Today I've come out of the re-hab centre. I'm too exhausted to continue. My whole body seems to have gone into melt-down. I've the jitters in arms and legs, spasms all over, and however much a do my stretching excercises my musles go back to being rigid. My brain feels frazzled from the concentration.
Now the Dr at the centre has told me to rest for 3-4 weeks. No physio or excercises - only stretches.
The worst thing is she is not sure if I will feel any benefit afterwards this time. Last time after a recovery period a saw a vast improvement, but my illness has been accelerating so quickly. I really feel very frightened for the future. When I left the centre I can still picture the pity on the physio's face when I said goodbye, as she thinks that maybe it has all been for nothing. I feel exhausted and angry. The effort has been enormous and maybe to no avail.
I had memory tests too. I shall find out the results of those at my next meeting with Dr in one months time
I feel so frightened about the future
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wibblywobbly
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Hiya wibbly, nothing I can say to help you, only that you know I've read your entry, so don't feel alone. I too am scared and learning about my problems. As yet I know nothing of a rehab centre or its possible benefits, maybe I wont be offered that.
Weekends when we would go out and have fun are our yesterdays. Fine, sunny weather promised a picnic by a stream with the dogs playing or cricket in the background. (never my bag!). I must be grateful of the help available. How do people in less developed countries manage, I'll never know.
I may feel embarrased writing this later but sent with the best of intentions, perhaps it helps me? Ken.
Hiya! Ah you do seem to be having a rough time at the moment, I know how you feel, I have tried exercising and at first it all seems worth the effort then it becomes more and more of an effort. I havent done any exercises for a while during the winter, I don't function well in the cold, hope to try and start again, my GP calls what you are experiencing a "deterioration spurt" which explains how I feel when the same thing happens to me.Its hard I know and very scary, but you are not alone, hope this helps xx
You are not alone. I to worry about the future but it does no good, we can't change things. Oh that we could!!!!! I'm like you in that my ataxia has taken hold. Everyday there is something else. I dread the day. Never mind we keep going.
I am sorry you feel so dreadful and hope you are better soon. Always remember we are here and will help if we can. Keep your chin up.
My Ataxia too has taken hold.I am going for counselling soon to help me make the adjustments.
You are not alone.It is not easy.
My condition too has progressed quickly.Luckily my husband is an optimist and shows me things and talks about things I can still do but I do feel the depression.
It's good to feel you're hot alone. Quite often I think that I am getting no where, however, I managed a two week, fairly hectic holiday, just a few weeks ago. Although I came back thoroughly worn out, so did everyone else. At the end of the day, all you're doing is trying to be fit enough to do the next thimg.
When I feel ''bad" I repeat one of my favorite sayings in my head several times, "a woman is like a tea bag, she never knows how strong she can be until she gets into hot water"! Of course, a man could use this saying also...,ha! I'm sorry you're feeling so "spent". Ataxia is very frustrating, challenging and the future can be uncertain! Fifi is right, worry doesn't change things. Try to be as positive as possible, even though it's extremely difficult. Don't give up or give in! Hopefully, with some rest, you'll feel better soon. You're not alone in your journey, as we all understand and are here for you! ;o)
Hi thanks everyone for your comments. I do feel a little better now, but the trembling in arms and legs comes back quickly if i do anything and my legs still keep going much more rigid than normal. Also start to feel quite ill
Felt sick in the car on the way home - only half an hour journey too. Just too tired for the visual thing. Have got a slight nystagmus so prob was that too. Though thankfully that doesn't seem to have got any worse lately.
I like your teabag saying February ;D.
I do usually work hard to be positive and will be better when i'm less tired. Usually i don't think too much of the future - does no good anyway. But in the centre felt even more obsessed about my illness and obviously was and still am very tired.
Nice to know that you are all there and understand. I'm no longer alone with this.
Have got great husband and friends, but they don't feel what i feel
you are very lucky to have a good husband and family to support you, I am single parent and my children think its not as serious as I make out. this week I have had to invest in a tri-walker. i'm very self concious about using it,especially with friends. its sems the disease has got progressively worse sincei was diagnosed since
december, I really frightened too. but i try and stay positive.
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To scoot or not to scoot...
Oxford Ataxia Centre at John Radcliffe Hospital
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