I am having to reduce my working hours and am terrified about the future. How do people cope financially and emotionally?

I am a 46 yr old single mum and I work 16 hrs as a checkout operative. I was diagnosed with ataxia in 2012 and there are times that I find it very hard to cope. The fatigue is overwhelming and I seem to get tired more quickly than I used to and sleep more frequently and for longer periods. The Ataxia Nurse at Sheffield, Diane, is wonderful and thinks I should reduce my hours to increase the quality of life,in fact I think that she thinks I should stop working altogether. I have seen my GP who is willing to help me in anyway and I am having a meeting with Personnel, but I am so worried about the whole thing, it all seems so final, and I feel too young to be contemplating giving up work and relying on benefits. Has anyone been through the process? How do you go about it?Should I claim ESA or JSA? How do you feel if work is reduced? Does it improve the quality of your life or do things slow down even more? Can you cope financially? Please help as I am so stressed and worried about it all, Thanks. Nicky.

11 Replies

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  • I have not got Ataxia but my 16 year old son has and wants to leave school and get a job, this terrifies me and say to him to realistic about applying for a job. i can sympathize with you as I don't know what the future holds for my som

  • I am 23 and work 16 hours a week in an office. What pattern of shifts do you do? I do 2 full days of 8.30 to 5 and feel like thats easier for me that doing a few hours every day as I dont need to get up, ready and travel every day.

    I am nervous about not working because mentally I feel very alert its just physically getting to work and how tired I get. X

  • I gave up work a year ago, I am also 46, after money worries the next big one is what do I do? Currently I do one morning a week at my local CAB. For the benerfits advice make an appointment to see an advisor at you local CAB or have a look at the CAB web site advicedguide.uk.org

    Good luck

  • Ataxia is a progressive disease so you will feel worse as time continues.

    I was diagnosed 9 years ago and only have some energy in the mornings, never for more than an hour continuously. Then I am exhausted even though I still feel like I wish I could do more.

    But in the afternoons and evenings I am also mentally too tired to do anything. This could partly be due to my age and you are much younger but If it is going to be like that for you, you should look for a part-time morning job for as long as you still can.

    I got used to living a different life than I expected, maybe you will too.

  • Hi jonbon

    Sorry to hear about you predicament. Although I too have had ataxia for the past 7 years, t I am fortunate to be now retired. I do still do regular exercise. I have bought a second hand treadmill and exercise bike. I also claim DLA, which is now PIPs to those under 65. Although I am now much slower at doing things I still try. I am determined not to let ataxia defeat me.

    jomo50

  • I am 47 and had to give up work this year. I claim ESA. I was either at work or asleep, no life just existed. It takes bit of getting used to with less money but I have learnt to budget and it's so much better for my health. I pace myself and joined a disabled archery club near me and have made some lovely new friends! It's less scarey than I thought. Good luck!

  • Hi Pinkpiglet,

    Thanks for your upbeat, positive response. I am sure that once I do it I'll feel better, it's just the thought of it that's scary!

  • sounds like you have good support from Diane - try to stop worrying - and let the relevant people advise you as to which is the best course of action! Go for the BEST thing for you! Do NOT feel guilty!!!! And keep on chatting on HealthUnlocked - everyone is rooting for you!

  • Thank you, The support and good advice I get from everyone on this site is such a great help.

  • Hi, I'm 47 and since January I only work 2 hours per week. I teach English to groups of adult students. I live in France so the benefits system is not the same, but basically i live on handicapped benefit now.

    When deciding to reduce my work I made the decision what was more important. For me it is my family, my health and socialising with friends.

    Before I was just managing to work by doing nothing else but sleeping. I still sleep every afternoon and get very tired, but at least I can concentrate on my physio sessions and time with family and friends.

    Life is better now.

    Maybe you could keep just a few hours at work - but I don't know how that works with the benefit system in UK.

    I work because I enjoy it - obviously it gives me a little money too.

    I hope that by relating my situation it may help you with yours.

    I am the same age as you, but it is an acceptance of our illness and having the best quality of life possible.

    Take your time to reach your decision and good luck

  • Hi,

    Sorry to learn about your problems. I recently gained approval for medical retirement from my job of over 30 years having tried reducing my hours from full time to 4 then 3 days a week none of which helped manage my ataxia much in particular like you I really struggled with just being exhausted all the time. I appreciate that you will be worried about the future that is natural & understandable - I ran an ataxia support group in my area for a number of years & your worries are pretty common I'm afraid but as one of your replies mentioned I would recommend joining a support group if there is one near you as its a great relief to be able to talk to people who are in a similar position & do 'understand' rather than judge. Its also great to be able to learn from other peoples experiences & knowledge. I think that another useful contact would be to phone Ataxia UK as they can probably point you in the right direction for financial advice e.g. about benefits - I would imagine you should be applying for PIP (was DLA) if you haven't already done so + speak to your Council about reductions in Council Tax that you can apply for, thats at least a start. There is lots of information on the Direct Gov website its simply a case of both looking for & asking for help which isn't easy as 'pride' can often get in the way. On a final bright note life although different will get better when you can get more of a work/life balance + that in turn will make it easier to manage your ataxia. Good luck & never think you are alone, there are lots of us with ataxia happy to share knowledge, experiences & to just listen -- hope this helps.

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