep rambling and hope I find my point again,Oh yeah,I guess I have always KNOWN MS was out there but really had no concept OF it,until I got it myself.It's been a very steep learning curve the last 2 or 3 years and one which I still resent and get angry about.
I had a message this morning about counting your blessings and trying to look at things with a different perspective,my first reaction,of course it was!) Was one of anger BLESSINGS?? What blessings? But then I did decide to shift my focus a little and not look at things my usual way,Geez it was hard to try a different aproach.I have to admit it was friggin hard,I sat there for ages and all I could come up with? "Well I can breathe!!" I guess that's a good way to start your day.
I do have lots of good things in my life,my family being the greatest of those,if ever I struggle to come up with a blessing again I only have to remember how wonderful those people are and know that I am extremely lucky.
Now don't be getting the wrong idea here,I am in know way going to be changing into a sugary sweet Pollyanna Ugh!!(Excuse me,I think I just vomited in my mouth a little!!) Don't take this the wrong way Pollyanna people,you are very much needed on this planet,just I know I'm not one of you and it would be wrong to try to be something I'm not,besides every good chef knows you need a bit of spice to bring the best out of sugar! But just that I remembered something that I used to try to live by-- Perception is NOT reality,just because you believe something to be true doesn't mean it is. Don't assume,Don't jump to conclusions,Find out all the facts,then form an opinion and be willing to be wrong.
I seriously have lost my way with this entry and have absolutely no idea what I am trying to express!!! Dumbarse!
I know the anger is not going to disappear over night,I doubt it will ever go away completely,actually I don't know as I want it to completely,at least it is an emotion and motivation,at least if I'm angry I'm feeling.I think it can be good as long as I don't turn it on myself and start hating me( I'm very good at that already) I need to use the anger to hate MS and use it to motivate me to live the best way I can with it.Maybe make it my Frenemy,the friend you love to hate,Naw,as if that's going to happen!!
Think it's time to shut up for a bit I'm confusing myself and can't seem to make sense to me.
Friday 9 March 2012
Blah
I don't want to do this anymore,I feel like crap very down sad don't know why.Just all of a sudden feel like I've been hit by a ton of bricks.I wish it was winter,then I could go get in bed curl up in a ball,pull the covers over me and hide from everything and me.
I thought this would help me but I still can't find any answers to who,what,why I am.I still am struggling with everything that I was struggling with before,only thing is that now more people know that I'm struggling.I don't really know what I feel anymore
I wanted this to be a way to express myseld and maybe discover parts of myself that I had shut down for so long that I had forgotten they were there,instead I find myself incredibly sad,and even more bogged down with despair.
I just want to be free of all this stuff,I just want to be happy and at peace,comfortable in my own skin,I want to be proud of myself.I just want to be
I don't think I'll continue with the MS story,it's too long and drawn out and I don't have the energy or the head space to get the details right and that is something that I need to do right.It may not matter to anyone else but it does to me.
I need to shut up letting stuff out doesn't help,it just puts in front of you why you're a loser and screw up
I thought this would help me but I still can't find any answers to who,what,why I am.I still am struggling with everything that I was struggling with before,only thing is that now more people know that I'm struggling.I don't really know what I feel anymore
I wanted this to be a way to express myseld and maybe discover parts of myself that I had shut down for so long that I had forgotten they were there,instead I find myself incredibly sad,and even more bogged down with despair.
I just want to be free of all this stuff,I just want to be happy and at peace,comfortable in my own skin,I want to be proud of myself.I just want to be
I don't think I'll continue with the MS story,it's too long and drawn out and I don't have the energy or the head space to get the details right and that is something that I need to do right.It may not matter to anyone else but it does to me.
I need to shut up letting stuff out doesn't help,it just puts in front of you why you're a loser and screw up
Thursday 8 March 2012
Wednesday 7 March 2012
Tuesday 6 March 2012
Why my blog is called what it is
Been having a relatively good day today,up until the last half hour or so.My head is wobbly and buzzy and I can't work out why.Might be cos I wasn't hungry and didn't eat lunch,but it's 5 pm and I just put dinner in the oven so I guess I can wait.
Anyway,some of what is here is writings from other places that I wanted to keep all in one place,so some of it is from emails or other groups or facebook statuses.There was one status I wrote out a few months back that I wrote out as kind of a stand for who I am but of course now I want it,I can't find it! And I don't feel like trawling thru months of pages on my facebook just to find it.I really should I'm pretty sure it was amazingly insightful,brilliant and would have been the most significant piece of writing ever.Yeah okay,I can kid myself here!
I HAVE MS but I am NOT MS. I have a disease but it doesn't have me,I am still me.Who I was before MS is whi I am now.I still love the same things,hate the same things. Daffodils are still my favourite flowers.(I call them happy flowers,there so bright and cheery.) I still hate brussel sprouts.Purple in all it's shade was and is my favourite colour.I still hate spiders,horrible creepy ugly things. I still worry too much,care too much about what other people think.I still love my children more than I can express,I still feel sorry for other people because those 3 amazing people are my children not theirs.
I'm still ME,still impatient,a control freak,I'm still caring,considerate,kind.I'm still detail orientated need to have the i's dotted and t's crossed.I still like my house clean and straight and tidy,with everything in it's place,I still hate cleaning and straightening and tidying and putting things in their place.Therefore I live in frustration that i can never find anything when I want it!!
I still hate rude people and knowing that at times I am one of them,I hate that I have the same insecurites,low self esteem(no self esteem) that I had before.I still don't know what I want to BE when I grow up( Hurry up Alison,you're 48 soon,time is running out) I still love watching V8 super cars racing.I love the same books,movies TV shows.George Clooney and that guy from Love Actually with the AMAZING body.wish I could remember his name(he dated the girl who's brother was in the hospital).I still love the same music(80s tragic!) Especially Australian 80s bands.I still love the same foods as I did before,hate trying new things,in case I don't like it and then it's a waste of money.
I AM STILL ME I am not a disease,I have a disease,it does not have me.
I HAVE MS but I AM NOT MS
Anyway,some of what is here is writings from other places that I wanted to keep all in one place,so some of it is from emails or other groups or facebook statuses.There was one status I wrote out a few months back that I wrote out as kind of a stand for who I am but of course now I want it,I can't find it! And I don't feel like trawling thru months of pages on my facebook just to find it.I really should I'm pretty sure it was amazingly insightful,brilliant and would have been the most significant piece of writing ever.Yeah okay,I can kid myself here!
I HAVE MS but I am NOT MS. I have a disease but it doesn't have me,I am still me.Who I was before MS is whi I am now.I still love the same things,hate the same things. Daffodils are still my favourite flowers.(I call them happy flowers,there so bright and cheery.) I still hate brussel sprouts.Purple in all it's shade was and is my favourite colour.I still hate spiders,horrible creepy ugly things. I still worry too much,care too much about what other people think.I still love my children more than I can express,I still feel sorry for other people because those 3 amazing people are my children not theirs.
I'm still ME,still impatient,a control freak,I'm still caring,considerate,kind.I'm still detail orientated need to have the i's dotted and t's crossed.I still like my house clean and straight and tidy,with everything in it's place,I still hate cleaning and straightening and tidying and putting things in their place.Therefore I live in frustration that i can never find anything when I want it!!
I still hate rude people and knowing that at times I am one of them,I hate that I have the same insecurites,low self esteem(no self esteem) that I had before.I still don't know what I want to BE when I grow up( Hurry up Alison,you're 48 soon,time is running out) I still love watching V8 super cars racing.I love the same books,movies TV shows.George Clooney and that guy from Love Actually with the AMAZING body.wish I could remember his name(he dated the girl who's brother was in the hospital).I still love the same music(80s tragic!) Especially Australian 80s bands.I still love the same foods as I did before,hate trying new things,in case I don't like it and then it's a waste of money.
I AM STILL ME I am not a disease,I have a disease,it does not have me.
I HAVE MS but I AM NOT MS
Monday 5 March 2012
Need to digress for a bit,plus a bit of a dilemna
I was going to spend the next few days or entries or however long it takes trying to document my MS "adventure" (for want of a better word and I do hate how everyone has a "journey" these day) Sorry,I'm digressing in my digression and I better shut up and try to get back to the original thought before I forget again!! Just on the journey thing,was watching Biggest Loser last night and the amount of times it was said drove me nuts!! Okay,respect to people on a journey I hope your end destination brings you what ever you need it too.
My need for details and getting the story right,means that occasionally I will need to stop and put bits in I forgot and I realized from the last entry that I need to introduce someone.Someone very special to me.You might have noticed the name Robert suddenly pop up.Well,he is my husband,we have been together since I was 18 and he,23.I'm 47 now and he is 52. Oh my,I'm 47,how did I get old?When did that happen? Inside,I'm still 18 and naive and immature and yet somehow who ever decides these things thought I could get married and have 3 children and raise them right? *Shaking head in disbelief*
Robert and I got married on May 25th 1985,we've been thru some really,really hard times(one day,if I ever get finished diverting from the MS stuff I might get around to talking about that stuff too) but we've some how managed to stay together,I think some times just out of sheer stubborness.We've done the poorer,the worse,the sickness,I think we're both hanging on for the RICHER,BETTER and HEALTH part.Til death do us part? Grit your teeth, one of us will go eventually!!!
I think it helps too that we've never actually fallen out of love with each other at the same time,long term relationships ebb and flow.And I think that as long as one of you is able to dig your heels in and fight for it,you'll weather the hard times.Not sure ,what happens if you both stop loving at the same time though?? Guess that's what divorce lawyers are for!
So the need for the digression was to introduce my husband,I hope you like him,he's a good guy and I do and that's all that matters.Our marriage is far from perfect,but most of the time it works for us.
Okay,on to the dilemna,people are reading this blog.AARRGGH!!!! Yep.people are reading it,and from the messages of support I have received actually liking it,now I have to say I'm a bit chuffed that people have taken the time to stop and type me a message,but that brings up my problem,I'm scared now,that I'm going to start censoring and monitoring what I type so it's kind of brought my free flowing thoughts to a screeching halt.
But if I didn't want anyone to read it,why did I make it publicAND post the link? Okay,typo error there,do NOT go back and correct,take back the freedom to be.This is not an exam you are not being graded,It's your place Alison just be you.*Deep breath in and move on*
Thank you for the support and encouragement,it means so much to me and I appreciate everything you've all said,but I need to go back to just doing it for me :o)
My need for details and getting the story right,means that occasionally I will need to stop and put bits in I forgot and I realized from the last entry that I need to introduce someone.Someone very special to me.You might have noticed the name Robert suddenly pop up.Well,he is my husband,we have been together since I was 18 and he,23.I'm 47 now and he is 52. Oh my,I'm 47,how did I get old?When did that happen? Inside,I'm still 18 and naive and immature and yet somehow who ever decides these things thought I could get married and have 3 children and raise them right? *Shaking head in disbelief*
Robert and I got married on May 25th 1985,we've been thru some really,really hard times(one day,if I ever get finished diverting from the MS stuff I might get around to talking about that stuff too) but we've some how managed to stay together,I think some times just out of sheer stubborness.We've done the poorer,the worse,the sickness,I think we're both hanging on for the RICHER,BETTER and HEALTH part.Til death do us part? Grit your teeth, one of us will go eventually!!!
I think it helps too that we've never actually fallen out of love with each other at the same time,long term relationships ebb and flow.And I think that as long as one of you is able to dig your heels in and fight for it,you'll weather the hard times.Not sure ,what happens if you both stop loving at the same time though?? Guess that's what divorce lawyers are for!
So the need for the digression was to introduce my husband,I hope you like him,he's a good guy and I do and that's all that matters.Our marriage is far from perfect,but most of the time it works for us.
Okay,on to the dilemna,people are reading this blog.AARRGGH!!!! Yep.people are reading it,and from the messages of support I have received actually liking it,now I have to say I'm a bit chuffed that people have taken the time to stop and type me a message,but that brings up my problem,I'm scared now,that I'm going to start censoring and monitoring what I type so it's kind of brought my free flowing thoughts to a screeching halt.
But if I didn't want anyone to read it,why did I make it publicAND post the link? Okay,typo error there,do NOT go back and correct,take back the freedom to be.This is not an exam you are not being graded,It's your place Alison just be you.*Deep breath in and move on*
Thank you for the support and encouragement,it means so much to me and I appreciate everything you've all said,but I need to go back to just doing it for me :o)
And so it begins.....
It's July 26th 2009 at 4.15 a.m. I start work at 5a.m. so I'm a very early riser! Life is pretty good,kids are all doing well,work is well,you know,work but I do like my job.Marriage is still intact despite some bumps in the road,financial difficulties are being overcome,bills are being paid early and there's even a bit of savings,not much but enough to see the light at the end of the tunnel and the light is getting brighter and brighter and the tunnel getting shorter and shorter. I get to work and everything is still going okay,have a chat with the other early starters,I love this time in the morning when the store is still closed and we're preparing for the days trade.I start filling the cabinet(I work in the deli of a supermarket) putting in the fresh chicken and start slicing and shaving the meats,I love doing the open and making the display look fresh and inviting. I go to walk towards the cool room and it feels like my left foot has stuck to the floor for a second or 2,I don't think too much of it but think I must have dropped something and trodden on it when I look,there's nothing there so I kind of shake me head and get back to what I'm doing.This happens a couple more times and it sticks just long enough for me to notice,but I've got to much to do so after a quick check of my shoe I get back to what needs to be done.
6 a.m Louisa my co-worker arrives we work together most mornings and have a great relationship,some times it's nonstop chat and laughs other times we work in quietness but always she's a great lady to work with.The "sticky foot" happens again and I mention it to Louisa and get her to check the bottom of my shoe to see if there's anything there.Nothing!!
I need to go upstairs to use the computer and as I step up with my left foot I keep catching the top of the stair with my toes,i remember thinking"That's weird!!" Didn't know then how weird my life was going to be! I just get on with my job and ignore the odd things that are happening,back in the deli I notice my left hand is not right,not sure how to word this but it was just a strange feeling,I'm left handed so this strangeness became really obvious when I went to write something and had trouble writing and holding the pen.The problem with my foot started to move up my leg and I was beginning to have trouble walking,so I decided to go home when my manager started at 8a.m.By the time Brett arrives I am unable to stand without holding on to anything and my left hand is barely useable,but I've got work to do so try to get things done as best I can.
I ring Dad to pick me up as I know I won't be able to drive when I can barely walk,then I ring Robert to meet me at Mum and Dad.s place they live closer to work so i figured it would be easier this way. Robert and I decide to go to the hospital rather than the doctors things seem to be a bit more dramatic than a simple doctors visit!.....Need to stop for a bit,will continue later.This will definately need to be edited a great deal if it's use able but it's the only way I can keep my thought in order,head is buzzing I'll write more when it stops :o)
6 a.m Louisa my co-worker arrives we work together most mornings and have a great relationship,some times it's nonstop chat and laughs other times we work in quietness but always she's a great lady to work with.The "sticky foot" happens again and I mention it to Louisa and get her to check the bottom of my shoe to see if there's anything there.Nothing!!
I need to go upstairs to use the computer and as I step up with my left foot I keep catching the top of the stair with my toes,i remember thinking"That's weird!!" Didn't know then how weird my life was going to be! I just get on with my job and ignore the odd things that are happening,back in the deli I notice my left hand is not right,not sure how to word this but it was just a strange feeling,I'm left handed so this strangeness became really obvious when I went to write something and had trouble writing and holding the pen.The problem with my foot started to move up my leg and I was beginning to have trouble walking,so I decided to go home when my manager started at 8a.m.By the time Brett arrives I am unable to stand without holding on to anything and my left hand is barely useable,but I've got work to do so try to get things done as best I can.
I ring Dad to pick me up as I know I won't be able to drive when I can barely walk,then I ring Robert to meet me at Mum and Dad.s place they live closer to work so i figured it would be easier this way. Robert and I decide to go to the hospital rather than the doctors things seem to be a bit more dramatic than a simple doctors visit!.....Need to stop for a bit,will continue later.This will definately need to be edited a great deal if it's use able but it's the only way I can keep my thought in order,head is buzzing I'll write more when it stops :o)
Sunday 4 March 2012
Saturday 3 March 2012
Rainbows,Butterflies and Lollypops?Not me :o)
Today is a bad day and I feel overwhelmed with the enormity of it all,tomorrow is another day and my fight will be back.I'm just so very grateful to have somewhere to go to have a bad day and not feel as if I need to justify how I am.I tend not to join groups or talk much as I try not to burden other people with my problems,people have their own stuff to deal with,they don't need me dumping my crap too! Plus I can't be all rainbows,butterflies and lollypops,that's not my nature so I would come across as exceedingly fake.
I was asked to tell my story for the MS Network magazine but so far I haven't,I'm not very inspiring and can be downright grumpy!!(hard to believe I know,but yeah,I can be grumpy!) I don't think people who are fighting MS need to read a story from someone who's far from positive and a long way from inspirational.My biggest achievement in the last 6 months was walking to the letter box unaided,a long way from a marathon!!
Sometimes I just grow tired of the battle and need to lower my sword and rest,sometimes I need to feel the bad feelings and regather my strength to go forward again.Sometimes I just need to say "Woe is me" Sometimes I need a shoulder,instead of lending mine to everyone else.Sometimes,just sometimes I need to sing "What about me,it isn't fair.I've had enough and I want my share" Sometimes I just need to drop the brave,strong,courageous face.Sometimes I just feel sad.Today was a "sometimes" day.
Today I need to vent,despair and lay down my sword,tomorrow I will pick it up again and continue the fight.......
I was asked to tell my story for the MS Network magazine but so far I haven't,I'm not very inspiring and can be downright grumpy!!(hard to believe I know,but yeah,I can be grumpy!) I don't think people who are fighting MS need to read a story from someone who's far from positive and a long way from inspirational.My biggest achievement in the last 6 months was walking to the letter box unaided,a long way from a marathon!!
Sometimes I just grow tired of the battle and need to lower my sword and rest,sometimes I need to feel the bad feelings and regather my strength to go forward again.Sometimes I just need to say "Woe is me" Sometimes I need a shoulder,instead of lending mine to everyone else.Sometimes,just sometimes I need to sing "What about me,it isn't fair.I've had enough and I want my share" Sometimes I just need to drop the brave,strong,courageous face.Sometimes I just feel sad.Today was a "sometimes" day.
Today I need to vent,despair and lay down my sword,tomorrow I will pick it up again and continue the fight.......
I am not strong or brave or courageous,I am not an inspiration,I am not a positive person. I am angry,frustrated pissed off,fed up,bewildered,negative,I can not find a bright side,I can not keep my chin up,not worry and be happy.I feel betrayed by my body and brain,let down by myself,maybe I shouldn't feel this way but I do.I'm tired of fighting, tired of trying,tired of not understanding a disease I have,I'm tired of reading positive inspirational stories of wonderful people dealing with this and being happy little rays of sunshine to everyone around them.Obviously I'm not one of them!
I hate that I have MS,I hate that my whole life has been turned upside down and I have lost control of most of it,I hate that I needed to give up work,I hate that my license was taken from me and I need a medical clearance every year to keep doing something I'm good at and have been doing since I was 16.I hate that my children have seen and heard me weeping and broken,I hate that my husband has had to learn how to shop and cook,I hate that financially this has been a huge blow and we are struggling so badly,I hate all the forms that need to be filled in for even the simplest of help.I hate the intrusion of strangers into almost all facets of my life,I hate that young girls my daughters age are asking me details of my bladder and bowel.I hate that men I don't know get to ask personal questions.Yes I know they're medical proffesionals and it is their job,doesn't mean I have to like it.I am tired and angry and confused I think most of all though I am afraid,of the future,of the unknown.
I hate that I have MS,I hate that my whole life has been turned upside down and I have lost control of most of it,I hate that I needed to give up work,I hate that my license was taken from me and I need a medical clearance every year to keep doing something I'm good at and have been doing since I was 16.I hate that my children have seen and heard me weeping and broken,I hate that my husband has had to learn how to shop and cook,I hate that financially this has been a huge blow and we are struggling so badly,I hate all the forms that need to be filled in for even the simplest of help.I hate the intrusion of strangers into almost all facets of my life,I hate that young girls my daughters age are asking me details of my bladder and bowel.I hate that men I don't know get to ask personal questions.Yes I know they're medical proffesionals and it is their job,doesn't mean I have to like it.I am tired and angry and confused I think most of all though I am afraid,of the future,of the unknown.
hosekeeping
This is my place to say what I need to say,I've isolated myself and don't spend time with too mamy people these days.My speech being off and forgetting what I want to say,or losing the words I was going to use really piss me off ,I get frustrated with myself and then it gets worse.I also to some extent have lost my "filter" you know what I mean that thing that stops you from saying something that is probably innappropriate .My own insecurities and lack of self esteem has made it even harded for me with all this I already had enough trouble meeting and talk ing to people now with the MS stuff thrown in it's even tougher to just relax and socialize.
This is going to be hard to,as I have to force myself to just type and not keep checking for spelling and punctuation errors(yes,I know there are a couple up there!) But I have to allow myself the freedon not to get bogged down in details and just get my thoughts out,I need to let my thoughts flow and if I keep stopping to edit the hand tingles will take over and I'll need to stop before I actually get anything typed out!
You are welcome to read this but at some point this will probably get ugly I'm not going to monitor my thoughts or my feelings or my language,I am going to be honest truthful and sometimes I might say things that offends other people if that happens to you please just quietly leave and stop reading.
This is MY place to express myself without fear of judgement,I have isolated myself in the world,here I have given myself permission to just be and say what I need.
This is going to be hard to,as I have to force myself to just type and not keep checking for spelling and punctuation errors(yes,I know there are a couple up there!) But I have to allow myself the freedon not to get bogged down in details and just get my thoughts out,I need to let my thoughts flow and if I keep stopping to edit the hand tingles will take over and I'll need to stop before I actually get anything typed out!
You are welcome to read this but at some point this will probably get ugly I'm not going to monitor my thoughts or my feelings or my language,I am going to be honest truthful and sometimes I might say things that offends other people if that happens to you please just quietly leave and stop reading.
This is MY place to express myself without fear of judgement,I have isolated myself in the world,here I have given myself permission to just be and say what I need.
Steroids again
This is going to be a way for me to process all my thoughts and feelings that I have trouble expressing out loud.It's hard for me to process what I am actually trying to get across at times,with the interruptions to my thinking and losing words I was going to say.I just need somewhere to try to express my self without worrying if the word I wanted to say was actually the word I used! I think it's going to be easier if I cut myself some slack and just type not checking for punctuation or spelling errors and constantly stopping to edit.Otherwise any brilliant insights I have are going to be lost!! (Hopefully I might get some brilliant insight!)
Anyway,It's nearly 6am and I've been up for 3 hours already,steroid insomnia has struck and I've done everything I normally do to try to sleep,so instead of chasing sleep I decided to give up on it for now,this will pass and so far apart from a bit of a nagging stomach I'm not doing too bad,haven't got majorly down on myself or bitten anyones head off yet! There's still time though,still 4 more days of prednisone to go.
MS,what the hell is that,all I knew of it was that my kids used to do the read-a-thon when they were in Primary school.That and Susan from "Neighbours" had just been told she had it about 3 weeks before,so there I was a bit relieved I suppose,it wasn.t a stroke or an anuerisn or a brain tumour,the other possible causes of the symptoms that had bought me to the hospital,so it wasn't that bad was it? I mean just give me the medicine I need and I'll be on my way.Dumb?Naive? Yep,now I know a lot different and learnt a lot about something I don't want to know about and 3 years in I'm still learning and I'm still waiting for that medicine(aren't we all?!) It's been a tough 3 years but I think I might just about be over my grief and anger and rage and confusion and Why me? Still who knows I certainly don't
Anyway,It's nearly 6am and I've been up for 3 hours already,steroid insomnia has struck and I've done everything I normally do to try to sleep,so instead of chasing sleep I decided to give up on it for now,this will pass and so far apart from a bit of a nagging stomach I'm not doing too bad,haven't got majorly down on myself or bitten anyones head off yet! There's still time though,still 4 more days of prednisone to go.
MS,what the hell is that,all I knew of it was that my kids used to do the read-a-thon when they were in Primary school.That and Susan from "Neighbours" had just been told she had it about 3 weeks before,so there I was a bit relieved I suppose,it wasn.t a stroke or an anuerisn or a brain tumour,the other possible causes of the symptoms that had bought me to the hospital,so it wasn't that bad was it? I mean just give me the medicine I need and I'll be on my way.Dumb?Naive? Yep,now I know a lot different and learnt a lot about something I don't want to know about and 3 years in I'm still learning and I'm still waiting for that medicine(aren't we all?!) It's been a tough 3 years but I think I might just about be over my grief and anger and rage and confusion and Why me? Still who knows I certainly don't
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