I'm stuck,well and truly stuck.I have nothing to say until I go to bed at night and then the thoughts start jumbling again.
Strange disease this,I get incredibly tired,so tired it's too hard to blink,but then I go lay down and can't sleep at all..Then my brain starts,but it's thoughts I can't catch hold of again,I really should get up and start typing,maybe then it will stop.Maybe I'll stop thinking and be able to sleep.Maybe then I'll stop tossing and turning and just be able to find a comfortable spot and sleep.I'm too hot with the quilt on,too cold with it off.2 pillows is too high,1 pillow is too low. No pillows,is awful. I spend most of the night pushing the quilt on and off,taking pillows away and putting them back,switching from one side to the other,try my back,then roll over to a side again .Try laying on my stomach,that doesn't work either.
I am stuck but everyone time I look at that wall it still seems impossible to get through.
Monday 30 April 2012
Thursday 26 April 2012
Sitting
I have decided to stay on this side of the wall,I am going to sit with my back resting against it and enjoy the view from this side.The birds still sing,the sun still shines and what gaurentees do I have that things will be any better the other side? Life could be even worse,I've been searching for something better but the other side of that wall could be worse.Anyway the wall is too high to climb over,too wide to go round,too deep to dig under,too thick to break thru.
Okay so maybe things aren't so good this side but at least I already know that.I'm too tired for anymore.
Okay so maybe things aren't so good this side but at least I already know that.I'm too tired for anymore.
The Wall
I think I know what marathon runners mean when they talk about hitting the wall.I've reached a point where I honestly don't think I can do this anymore.I'm so damn tired of dealing with all this,the physical problems,the emotional turmoil,the financial issues,the burden I am to my husband,the fact that my children help and support me instead of the other way round,the way it's meant to be.I'm tired of bitching and whining and moaning,I'm tired of dealing with crap.I hate that my life has been one disaster after another.I hate that people have thought that it was okay to treat mt badly,to abuse me,hurt me,lie to me.I hate that I still feel this shit even after all this time.Doesn't matter how hard I try I can never seem to be free of all these thought and emotions,I still can't stop myself being afraid of everything.
Doesn't matter what I try or how hard I work I can't get thru this.Can't get thru it,can't get over it,it's too high.Can't go round it,it just goes on for ever there is no way around. I don't know what to do anymore.
I'm just too tired to care anymore,too tired to bother.
Doesn't matter what I try or how hard I work I can't get thru this.Can't get thru it,can't get over it,it's too high.Can't go round it,it just goes on for ever there is no way around. I don't know what to do anymore.
I'm just too tired to care anymore,too tired to bother.
Tuesday 24 April 2012
Back to the beginning
Sorry I'm jumping all over the place with this.I just write what my brain wants me too and even though it's a pain in the arse that it's all over the place I can't write what I don't feel like writing.Somewhere,somehow that makes sense!
So I'm lying in the hospital bed scared,confused,not sure what's going on .I'm oh so tired but still can't sleep.thoughts are racing and swirling round and round in my head "MS,Multiple Sclerosis,MS,What the hell is this? When can I go back to work? Shit! My gall bladder op is next week,wonder if I can still have that? MS,Susan on Neighbours has that,can't be to bad.Kids did the read-a-thon for that.What does it mean?" So I've got all these thoughts jumbling over the top of each other,not really catching hold of any of them long enough to get any clarity or answers to them and I have no idea what the answers are anyway!
It's really hard to go back and remember how I was feeling and thinking back then but I really think it's important for me to do it.To acknowledge who I was and how hard it was for me and my family.In some ways to honour us and how far we've come,what we've been thru and how we've stuck together.
I get very confused now,information overload! I can't remember names,I can see their faces clear as day but cant think who they are or what order they came.I know an MS nurse,it might have been Pam,or the other lady who's name I have no idea of,I know she was amazing and helped me heaps,just wish I could remember who she was!Anyway who ever it was,arrives at the hospital and talks about MS and the society,gives me information brochures and tries to answer some of our questions but I know for most of it I sort of wasn't really there.I think I'd drifted into a kind of out of body state by now,Guess it was a protective thing that happened to stop my brain from exploding.I just had no idea what to think or feel or say,I just wanted to go to sleep and hope that the nightmare would be over when I woke up.
Sometimes I still hope that will happen.........
So I'm lying in the hospital bed scared,confused,not sure what's going on .I'm oh so tired but still can't sleep.thoughts are racing and swirling round and round in my head "MS,Multiple Sclerosis,MS,What the hell is this? When can I go back to work? Shit! My gall bladder op is next week,wonder if I can still have that? MS,Susan on Neighbours has that,can't be to bad.Kids did the read-a-thon for that.What does it mean?" So I've got all these thoughts jumbling over the top of each other,not really catching hold of any of them long enough to get any clarity or answers to them and I have no idea what the answers are anyway!
It's really hard to go back and remember how I was feeling and thinking back then but I really think it's important for me to do it.To acknowledge who I was and how hard it was for me and my family.In some ways to honour us and how far we've come,what we've been thru and how we've stuck together.
I get very confused now,information overload! I can't remember names,I can see their faces clear as day but cant think who they are or what order they came.I know an MS nurse,it might have been Pam,or the other lady who's name I have no idea of,I know she was amazing and helped me heaps,just wish I could remember who she was!Anyway who ever it was,arrives at the hospital and talks about MS and the society,gives me information brochures and tries to answer some of our questions but I know for most of it I sort of wasn't really there.I think I'd drifted into a kind of out of body state by now,Guess it was a protective thing that happened to stop my brain from exploding.I just had no idea what to think or feel or say,I just wanted to go to sleep and hope that the nightmare would be over when I woke up.
Sometimes I still hope that will happen.........
Monday 23 April 2012
Invisibility
After I was attacked all those years ago I needed to hide myself,I needed to protect myself and keep myself safe.My heart my feelings my emotions needed to be protected from more damage.
I needed to keep people away from me so I put on weight,being bigger on the outside seemed to me to make it harder for people to get thru to the real me,the stuff that could be hurt.It made sense to me and to some degree still does.
I kept my weight at an "invisible"level,big enough to not draw attention to myself for being in any way attractive,but not so big as to be noticeable as "Look how fat that woman is" (Geez I sound shallow) At time i would hate myself so much for being fat,that I would start a diet or an exercise program so I could feel better about myself,trying to change the outside instead of working on the inside.Every time I lost some weight to the point that people noticed I would sabotage myself and stop exercising and eat all the wrong things again,until my weight got back to my "safe"level.
Then I got MS! It's hard to be invisible when you need a walker to get around,I used to hate it.I felt old,cos let's face it.usually only elderly people used them.
So my thinking changed I didn't want to be the fat disabled lady(Believe me,I know how bad this sounds but I'm being honest) and really my walker became my protection.Pushing it around in front of me is like a shield,I do need a bigger personal space cos it's me and my walker not just me. I'm trying to lose weight and it's so hard! There's only so much food you can cut out and I need to exercise,very hard when you have no strength or balance.I've done a lot of hard work on the inside stuff,worked on a lot of my problems and realized how my thinking has affected me.How I've hurt me,by being angry at me and hating myself so much for so long.I don't want to be invisible any more,not that I want to be noticed so much but I want to be free of all the stuff that's held me back from living life to the fullest.I want the outside of me to reflect what's inside.I don't know if any of this makes any sense.
I am learning to like myself,well at least not hate myself and I want to show it.
I needed to keep people away from me so I put on weight,being bigger on the outside seemed to me to make it harder for people to get thru to the real me,the stuff that could be hurt.It made sense to me and to some degree still does.
I kept my weight at an "invisible"level,big enough to not draw attention to myself for being in any way attractive,but not so big as to be noticeable as "Look how fat that woman is" (Geez I sound shallow) At time i would hate myself so much for being fat,that I would start a diet or an exercise program so I could feel better about myself,trying to change the outside instead of working on the inside.Every time I lost some weight to the point that people noticed I would sabotage myself and stop exercising and eat all the wrong things again,until my weight got back to my "safe"level.
Then I got MS! It's hard to be invisible when you need a walker to get around,I used to hate it.I felt old,cos let's face it.usually only elderly people used them.
So my thinking changed I didn't want to be the fat disabled lady(Believe me,I know how bad this sounds but I'm being honest) and really my walker became my protection.Pushing it around in front of me is like a shield,I do need a bigger personal space cos it's me and my walker not just me. I'm trying to lose weight and it's so hard! There's only so much food you can cut out and I need to exercise,very hard when you have no strength or balance.I've done a lot of hard work on the inside stuff,worked on a lot of my problems and realized how my thinking has affected me.How I've hurt me,by being angry at me and hating myself so much for so long.I don't want to be invisible any more,not that I want to be noticed so much but I want to be free of all the stuff that's held me back from living life to the fullest.I want the outside of me to reflect what's inside.I don't know if any of this makes any sense.
I am learning to like myself,well at least not hate myself and I want to show it.
Saturday 21 April 2012
Not angry
Yesterdays entry was not written in anger.It was matter of fact,this is how it is.Seems that a lot of the people I know with MS are struggling at the moment,having relapses or increased symptoms.Some of them have been hit pretty hard.
I've joined a few online support groups and they have been awesome,just knowing other people feel like I do has been amazing,like I'm not alone.It doesn't make things stop being the way they are but it is so good to not feel isolated and lonely.I have great support from my family and friends in real life,they are loving and caring and try to understand.I love and appreciate them very much and they get to escape.They can go out and get away from this,I'd love to do that,take it off and go run amok outside for awhile! I don't think I'd come back,if I could take MS off for awhile and be "normal" there is no way in hell I'd come back and put it back on!!
The people I've met in the groups truly get it,they know what it is to feel as I do,so yesterdays entry was just saying it like it is.Not trying to sugar coat things,not saying "I'm fine" when asked how I am.
You know it's tough and my group friends get it,we do our best to live the best life we can with this thing,never knowing when it will attack again.We swap tips on what's helped us, be it diet treatments vitamins or whatever but this thing is kind of a shape shifter.While there are a lot of similar symptoms it presents itself slightly differently for each person with it,so there is no"one size fits all" solution to it. Some people have a good reaction to one treatment someone else might feel like they've been hit by a truck,to the same drug.
They're called "Disease Modifying Drugs" some people swear by them others think anyone who takes them is crazy! It's all so variable and hard.
That's why I posted what I did yesterday and I stand by those words.
I've joined a few online support groups and they have been awesome,just knowing other people feel like I do has been amazing,like I'm not alone.It doesn't make things stop being the way they are but it is so good to not feel isolated and lonely.I have great support from my family and friends in real life,they are loving and caring and try to understand.I love and appreciate them very much and they get to escape.They can go out and get away from this,I'd love to do that,take it off and go run amok outside for awhile! I don't think I'd come back,if I could take MS off for awhile and be "normal" there is no way in hell I'd come back and put it back on!!
The people I've met in the groups truly get it,they know what it is to feel as I do,so yesterdays entry was just saying it like it is.Not trying to sugar coat things,not saying "I'm fine" when asked how I am.
You know it's tough and my group friends get it,we do our best to live the best life we can with this thing,never knowing when it will attack again.We swap tips on what's helped us, be it diet treatments vitamins or whatever but this thing is kind of a shape shifter.While there are a lot of similar symptoms it presents itself slightly differently for each person with it,so there is no"one size fits all" solution to it. Some people have a good reaction to one treatment someone else might feel like they've been hit by a truck,to the same drug.
They're called "Disease Modifying Drugs" some people swear by them others think anyone who takes them is crazy! It's all so variable and hard.
That's why I posted what I did yesterday and I stand by those words.
Friday 20 April 2012
The squatter from hell
MS is an unwelcome unwanted uninvited guest.It drops into your life and takes over.It is rude selfish cruel mean.
MS is demanding evil nasty vile.
MS wanders into your life and tries to destroy it,It looks around and sees what you love and tries to destroy that too.It sees who you love and puts out it's evil tentacles to them too.
MS wants to destroy bodies,relationships,people.It is malignant.
MS doesn't discriminate,It isn't sexist or racist or homophobic.MS doesn't judge.It will take anyone,all you need to be for MS to move in is human.
MS doesn't care if your male or female,black or white,straight or gay.MS doesn't care if you are religious or atheist or somewhere in between.MS doesn't care.
MS takes over and sits back and waits for everyone to dance attendance on it.It steals the remote,wants you to cook for it,clean for it,wash for it.
MS is a bitch a bastard a fucking arsehole.
MS is demanding evil nasty vile.
MS wanders into your life and tries to destroy it,It looks around and sees what you love and tries to destroy that too.It sees who you love and puts out it's evil tentacles to them too.
MS wants to destroy bodies,relationships,people.It is malignant.
MS doesn't discriminate,It isn't sexist or racist or homophobic.MS doesn't judge.It will take anyone,all you need to be for MS to move in is human.
MS doesn't care if your male or female,black or white,straight or gay.MS doesn't care if you are religious or atheist or somewhere in between.MS doesn't care.
MS takes over and sits back and waits for everyone to dance attendance on it.It steals the remote,wants you to cook for it,clean for it,wash for it.
MS is a bitch a bastard a fucking arsehole.
Thursday 19 April 2012
Infusion over
Tysabri done for another 4 weeks,not so good today.It's becoming harder and harder to find a good vein.This time the first attempt the gelco wouldn't go in properly so had to try another one.Was very reluctant to play nice but eventually went in,so today I'm gonna have 2 bruises which will spread all over my hand and down my fingers.Small price to pay if it keeps doing it's job and stopping new lesions happening.I'll have a bruised hand if it means no more holes in my brain!!
I might have to consider getting a port put in soon, if my veins keep getting so difficult to use.I'll have to look into it a bit more find out what it involves and how exactly it works.
Time to rest I think been a busy morning so far.
I might have to consider getting a port put in soon, if my veins keep getting so difficult to use.I'll have to look into it a bit more find out what it involves and how exactly it works.
Time to rest I think been a busy morning so far.
Filling up
Was laying in bed last night trying to sleep.My constant sleeping/resting seems to have stopped and now I'm back to struggling for sleep! Anyway, while I was wide awake but trying to sleep,I realized that being empty could be a good thing,when something is empty you get to fill it up with what ever you want!
Now i have a choice here,a big decision to make, I can either fill the emptiness that is me with good stuff or bad. I can find all the valid reasons to fill myself up with anger bitterness resentment self loathing. Or I can try a new and different way and fill myself up with good stuff,peace joy gratitude happiness etc etc.
When you fill something up sometimes you overfill and the excess spills out and splashes on anything that's close by,I think I want to overfill myself with good stuff.I think I want people near me to be splashed with good stuff.I think they've been contaminated with the bad stuff enough.
Anyway,we'll see,could be interesting! Okay, got a Tysabri infusion this morning,need to go and make myself fit to leave the house!
Now i have a choice here,a big decision to make, I can either fill the emptiness that is me with good stuff or bad. I can find all the valid reasons to fill myself up with anger bitterness resentment self loathing. Or I can try a new and different way and fill myself up with good stuff,peace joy gratitude happiness etc etc.
When you fill something up sometimes you overfill and the excess spills out and splashes on anything that's close by,I think I want to overfill myself with good stuff.I think I want people near me to be splashed with good stuff.I think they've been contaminated with the bad stuff enough.
Anyway,we'll see,could be interesting! Okay, got a Tysabri infusion this morning,need to go and make myself fit to leave the house!
Empty
Yep,that's me at the moment,running on empty.Feeling nothing thinking nothing,just empty. Maybe this is a kind of reaction to all the pouring out of stuff I've been doing lately,maybe I just need to sit and let myself catch up with myself.I just feel like I'm going thru the motions of life at the moment...When you see someone you say hello and smile,when something is funny you laugh,this is what other people do,so this is what I do.I've let go of the anger that's been driving me and now there is nothing but emptiness,at least with anger I was feeling some thing,now there's nothing,just empty,I don't like it.
Tuesday 17 April 2012
I never know what to call these things :o)
The last few weeks has been amazing for me,I've learnt so much and opened up my life to strangers,anyone who know me in real life knows I just don't do that.I'm very wary of letting people close,been hurt too much in the past so I've built walls around myself and my heart.
I joined a lot of online support groups and have been meeting people from all over the world who I have nothing in common with and know nothing about except that we have MS,but that linking together and fighting the battles with back up has really made a difference to me and how I think and feel about myself .I think I might actually be worth liking a little bit!
I'm sitting here with my fingers hovering over the key board,not really knowing what to say but knowing I need to say something,I can actually feel the words but can't put them into any kind of sensible,readable pattern.I've got this kind of excitement running through me like I'm on the verge of something incredible but I just can't seem to grasp it and hold onto it long enough to know exactly what it is or what it means.It's frustrating me.
This must be what explorers felt like when they set out on a voyage of discovery,my voyage though is into myself.I could really use one of those miniaturized space rockets that I could get inside and start exploring me.See inside my brain(maybe do a bit of myelin repair work while I'm in there!) and pull out all the stuff that I'm thinking about but can't make sense of.I keep thinking maybe my blog has run it's course and maybe I'm done with it,maybe it's time to move onto some other way of expressing myself but deep down I know I'm not done.I think I've got rid of the top layer of clutter and it's time to dig down a bit further and get even more crap out.
Completely different subject and something that would have me jumping for joy of I could jump!! My daughter is pregnant WOOHOO!!!!! Yep,I'm going to be a Grandma,very exciting :o) Sarah and her partner Luke,are going to have their 1st baby in late October.It's awesome and I can't wait to meet this tiny person,I want to get as healthy as I can and do everything I can to limit my symptoms so I can be the best grandma to the baby as I can be.Blows me away that I can love someone this much who I have yet to meet.
I joined a lot of online support groups and have been meeting people from all over the world who I have nothing in common with and know nothing about except that we have MS,but that linking together and fighting the battles with back up has really made a difference to me and how I think and feel about myself .I think I might actually be worth liking a little bit!
I'm sitting here with my fingers hovering over the key board,not really knowing what to say but knowing I need to say something,I can actually feel the words but can't put them into any kind of sensible,readable pattern.I've got this kind of excitement running through me like I'm on the verge of something incredible but I just can't seem to grasp it and hold onto it long enough to know exactly what it is or what it means.It's frustrating me.
This must be what explorers felt like when they set out on a voyage of discovery,my voyage though is into myself.I could really use one of those miniaturized space rockets that I could get inside and start exploring me.See inside my brain(maybe do a bit of myelin repair work while I'm in there!) and pull out all the stuff that I'm thinking about but can't make sense of.I keep thinking maybe my blog has run it's course and maybe I'm done with it,maybe it's time to move onto some other way of expressing myself but deep down I know I'm not done.I think I've got rid of the top layer of clutter and it's time to dig down a bit further and get even more crap out.
Completely different subject and something that would have me jumping for joy of I could jump!! My daughter is pregnant WOOHOO!!!!! Yep,I'm going to be a Grandma,very exciting :o) Sarah and her partner Luke,are going to have their 1st baby in late October.It's awesome and I can't wait to meet this tiny person,I want to get as healthy as I can and do everything I can to limit my symptoms so I can be the best grandma to the baby as I can be.Blows me away that I can love someone this much who I have yet to meet.
Monday 16 April 2012
Random
I can't get my thoughts sorted,just gonna type see what comes out,it's 7.25 a.m. Tuesday morning. Another beautiful day ahead which no doubt I'll sleep through most of it! Just had breakfast,coffee and 2 slices of pizza leftover from tea,which I microwaved cos I didn't want it cold.Yep,real healthy choice,but I'm sick of healthy.Sick of MS,sick of not having the freedom to just go for a walk if I want or go for a drive,I miss my independence.Not that I did a lot of alone stuff before but I COULD if I wanted too. Now I'm always having to rely on other people so much it's hard.
Aarrgh! This is too hard this morning,nothing is coming and the coffee machine wants some attention,might be back,who knows.My life is too unpredictable to make plans.
Aarrgh! This is too hard this morning,nothing is coming and the coffee machine wants some attention,might be back,who knows.My life is too unpredictable to make plans.
Sunday 15 April 2012
Writers block?
I've been sitting here for ages staring at a blank screen,I had all these thoughts I wanted to talk about but as soon as I opened the page up and picked up my pen!, they all disappeared,hmmm,writers block?! Don't think so,they're all still in there, just very jumbled at the moment and getting in each others way.It's like a bunch of kids in my head at the moment,jumping up and down,tapping me on the arm,hands being thrust in the air"Ooh,pick me,pick me!" And like kids striving for attention,I'm not sure which one to give it to first!!! I don't want to upset the ones who don't get to go first! Thoughts and ideas are funny like that,don't give them the attention they think they deserve,they'll go back into hiding and sulk for a bit.Guess I'll be rambling for a bit again while I try to give my thoughts some freedom.
It's late
Just gone 11.30p.m.I suppose I should go to bed but I'm wide awake.Looks like a long night ahead,all I've been doing the last week is sleeping and resting.Guess it's messed up my body clock so instead of being tired at night I'm all out of sync.
So my tattoo...not sure if I can explain it so someone else can understand but it wasn't just something I wanted to do it was something I Needed to do.It's sort of me accepting MS,in a way claiming back a bit of control of my life.Kind of saying "screw you MS,you might have some of me but you'll never claim my spirit".Hmm,I need to think about this some more cos I can't find the words to express myself properly at the moment.
The sword though,represents courage,it's on my right ankle as I am left handed.My sword needs to be on my right side so it's easily drawn for battle.It's all very symbolic and full of meaning for me.
It's also my way of being me,of breaking away from what people and society expect of a middle aged woman,I have to some extent suppressed me most of my life so I could be "acceptable" but life is to uncertain,to unpredictable to be anything other than who you are meant to be.
I wrote a facebook status earlier today and I want to put it in here too so I don't lose it,it's what I believe.
"I am not strong,but I am courageous.Courage is not the absence of fear,it's being afraid and being willing to live in spite of it.
I am afraid but I have the courage to keep living,to keep fighting,to keep hoping"
Think I might try to sleep now
So my tattoo...not sure if I can explain it so someone else can understand but it wasn't just something I wanted to do it was something I Needed to do.It's sort of me accepting MS,in a way claiming back a bit of control of my life.Kind of saying "screw you MS,you might have some of me but you'll never claim my spirit".Hmm,I need to think about this some more cos I can't find the words to express myself properly at the moment.
The sword though,represents courage,it's on my right ankle as I am left handed.My sword needs to be on my right side so it's easily drawn for battle.It's all very symbolic and full of meaning for me.
It's also my way of being me,of breaking away from what people and society expect of a middle aged woman,I have to some extent suppressed me most of my life so I could be "acceptable" but life is to uncertain,to unpredictable to be anything other than who you are meant to be.
I wrote a facebook status earlier today and I want to put it in here too so I don't lose it,it's what I believe.
"I am not strong,but I am courageous.Courage is not the absence of fear,it's being afraid and being willing to live in spite of it.
I am afraid but I have the courage to keep living,to keep fighting,to keep hoping"
Think I might try to sleep now
Friday 13 April 2012
Thursday 12 April 2012
Here I am!!
Did ya miss me?! I've been sleeping,a lot.When I haven't been sleeping I've just been lying in bed resting and dozing,it's been great!
When you haven't slept properly for so long you've forgotten when it last was,to sleep for 5 hours without waking is amazing! The most I've managed before now is 3 hours straight.The weather has turned cooler,autumn has arrived and with it comfy nights without need of the air cooler on all night( I think the electric company is going to suffer a huge profit loss!)I have just needed to rest the last few days,so I have,the house has suffered for it though.Living with 2 males who don't see dust or cobwebs can be a bit of a problem,but I'll get over it(lets hope anyway!) As long as the important thinks are clean I think I can live with it ( for a little while)
I forget where I'm up to and I don't think it's that important to me now,I had this real need to put things down in the "right"order and time sequence but I think it's lost it's importance for me now.We'll see,I'll probably be freaking out again soon and have to jump back in time to get things down the way it happened when it first happened.
My CCSVI research is still continuing,the more I read the more I want to know and the more interested in doing it I become.Part of it I think is that neurologists are generally dismissive of it and MS Societies are extremely cautious.Drug companies are against it,why endorse a procedure that has no profit attached to it? Yep,I'm still a cynic!!
My G.P. is willing to write me a letter of referral to a specialist who performs it so that's one hurdle out of the way,my main problem now is the doctor I know of is interstate so I will need to book flights and accomadation and stuff.
All problems that can be easily overcome if and when I'm ready,I'm not being my usual self with this,I know it's not a miracle cure and it may not make any difference but not doing anything won't make any difference either so I'm pretty sure which way I'm going to go.
Okay,bed is calling again,it's good to be back :o)
When you haven't slept properly for so long you've forgotten when it last was,to sleep for 5 hours without waking is amazing! The most I've managed before now is 3 hours straight.The weather has turned cooler,autumn has arrived and with it comfy nights without need of the air cooler on all night( I think the electric company is going to suffer a huge profit loss!)I have just needed to rest the last few days,so I have,the house has suffered for it though.Living with 2 males who don't see dust or cobwebs can be a bit of a problem,but I'll get over it(lets hope anyway!) As long as the important thinks are clean I think I can live with it ( for a little while)
I forget where I'm up to and I don't think it's that important to me now,I had this real need to put things down in the "right"order and time sequence but I think it's lost it's importance for me now.We'll see,I'll probably be freaking out again soon and have to jump back in time to get things down the way it happened when it first happened.
My CCSVI research is still continuing,the more I read the more I want to know and the more interested in doing it I become.Part of it I think is that neurologists are generally dismissive of it and MS Societies are extremely cautious.Drug companies are against it,why endorse a procedure that has no profit attached to it? Yep,I'm still a cynic!!
My G.P. is willing to write me a letter of referral to a specialist who performs it so that's one hurdle out of the way,my main problem now is the doctor I know of is interstate so I will need to book flights and accomadation and stuff.
All problems that can be easily overcome if and when I'm ready,I'm not being my usual self with this,I know it's not a miracle cure and it may not make any difference but not doing anything won't make any difference either so I'm pretty sure which way I'm going to go.
Okay,bed is calling again,it's good to be back :o)
Monday 9 April 2012
CCSVI
There's been a lot of media coverage the last couple of weeks about this procedure and I've been doing a lot of reading and searching for information about it.
I think I want to find a doctor here who does it,I know it's controversial and there are no guarantees.I know it's not a miracle cure but if it can give me some quality of life,then why not?
And if it doesn't work? Well I'm no worse of am I? Except maybe a few less dollars in my purse,but I have MS anyway I might as well try to live the best life I can..If this procedure does help,then I'll be living an even better life.
I think I want to find a doctor here who does it,I know it's controversial and there are no guarantees.I know it's not a miracle cure but if it can give me some quality of life,then why not?
And if it doesn't work? Well I'm no worse of am I? Except maybe a few less dollars in my purse,but I have MS anyway I might as well try to live the best life I can..If this procedure does help,then I'll be living an even better life.
Quiet
This is an entry about not blogging!
I need to rest,the eye pain is back and I think I need a quiet,lazy day of not much.No typing,no thinking,just resting.It's cool today,I can pull the quilt over me and just veg out.
I need to rest,the eye pain is back and I think I need a quiet,lazy day of not much.No typing,no thinking,just resting.It's cool today,I can pull the quilt over me and just veg out.
Sunday 8 April 2012
The next day
So I was alone,trying to sleep.The machine the lady next to me was hooked up broke the silence with it's continual beeping.Hospitals are not quiet places,my room is right nest to the ward entry and across from the nurses station.Doors bang and despite the fact I've been awake for as long as I have my brain won't stop and let me rest.It seems that every time I doze off,there is another noise that disturbs me.
Eventually I give up and it is morning and the neurologist shows up with a his entourage of underlings.They all crowd in while the neuro goes thru my chart,asks questions,hears my story.Does all the strength and balance tests,all those neurological tests,that I can't do.How hard is it to touch your nose then touch someones finger 2 feet away? For me then,impossible.I poked myself in the eye at least once!! Someone must have moved my nose during the night!! I can't hold my left arm up or my left leg,there is no strength at all and no feeling at all in most of my left foot,my big toe I can't move at all.Anything I try to hold in my left hand I drop.The neuro finishes all his tests and tells me I have MS.Okay,what's that? Multiple Sclerosis,yep,no worries,what's that? and how do I get rid of it? ( Hmmm,naive maybe?!) He tried to explain to me but I wasn't taking much in.He prescribed a high dose of IV steroids and said I'd need to stay in hospital for a few more days.
After they leave the nurse comes in and lets me know she's contacted the MS Society and someone will be coming in to see me as soon as they can.
And so life as I know it stops and changes and life with MS.
Eventually I give up and it is morning and the neurologist shows up with a his entourage of underlings.They all crowd in while the neuro goes thru my chart,asks questions,hears my story.Does all the strength and balance tests,all those neurological tests,that I can't do.How hard is it to touch your nose then touch someones finger 2 feet away? For me then,impossible.I poked myself in the eye at least once!! Someone must have moved my nose during the night!! I can't hold my left arm up or my left leg,there is no strength at all and no feeling at all in most of my left foot,my big toe I can't move at all.Anything I try to hold in my left hand I drop.The neuro finishes all his tests and tells me I have MS.Okay,what's that? Multiple Sclerosis,yep,no worries,what's that? and how do I get rid of it? ( Hmmm,naive maybe?!) He tried to explain to me but I wasn't taking much in.He prescribed a high dose of IV steroids and said I'd need to stay in hospital for a few more days.
After they leave the nurse comes in and lets me know she's contacted the MS Society and someone will be coming in to see me as soon as they can.
And so life as I know it stops and changes and life with MS.
Saturday 7 April 2012
The coffee machine,changing the subject completely
i need to lighten my mood a bit,I need to try to lift this heaviness of off me.I was going to take a break for a few days but that so far that has just given me time to dwell on all this.
Dredging up some pretty bad feelings and emotions has left me very raw and vulnerable.So I think I need to escape for awhile.
Any way.... When I was at work,my breaks consisted of beautiful coffee from Michells near the store I worked at.I think it's the thing I miss the most aboyt not working,My coffee,oh and the smokes and chatting with work friends who had their break the same time,hmm,I think most of the store issues that cropped up from time to time got resolved at that table!! Who needs manager meetings when you've got good coffee and people who like to chat( not for once,will I ever admit to gossip!)
Robert went on E-bay and found this amazing coffee machine really cheap,this thing in the shops is close to $700,we got it for $180!! It grinds the beans fresh,for each cup and makes awesome coffee. I love it and It drives me nuts.It's always wanting something! There's a digital display that comes up with messages.Fill water tank,Fill coffee beans,Empty dreg drawer Blah,Blah,Blah.It's a full time job keeping up with this thing and people think I'm a control freak! The obviously haven't met my coffee machine yet!! Sometimes it would be easier to go back to instant,yeah right.Somehow I know that's not going to happen :o)
Dredging up some pretty bad feelings and emotions has left me very raw and vulnerable.So I think I need to escape for awhile.
Any way.... When I was at work,my breaks consisted of beautiful coffee from Michells near the store I worked at.I think it's the thing I miss the most aboyt not working,My coffee,oh and the smokes and chatting with work friends who had their break the same time,hmm,I think most of the store issues that cropped up from time to time got resolved at that table!! Who needs manager meetings when you've got good coffee and people who like to chat( not for once,will I ever admit to gossip!)
Robert went on E-bay and found this amazing coffee machine really cheap,this thing in the shops is close to $700,we got it for $180!! It grinds the beans fresh,for each cup and makes awesome coffee. I love it and It drives me nuts.It's always wanting something! There's a digital display that comes up with messages.Fill water tank,Fill coffee beans,Empty dreg drawer Blah,Blah,Blah.It's a full time job keeping up with this thing and people think I'm a control freak! The obviously haven't met my coffee machine yet!! Sometimes it would be easier to go back to instant,yeah right.Somehow I know that's not going to happen :o)
Tired
Oh so tired,I was hoping I would rest and get some sleep.I hoped getting those thoughts out would give my brain chance to stop churning over and over,no such luck.Just seems to give it more room to churn,will I ever just sleep
Need a break
The previous post has affected me in a way that has surprised me.I need to take a break for a bit so I can work thru some stuff,don't know how long for.Just know I need to step back and rest.
Friday 6 April 2012
But wait,there's more!
Geez,this is taking so long and I haven't even got thru the first day yet.I'm beginning to wish I'd never started this whole process,it's taking me back to feelings I really don't want to feel again but for some reason I know I need to do this.maybe then I can finally accept that I have this horrible crap and be free of the anger.
A nurse comes into the room closely followed by Moe,Larry and Curly,previously known as Huey Dewey and Louie,she looks at me,looks at my name boldly posted above the bed.Picks up my chart,winks at me turns to the doctors,hands over the chart and politely points out that the patient they are looking for was here all the time.Okay so no more hiding or avoiding,I have to do this and no time like the present.
They start to explain what they're going to do and it is suggested that I sit on the edge of the bed and bend forward as far as I can,this is not easy as half my body has no feeling and I have no balance or strength to hold myself up.Robert hunches down in front of me and gets me to wrap my arms around his shoulders as he holds me round the waist to steady me.Unfortunately at some point I squeezed so tight I cut the blood supply off to his head and he nearly passed out!.
The doctor(must be Moe,he seems to be the one in charge of this whole catastrophe),starts to inject local anaesthetic around my lower back,where they're going to do the lumbar puncture.I can begin to feel myself going into a panic attack and I'm fighting hard to regain control,but all my usual techniques are forgotten as I'm so damn tired and stressed and frightened.My sugar levels are really low as it's been hours since I last ate and I start to cry.
They prepare everything and start to push the needle into my back,but it's not quite the right spot so withdraw and start again.I lose the plot and start to sob and weep loudly now,I've completely lost any semblance of normality,poor Robert is hunched down in front of me trying to hold me up and comfort and calm me,but I'm now in full on panic attack mode and start wailing.(Anyone trying to sleep in that ward,must have thought someone was being murdered) They try again and the pressure is incredible,I'm screaming,"It hurts!It hurts!" So that needle gets withdrawn and they put some more local anaesthetic in the spot.I am completely overwhelmed by the panic now and it triggers a massive flash back to the night some one broke into our house while Robert was at work and attempted to strangle me,then raped me.I have lost my mind.I hear the noise but don't realize it's coming from me,I am lost to reliving the evil that man did to me.I feel another needle go in and feel the pressure and the pain,then a voice some how cuts into my terror,One of the doctors says"Oh come on,it's not that bad!" Robert looks at me,kind of shuffles back a little bit and is glad that he's not the one about to be the subject of my rage.The air is thick with vile language coming from me I call him every name I cam think of and my anger is so intense I invent a few too,all 3 doctors are now backing away as I let fly with every bit of emotion I've been feeling all day.One of them very sensibly decides to put the whole disaster on hold and they call it quits and disappear as fast as they can.I'm sobbing,this damn thing still isn't done all I have to show for it is bruising and pain,that lasts for days.The nurse is wonderful,she's angry that they've put me thru this and says they should have stopped after the first attempt and taken me to x-ray to get a propper placement,it's obvious my spine is curved and they needed help to do it properly..She offers me a cup of tea and trys to find me something to eat(Please no egg!).Sarah turns up and Robert needs to go home he's almost as exhausted as I am,I think it's round about midnight or 1 am now and I've been awake nearly 24 hours,barely eaten and have just about gone stark staring mad and I still don't no what's wrong.The tea is amazing tastes like heaven and I need a smoke so Sarah finds a wheel chair and we go off.I don't want to go back.I don't want to do this any more but I do and try to get some sleep Sarah leaves and I lay there in the dark,alone.
I need a break,recounting this bit was very hard.
A nurse comes into the room closely followed by Moe,Larry and Curly,previously known as Huey Dewey and Louie,she looks at me,looks at my name boldly posted above the bed.Picks up my chart,winks at me turns to the doctors,hands over the chart and politely points out that the patient they are looking for was here all the time.Okay so no more hiding or avoiding,I have to do this and no time like the present.
They start to explain what they're going to do and it is suggested that I sit on the edge of the bed and bend forward as far as I can,this is not easy as half my body has no feeling and I have no balance or strength to hold myself up.Robert hunches down in front of me and gets me to wrap my arms around his shoulders as he holds me round the waist to steady me.Unfortunately at some point I squeezed so tight I cut the blood supply off to his head and he nearly passed out!.
The doctor(must be Moe,he seems to be the one in charge of this whole catastrophe),starts to inject local anaesthetic around my lower back,where they're going to do the lumbar puncture.I can begin to feel myself going into a panic attack and I'm fighting hard to regain control,but all my usual techniques are forgotten as I'm so damn tired and stressed and frightened.My sugar levels are really low as it's been hours since I last ate and I start to cry.
They prepare everything and start to push the needle into my back,but it's not quite the right spot so withdraw and start again.I lose the plot and start to sob and weep loudly now,I've completely lost any semblance of normality,poor Robert is hunched down in front of me trying to hold me up and comfort and calm me,but I'm now in full on panic attack mode and start wailing.(Anyone trying to sleep in that ward,must have thought someone was being murdered) They try again and the pressure is incredible,I'm screaming,"It hurts!It hurts!" So that needle gets withdrawn and they put some more local anaesthetic in the spot.I am completely overwhelmed by the panic now and it triggers a massive flash back to the night some one broke into our house while Robert was at work and attempted to strangle me,then raped me.I have lost my mind.I hear the noise but don't realize it's coming from me,I am lost to reliving the evil that man did to me.I feel another needle go in and feel the pressure and the pain,then a voice some how cuts into my terror,One of the doctors says"Oh come on,it's not that bad!" Robert looks at me,kind of shuffles back a little bit and is glad that he's not the one about to be the subject of my rage.The air is thick with vile language coming from me I call him every name I cam think of and my anger is so intense I invent a few too,all 3 doctors are now backing away as I let fly with every bit of emotion I've been feeling all day.One of them very sensibly decides to put the whole disaster on hold and they call it quits and disappear as fast as they can.I'm sobbing,this damn thing still isn't done all I have to show for it is bruising and pain,that lasts for days.The nurse is wonderful,she's angry that they've put me thru this and says they should have stopped after the first attempt and taken me to x-ray to get a propper placement,it's obvious my spine is curved and they needed help to do it properly..She offers me a cup of tea and trys to find me something to eat(Please no egg!).Sarah turns up and Robert needs to go home he's almost as exhausted as I am,I think it's round about midnight or 1 am now and I've been awake nearly 24 hours,barely eaten and have just about gone stark staring mad and I still don't no what's wrong.The tea is amazing tastes like heaven and I need a smoke so Sarah finds a wheel chair and we go off.I don't want to go back.I don't want to do this any more but I do and try to get some sleep Sarah leaves and I lay there in the dark,alone.
I need a break,recounting this bit was very hard.
Thursday 5 April 2012
On and on we go
Frustrating reading this,isn't it? All the stops and starts,the amount of detail that doesn't need to be there,the over use of exclamation marks and diversion to a different topic.Yep,really frustrating.Imagine how frustrating it is living like this!! Me telling a story..... "it was Monday,no hang on,I think it was Tuesday or maybe it was Monday cos I went to the doctors Tuesday and I wouldn't have gone out twice in one day Hmmm,maybe it was Wednesday" See what I mean? People are very polite though and although they feel like screaming and strangling me,most don't! For Pity's sake Alison,it doesn't matter what day it was just get to the point already!!!
Okay,continuing on. We get up to a 2 bed room,the other lady is asleep,actually she's semi comatose,poor thing. Get sorted out,obs get checked yet again.Still have no strength in my left side and if I raise my arm it just falls back down.This is scarey,you know?! It's now about 10.30-11 pm and I've been up since 4.15 a.m..I've been poked and prodded,had all sorts of tests,been in and out of different machines,spoken to so many people I've lost track of who is who,I've told them all exactly what's been happening countless times and still I'm none the wiser.I think at one point I told a cleaning lady what was going on,she was the most empathetic and compassionate of all the people I've spoken too,that's how I know she wasn't a doctor,she actually CARED and listened.
3 doctors march in,.the one from emergency is not with them.I think he gave up on me and passed me over to Huey,Dewey and Louie!
They want to see the lady who needs the lumbar puncture.I'm exhausted,fed up and can't take much more so I say " Oh her? I think she left! Yeah,I'm pretty sure she went home!!!" They believed me! It was so funny! The one at the front turned around to march out of the room and knocked into the other 2,who backed up and nearly fell over each other.Robert and I just looked at each other and burst out laughing!! I think we just needed to break the tension and have a tiny bit of normality,for a couple of minutes it was just us,being just us.
Sorry,got to stop.....stay tuned we're nearly done
Okay,continuing on. We get up to a 2 bed room,the other lady is asleep,actually she's semi comatose,poor thing. Get sorted out,obs get checked yet again.Still have no strength in my left side and if I raise my arm it just falls back down.This is scarey,you know?! It's now about 10.30-11 pm and I've been up since 4.15 a.m..I've been poked and prodded,had all sorts of tests,been in and out of different machines,spoken to so many people I've lost track of who is who,I've told them all exactly what's been happening countless times and still I'm none the wiser.I think at one point I told a cleaning lady what was going on,she was the most empathetic and compassionate of all the people I've spoken too,that's how I know she wasn't a doctor,she actually CARED and listened.
3 doctors march in,.the one from emergency is not with them.I think he gave up on me and passed me over to Huey,Dewey and Louie!
They want to see the lady who needs the lumbar puncture.I'm exhausted,fed up and can't take much more so I say " Oh her? I think she left! Yeah,I'm pretty sure she went home!!!" They believed me! It was so funny! The one at the front turned around to march out of the room and knocked into the other 2,who backed up and nearly fell over each other.Robert and I just looked at each other and burst out laughing!! I think we just needed to break the tension and have a tiny bit of normality,for a couple of minutes it was just us,being just us.
Sorry,got to stop.....stay tuned we're nearly done
Wednesday 4 April 2012
Wanting to get this done
It's early but I've got heaps to do today so I just want to write as much as I can while I'm feeling fairly well.I'm getting a cold,so this could be my last good day for awhile.
We continue to wait,different people come in during the day,to check obs and do various tests,I can barely stand,do you really think it's possible for me to rise onto my toes?! There seems to be lots of knowing glances and head nodding going on but no-one thinks I'm important enough to let in on what's going on.The day drags on,I've rung Sarah and filled her in with the little I know and she goes into big sister,filling in for Mum mode and picks David up after school and they come to visit for a bit.I've rung work and let them know I won't be in the next day but I should be good for Saturdays shift and I'll ring back if things change,I think at this point I'm just totally fed up and want to go home and pretend nothing is wrong. Looks like I'll be staying in overnight so Sarah,Robert and David leave to get some tea,and some stuff for me,and go pick my car up from work..
** I've got to the point now where I've lost the order of what happened when and who I've seen and spoken too so this will get a bit jumbly and confusing**
I think I've talked to Adam on the phone,or otherwise Sarah rang him.It must have been so hard for him to be away from home and getting this information,sketchy as it was.It's hard to know what's the best thing to do,ring him with only half details and leave him worrying or wait 'til we know for sure,but then he might feel that he's forgotten or not important enough to keep in the loop.
Anyway a doctor shows up again to tell me the neurologist(who I haven't seen) thinks they need to do a lumbar puncture,oh joy. I immediately go into panic mode(hey I've seen that done on enough shows to know it's not nice!!). I tell him no worries but you'll have to wait 'til my husband gets back,I need some support and I'm not doing it alone.
I ring him,and my Dad so as I can get some clarity into my freaking out mind.Doctor shows up again and says he can only wait 10 more minutes as his shift is nearly over.Oh my God!! How inconsiderate of me to not want some stranger(yes,I know he's a trained medical professional) poking needles in my back while I'm on my own)
**Due to another issue,I have a real problem with men I don't know,I particularly cannot stand men I don't know being behind me** I really need Robert with me,not because I'm being a bitch or difficult but because I know I will go into full on panic attack if he's not.
Robert gets back and I disappear outside with him for a smoke! I'm stressed,I'm preparing myself for something I don't want to do but know I need to do,so I need a smoke. Get back and an orderly is there to move me to the ward I'll be in over night,cool hopefully no-one lets the doctor know where I've disappeared too!!
**Need to stop,writing this bit out is really hard and I need a break.I'll be back later**
Hmm,I thought I posted this all ready,like this morning when I first wrote it!! Oh well,it's been a full on day and I don't feel like doing anymore now so I'll just post as it is
We continue to wait,different people come in during the day,to check obs and do various tests,I can barely stand,do you really think it's possible for me to rise onto my toes?! There seems to be lots of knowing glances and head nodding going on but no-one thinks I'm important enough to let in on what's going on.The day drags on,I've rung Sarah and filled her in with the little I know and she goes into big sister,filling in for Mum mode and picks David up after school and they come to visit for a bit.I've rung work and let them know I won't be in the next day but I should be good for Saturdays shift and I'll ring back if things change,I think at this point I'm just totally fed up and want to go home and pretend nothing is wrong. Looks like I'll be staying in overnight so Sarah,Robert and David leave to get some tea,and some stuff for me,and go pick my car up from work..
** I've got to the point now where I've lost the order of what happened when and who I've seen and spoken too so this will get a bit jumbly and confusing**
I think I've talked to Adam on the phone,or otherwise Sarah rang him.It must have been so hard for him to be away from home and getting this information,sketchy as it was.It's hard to know what's the best thing to do,ring him with only half details and leave him worrying or wait 'til we know for sure,but then he might feel that he's forgotten or not important enough to keep in the loop.
Anyway a doctor shows up again to tell me the neurologist(who I haven't seen) thinks they need to do a lumbar puncture,oh joy. I immediately go into panic mode(hey I've seen that done on enough shows to know it's not nice!!). I tell him no worries but you'll have to wait 'til my husband gets back,I need some support and I'm not doing it alone.
I ring him,and my Dad so as I can get some clarity into my freaking out mind.Doctor shows up again and says he can only wait 10 more minutes as his shift is nearly over.Oh my God!! How inconsiderate of me to not want some stranger(yes,I know he's a trained medical professional) poking needles in my back while I'm on my own)
**Due to another issue,I have a real problem with men I don't know,I particularly cannot stand men I don't know being behind me** I really need Robert with me,not because I'm being a bitch or difficult but because I know I will go into full on panic attack if he's not.
Robert gets back and I disappear outside with him for a smoke! I'm stressed,I'm preparing myself for something I don't want to do but know I need to do,so I need a smoke. Get back and an orderly is there to move me to the ward I'll be in over night,cool hopefully no-one lets the doctor know where I've disappeared too!!
**Need to stop,writing this bit out is really hard and I need a break.I'll be back later**
Hmm,I thought I posted this all ready,like this morning when I first wrote it!! Oh well,it's been a full on day and I don't feel like doing anymore now so I'll just post as it is
and a bit more
The MRI is over and I get back to "my" bay in emergency,I'm now able to walk a little better,well I can stand and kind of move my legs in something similar to what people call walking,so I decide I've been here long enough and it's been hours since I last had a smoke,I'm going to have one! Robert is annoyed at me cos i won't just lay down and wait for the doctor but he's been with me enough years to just go with it,besides he wanted one too!
As well as wanting a smoke I'm also now starving,It's now about midday and I've been awake for ages and haven't eaten,we go back inside and Yay! I get a lunch tray,Yay until I look at what they gave me! Soup that smells a bit tomatoey and 2 half sandwiches,one of which is egg.UGH egg,I can't stand egg sandwiches,The other is some kind of meat with this weird smelling relish on it.Fortunately there's a coffee!! and some peaches with custard on it.Robert had the sandwiches,I had a couple of spoons of soup and dug the peaches out from under the custard and that coffee was divine!!!
One of the doctors turns up with some good news,some of the test results are back and I don't have an anuerism or a brain tumour!! Well that's fantastic and I din't realize how scared I was 'til I wasn't anymore,but what do I have? Still need to wait for more results and some other doctors to look at things.so I get moved to the not so urgent part of emergency
I was hoping to finish this tonight but my head is buzzing si I need to stop now,hopefully I can get this done tomorrow
As well as wanting a smoke I'm also now starving,It's now about midday and I've been awake for ages and haven't eaten,we go back inside and Yay! I get a lunch tray,Yay until I look at what they gave me! Soup that smells a bit tomatoey and 2 half sandwiches,one of which is egg.UGH egg,I can't stand egg sandwiches,The other is some kind of meat with this weird smelling relish on it.Fortunately there's a coffee!! and some peaches with custard on it.Robert had the sandwiches,I had a couple of spoons of soup and dug the peaches out from under the custard and that coffee was divine!!!
One of the doctors turns up with some good news,some of the test results are back and I don't have an anuerism or a brain tumour!! Well that's fantastic and I din't realize how scared I was 'til I wasn't anymore,but what do I have? Still need to wait for more results and some other doctors to look at things.so I get moved to the not so urgent part of emergency
I was hoping to finish this tonight but my head is buzzing si I need to stop now,hopefully I can get this done tomorrow
Tuesday 3 April 2012
The saga continues
So when I left the story a couple of weeks ago,we were on our way to the hospital,I'm trying not to panic but I've watched enough medical shows to know something bad is happening to me.(Who needs doctors when you've got E.R.,All Saints,Grey's Anatomy etc.etc.?!) I really should be a doctor the amount of medical knowledge these shows have taught me!! Do you think I could Recognized Prior Learning credit,based on watching too much T.V.?!
Anyway,we get to the hospital,Robert stops right outside Emergency and goes to get a wheel chair,I don't need a wheel chair,I can walk.Yeah,right,sure you can.I hang onto the car and kind of shuffle and hop on my right leg as far as I can,then have to admit defeat and get in the wheel chair.We get to the triage window and I start explaining what's going on,next second the nurse is in front of me getting me to smile and lifting my arm,getting me to stick out my tongue,*Uh oh,they think I've had a stroke* I'm saying "I'm okay,I'll be fine" I get wheeled straight round to the back area,Wow,no waiting,this has to be serious. I get put in a bay and straight away I have nurse sticking needles in me taking blood and sticking round discs on my chest and I'm attached to a machine that goes Beep! There's someone else trying to get me changed into a gown,which really pisses me off,just leave me alone okay.I get taken to x ray,then have a cat scan.I get back to the bay and I'm busting for the toilet,so one of the nurses wheels in one of those commode chairs.The look of disgust on my face! I'm not using that! For one thing no-one's bothered to pull the curtain closed and there's people walking past all the time and of course everyone looks in to the bays as they walk past so there's no way I'm going to use it,even if the curtain is closed I'm not going to.I don't care if there might be something seriously wrong with me,I refuse to go to the toilet behind a curtain,with anyone marching in at any second.For another thing there's no toilet paper,what,you think I'm going to drip dry?! Anyway the nurse helps me get to a real toilet with a lock on the door,then stands there waiting,I'm thinking Get out! Please get out. I just want a couple of minutes to myself,I finally get to go on my own with the door locked and the nurse outside,knocking on the door asking if I'm okay.Umm,yeah,kind of,I'm left handed,I do everything with my left hand.This thing what ever it is has affected my left side,all of a sudden I've got to do simple things with my right hand,it's actually not very easy.Even tearing toilet paper from a roll is something that needs to be thought about(Go try it,next time you go to the loo,try doing what you normally do with your non dominant hand,it's hard).I get back to the bay and more doctors come in and I tell my story yet again,I get poked and prodded a bit more,lift my arms and legs(Not).Do all these other tests to check for strength and balance.Then go for an MRI( I'm pretty sure the devil himself invented that machine,horrible,evil thing it is)
Okay need to stop for a bit,hands are giving me trouble and this is taking a lot longer than i thought it would,I'll write more later
Anyway,we get to the hospital,Robert stops right outside Emergency and goes to get a wheel chair,I don't need a wheel chair,I can walk.Yeah,right,sure you can.I hang onto the car and kind of shuffle and hop on my right leg as far as I can,then have to admit defeat and get in the wheel chair.We get to the triage window and I start explaining what's going on,next second the nurse is in front of me getting me to smile and lifting my arm,getting me to stick out my tongue,*Uh oh,they think I've had a stroke* I'm saying "I'm okay,I'll be fine" I get wheeled straight round to the back area,Wow,no waiting,this has to be serious. I get put in a bay and straight away I have nurse sticking needles in me taking blood and sticking round discs on my chest and I'm attached to a machine that goes Beep! There's someone else trying to get me changed into a gown,which really pisses me off,just leave me alone okay.I get taken to x ray,then have a cat scan.I get back to the bay and I'm busting for the toilet,so one of the nurses wheels in one of those commode chairs.The look of disgust on my face! I'm not using that! For one thing no-one's bothered to pull the curtain closed and there's people walking past all the time and of course everyone looks in to the bays as they walk past so there's no way I'm going to use it,even if the curtain is closed I'm not going to.I don't care if there might be something seriously wrong with me,I refuse to go to the toilet behind a curtain,with anyone marching in at any second.For another thing there's no toilet paper,what,you think I'm going to drip dry?! Anyway the nurse helps me get to a real toilet with a lock on the door,then stands there waiting,I'm thinking Get out! Please get out. I just want a couple of minutes to myself,I finally get to go on my own with the door locked and the nurse outside,knocking on the door asking if I'm okay.Umm,yeah,kind of,I'm left handed,I do everything with my left hand.This thing what ever it is has affected my left side,all of a sudden I've got to do simple things with my right hand,it's actually not very easy.Even tearing toilet paper from a roll is something that needs to be thought about(Go try it,next time you go to the loo,try doing what you normally do with your non dominant hand,it's hard).I get back to the bay and more doctors come in and I tell my story yet again,I get poked and prodded a bit more,lift my arms and legs(Not).Do all these other tests to check for strength and balance.Then go for an MRI( I'm pretty sure the devil himself invented that machine,horrible,evil thing it is)
Okay need to stop for a bit,hands are giving me trouble and this is taking a lot longer than i thought it would,I'll write more later
Monday 2 April 2012
I wonder.....
When I was 13 I got the opportunity to go to New Zealand for 3 weeks with a group similar to Girl Guides that I was involved in.
It was amazing,we went to the North Island and I saw so many fantastic things,that I hope one day to go back and see if much has changed in 34 years(My guess? Yep,lots!!)
A couple of days before flying home we were in Auckland staying in a hotel and we walked into the city one night to get ice cream.We had to walk up hill to get back to where we were staying and I remember this awful heavy feeling came over me,everything seemed to take an almighty effort to do,even lifting the ice cream to my mouth was to hard.I chucked it in a bin cos I knew I couldn't eat it AND try to walk up the hill,I remember feeling that there was no way I could move my body properly and all I wanted to do was lay down and not move.I kept going and the effort of just moving my legs for each step was incredible,I looked up to see how much further and my eyes were "funny" I could see but it wasn't clear like normal.Everyone I was with were having a good time talking and laughing about the stuff we'd seen and done and I just wanted to cry but that was too hard to.If I started to cry I knew there would be no way I could get up the hill.
One of the women we were with noticed how quiet I'd become and asked me if I was okay,I told her I was fine and just tired,she walked beside me with her arm round my shoulders and the extra weight was almost my undoing.I trudged on and got back,crawled into bed,with my clothes on,I couldn't waste time to get changed,I just needed to rest and slept for hours.They had to wake me the next day and I was normally the first one up,ready to go.
I kept getting asked if I was okay and I would say I'm just tired and I've got a cold.I did have a cold a few days before hand but it had cleared up.Why didn't I say anything? Probably cos I was 13 a long way from home,with people who although really great I didn't know that well and I was scared and wanted my Mum!
I spent the last 2 days we were there sleeping heaps and resting when I wasn't asleep.
The heaviness lifted and by the time I flew home I was almost back to normal and the excitement of seeing my family and talking about the trip made me forget about the heaviness and how weird my eyes went.
I'll never know, so it's a bit stupid to speculate,but I wonder if this was my first encounter with MS?
It was amazing,we went to the North Island and I saw so many fantastic things,that I hope one day to go back and see if much has changed in 34 years(My guess? Yep,lots!!)
A couple of days before flying home we were in Auckland staying in a hotel and we walked into the city one night to get ice cream.We had to walk up hill to get back to where we were staying and I remember this awful heavy feeling came over me,everything seemed to take an almighty effort to do,even lifting the ice cream to my mouth was to hard.I chucked it in a bin cos I knew I couldn't eat it AND try to walk up the hill,I remember feeling that there was no way I could move my body properly and all I wanted to do was lay down and not move.I kept going and the effort of just moving my legs for each step was incredible,I looked up to see how much further and my eyes were "funny" I could see but it wasn't clear like normal.Everyone I was with were having a good time talking and laughing about the stuff we'd seen and done and I just wanted to cry but that was too hard to.If I started to cry I knew there would be no way I could get up the hill.
One of the women we were with noticed how quiet I'd become and asked me if I was okay,I told her I was fine and just tired,she walked beside me with her arm round my shoulders and the extra weight was almost my undoing.I trudged on and got back,crawled into bed,with my clothes on,I couldn't waste time to get changed,I just needed to rest and slept for hours.They had to wake me the next day and I was normally the first one up,ready to go.
I kept getting asked if I was okay and I would say I'm just tired and I've got a cold.I did have a cold a few days before hand but it had cleared up.Why didn't I say anything? Probably cos I was 13 a long way from home,with people who although really great I didn't know that well and I was scared and wanted my Mum!
I spent the last 2 days we were there sleeping heaps and resting when I wasn't asleep.
The heaviness lifted and by the time I flew home I was almost back to normal and the excitement of seeing my family and talking about the trip made me forget about the heaviness and how weird my eyes went.
I'll never know, so it's a bit stupid to speculate,but I wonder if this was my first encounter with MS?
Grateful
I can't seem to get out of this sadness and I'm sick of blogging misery so I'm going to try to be grateful for once.
After blogging my financial woes yesterday,I just wanted to acknowledge how grateful I am to live in Australia,I am eligible for disability support pension and although it doesn't come anywhere near the wage I used to earn at least it's something.What I receive each fortnight is based on my husbands wage so I really don't get much but I do have a pensioner concession card,this means I get medication extremely cheaply and even without the concession card because of the P.B.S. (Pharmecutical Benefits Scheme) the cost would not be astronomical. I am able to claim concessions for my council rates,electricity,phone and a couple of other things I forget,once again it's not shit loads but it does help a bit.
So if nothing else I am grateful that if I had to get this crappy disease,at least I got it in a country that makes life a tiny bit easier.
Not much but it's all I've got.
After blogging my financial woes yesterday,I just wanted to acknowledge how grateful I am to live in Australia,I am eligible for disability support pension and although it doesn't come anywhere near the wage I used to earn at least it's something.What I receive each fortnight is based on my husbands wage so I really don't get much but I do have a pensioner concession card,this means I get medication extremely cheaply and even without the concession card because of the P.B.S. (Pharmecutical Benefits Scheme) the cost would not be astronomical. I am able to claim concessions for my council rates,electricity,phone and a couple of other things I forget,once again it's not shit loads but it does help a bit.
So if nothing else I am grateful that if I had to get this crappy disease,at least I got it in a country that makes life a tiny bit easier.
Not much but it's all I've got.
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