Feeling lost:(

My husband has been home 2 months and his ataxia varies some days he walks around although unsteady and does things for himself others he sleeps half the day just lies on the couch not moving I know he's having a tough time but I feel myself slipping into depression we have to small children I have to cook clean wash/ dress everybody I don't work anymore never see my friends never leave the house only to shop plus we have no money no help we've got to wait up to 4 months for physio it's so hard to motivate my husband as I can't even motivate myself! I know I sound selfish so selfish but I just needed a rant what gets me more is I can't even re assure him he will get better :(

12 Replies

  • Oh Paula, I really feel for you,

    Rant as much as you need to, frustration gets so bad at times, it's better

    just to let it out, a safety valve if you like. And stop telling yourself that

    you're selfish, you're not.

    If you're near an Ataxia Support Group you may find that helpful to both

    of you, meeting others coping with the same problems is surprisingly

    up lifting. If you can't get to a group, ring them. They'll advise and support

    you as best they can. Plus, they'll probably have a good idea of where to

    seek the best advice in the local area regarding your financial situation.

    Jay probably will sleep a lot and be very lethargic, it affected me like that at

    one time. I know it's the last thing you need with young children to care for

    as well, you must get very tired yourself. So, you need time out. A close

    family friend or relative might like to come and sit with the children and keep

    Jay company, just for a couple of hours. To allow you to just leave the house,

    do whatever, something to relax you and hopefully think about something else.

    You need to look after yourself as well Paula. xB

  • Thankyou I cried just reading your reply I do feel better just letting out my feelings as I don't say anything to jay I don't want him to feel like he's a problem or have any guilt that's what will happen I love him so much I can't upset him it's a cruel blow for both of us! I just needed a rant and a good cry I'm ok now thankyou xxx

  • It is very hard paticularly this time of year I think. Can you encourage him to join in with a family activity perhaps all going to the park with the kids. Some country parks do wheelchair hire and so do shopmobility or red cross

    I agree with wobbly bee you do need some time out for you too

  • I too know how your feeling, I have been living with Cerebellar Ataxia since I was born, some days are good, some are bad. I feel like I'm a burden, sometimes.....however I would encourage you to try and find a Ataxia group and also ring the national carers association, When I was finding things hard and I felt it unfair on my 23 year old to look-out for me.....I told him to talk to the carers association, he did and now he feels less stressed and knows there're only a phone-call away. In time your husband will get his motivation back and so will you.....nothing is better than having a good rant, trying to cope with someone who is ill, can be frustrating but your not alone.....:-)

  • hi, I couldn't think of anything useful to reply to the origional post as I myself am feeling a bit down about things but your post caught my eye. my 3 1/2 year old is still under diagnosis but has some type of ataxia & he has abnormalities of the celeberrum (cant spell) we are awaiting to see a nurologist but the consultant weve seen painted a very grim picture. he is beginning to realise he cant do the same things as his friends, im not going to lie to him but did wonder what were you told about what was wrong with you? what did you tell your friends because its actually other kids that ask more questions than he does?

    is there anythink that you could tell me that would help me understand how to be a good mum to a child with this condition? im finding it difficult because of his speech problems to understand how he is feeling, would be greatful for any reply, thanks x

  • hi

    firstly..... don't worry about your spelling ( we all have " off days " :-) ),

    secondly.....I don't think I can be of any help in making you a " good mum ", when I was born, nobody had heard of Ataxia, so all the doc's could say was " she's ill, she'll have difficulties, take her home and enjoy ( cruel words, but what doctors say when, they don't know )

    thirdly....my 23 year old is starting to do similar things, I say he is " unique ", he has his own way of doing things. Tell your son's friends and even their parents " he dose things in his own unique way " , and your PROUD of him !!!!!!!! So in my eyes everyone who either has ataxia or cares for someone with ataxia is unique.

    I hope my reply helps you in some way, sorry I can't be of more help but feel free to ask question and remember" the more you ask, the more you know "


    Helen aka twinkle2508

  • Dear Paula I agree with everything wobblybee says We are all in the same position and a good old grumble helps

    a lot Try phoning the helpline in Ataxia UK and I assume you get the news letter from them There are no easy answers but you sound such a caring person that anything we can say or do will hoipefully help you Unfortunately we all have different types of Ataxia but at the end of the day just keep cheerful Much Love Tedjohnson

  • My dear Paula,

    Firstly, english is not my native language, so I apologize for speech errors in my message Your post has truly touched me, and I would like to share with you some encouraging thoughts. I also suffer from parkinsonism, caused by a rare genetic disease, called Fragile X Syndrom. I'm 43 years old, and it's not really easy coping each day with my fisically limitations, but I'm happy to say that I don't feel depression. I try to not concentrate my attention in my dificulties, even if it is not easy I confess, but I consider my life, a precious gift. My husband try also to do his best, bringing me an helpfully support.

    I try to understand your hard situation, Paula, but you can believe that you're not alone. You can deal with yours challenges. Recently, I read these following words: YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS THE ONLY CHOICE YOU HAVE.

    The following link will bring you a very pratical information: jw.org/en/publications/maga...

    Your family is wonderful and needs you, that's why you can't give up. I sincerely hope that I bring you a way to keep smiling to life, suffering wil not be forever, best days are coming...

    With all my affection, be corageous and STRONG!

  • Hi, i know you feel like your hitting your head on the wall alot, both as the ataxia person and the family around them. my family will tell you i was an absolute nightmare when i was first diagnosed (13 years ago) as i had alot of anger but now i feel ive accepted it but it did take ages. if it help i have depression to but mines stable with medication so theres hope. depression makes you very sleepy but sometimes you haveto fight it as you wont sleep at night - i learnt the hard way. i do recommend contacting ataxia.uk to join a group or see if they just have someone to talk to 1 to 1, i do 1 to 1 with newly diagnosed if i can help?

    it may help to let him know of 'success stories' of ataxia? might show him ataxia isnt an end there is stuff u can do. just an idea.

    feel free to message me if i can be a help?

  • Dear Jayswife-24, Vent all you'd like on this site. I have ataxia (diagnosed eleven years ago) and it's not only extremely frustrating and challenging for me, it is also taxing on my husband (bless him). Therefore, I understand, as well as everyone on this site! As other's have said, you need some time for yourself, and a trusted relative or friend to take care of your children and visit with your husband would be helpful, if possible. Also, if you have anyone you could talk with (a clergy person at your/a church) without being be an expense, may help you and your husband. As Nikkistowe said, It also took me years to accept my ataxia, and due to the fact that it's progressive, I have to keep changing my ways of acceptance! As Wobblybee said, an ataxia support group may be helpful to you and your husband (there are so many in the UK, as I live in the States). Remember, you and your husband are not alone in your journey! ;o)

  • Thankyou so much for your kind reply's and encouragement (hugs x)

  • Lots of excellent advise. He needs time and encouragement and you need to rant and have a break too. It will get better : ) X

You may also like...