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.
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