I feel like a burden.

[Chelseacord]

I was diagnosed at the age of 16 with Spino cerebrellar Ataxia after suffering symptoms from around 12years old, extensive family history and genetic testing. I have 2 wonderful children and a loving fiance, however the feeling of burdening my family is a heavy weight. All my life I have watched my family pass in some of the most horrible ways imaginable and cant help being petrified. My neurologist sends in registrars instead of her seeing me, so when something progresses, I rarely say (even though my symptoms are quite apparent) As a 23yr old woman I feel like 83 sometimes! Does anyone else have SCA2? I'd really appreciate some coping mechanisms. Thanks for reading xx

[nigelrheath]

As a late onset mild sufferer of SCA6 I can't begin to understand what you are going through from a personal level. However I can hear your distress and your wish to avoid being a burden on those you love.

I've noticed in life that physical challenges or disabilities are taken in different ways by the people they affect, much as ordinary illnesses are shrugged off by some and carry off others. I know I had a time of feeling sorry for myself when the consequences of my diagnosis sunk in. All the plans I had which I couldn't now achieve, etc.

Once I came to terms with this I realised there are many things I can still do, among them being friends to other people, helping them laugh and looking for the positives in a situation. I know this sounds a bit like "pull yourself together and get on with it" and in a way it is. We have to make the best of the life we have, no matter the deal we have got. I've met many people much worse off than me who cope with life and it's difficulties better than I could ever hope for. Having said that we all need a moment now and again to rail against the unkindness of fate and feel sorry for ourselves and at these times it's really helpful to have a listener, who will not judge, will not tell us 'worse things happen at sea' and will allow us the chance to air our frustration and distress. Often such a person is not close family as they already have their own burdens of guilt (it's not them), anger (it's such a nuisance), impatience (I've got my own life to get on with) and loss (what might have been).

When life takes something away it usually provides something else, but is not good at telling us what that something else might be. In your case you have a family who love you, who may want to help more but don't know what to do for the best and don't want to stop you doing whatever you can.

I worked once with a lady who developed breast cancer. She was the strongest member of her family and everyone always looked to her for guidance, advice and decisions. When she was disagnosed she dealt with it in a matter of fact manner and we devised various ways to keep her strong. Her family fell apart and didn't know what to do. So we made up some jobs for them. Granny was asked to look out for her grandson, son was asked to look out for grandad, Grandad was asked to look out for his son and so on. Once they all had something to do they stopped bothering the woman with cancer! You may need some practical help, who could do this best for you? You may need some physical comfort, e.g. back rub, foot rub or just a hug. Make this someone's job or let it be known this is a welcomed help.

Humour is the best way to deal with life's little difficulties. My aunt and uncle who lived into their mid nineties would laugh together all the time about his colostomy bag, her gluten intolerance and life in general. Focussing outside ouselves helps enormously too. Even better see what you can do to help others.

Sorry for the length of this reply. I hope there is something in here to help you and wish you all the best.

Nigel

[silkwood]

I know what u mean.I agree wiith the writer above.Finding things to do is harder and slower.My violent tremor excludes most things but I have to adapt everything and find a diifferent way of doing things.I get upset daily when I consiider myseelf a burden. But I ccould listen. I feeel ancient too and am only 55.

[wobblybee]

Hi Chelseacord

I'm no longer totally independent and have to rely on family for lifts etc.

Because of this I occasionally feel like a burden. But, it's only human

nature. Being mothers we're used to multi tasking and taking care of so

many things it's hard to admit we ourselves need help.

I have read that it's possible for members of the same family not to take

exactly the same road when it comes to progression and severity. But, I

can well understand your apprehension.

It is awful having to see different doctors at a hospital, especially when

you feel not taken seriously.

I have Idiopathic SCA but have to cope with similar challenges as yourself.

My symptoms started when my children were young, and it was difficult.

Best wishes xB

[february]

Dear Chelseaclord, Although I'm much older than you (61) , I want to tell you not to be so hard on yourself. People who love and care about you understand!!! You may be extra-sensitive due to watching other family members pass in "horrific" ways, as you say. Years ago, I talked with a professional, as I was having a difficult time coping with my ataxia, and this really helped me! Just a thought... Try to live your life one day at a time, even though this is difficult to do. A saying I repeat to myself almost daily is, "a woman is like a tea bag, as she never knows how strong she can be until she gets into hot water"...,ha! You really do have your whole life ahead of you, just do the best you can! You are NOT alone in your journey...,Hugs ;o)

[Litty]

Everyone gets bad days and feels a burden. You are certainly allowed to. Try to find someone to talk to. Many of my friends and family have used GOOD psychologists at some point and it has really helped.

We need to try and see the positive. At least we are still here and incredibly lucky to have families that love us. Try to make things as easy for them as you can and help them in return. It is a 2 way love and hopefully we would do it in return if they had ataxia.

Hope this helps : )