Disabilities & Working

ChristineLouise

I have chronic fatigue and work full time. I know that I am lucky because many cannot work full time but on the other hand my life outside of work suffers because I dont have the energy left over to cope.

Its like starting the day with half batteries and by the time you've gone to work and come home you need a recharge.

I have to save my energy or regularly take naps - Im not even 30 but some days despise this condition for not allowing me to do all the things I want to do (and should be able to do). Ive had to adapt greatly and change my lifestyle. I regularly take taxis because I feel in such a state that I cannot get myself from a to b safely. The other week I caught the bus to see a friend 15 miles away - trying to get home the 2 hour journey was too overwhelming and i was too tired to function clearly so called a taxi. On a good day I can pick up a camera and walk for miles - i get some aches but ignore them mostly and if they are bad take ibruprofen, if they are really bad then I have codine on prescription. When I am too tired to function, I cannot speak clearly or coherently - its awful, Im not stupid yet struggle to find the words I need to use to communicate, too tired and fuzzy headed to function, Ive stepped out in front of traffic, Im hypersensitive to noise and crowds when Im feeling low and as a woman when Im trying to get home feeling weak, fuzzy headed and not functioning clearly the thought of navigating town, crowds and people then buses and walking when I feel vunerable and not very well is too much and I end up taking a taxi. Last weekend I went to a friends birthday - because I wasnt 100% I didnt drink at all. At some point I felt I couldn't stand anymore, started swaying and sat down, the day after I was hungover most of the day (without alcohol). If I see friends I tend to end up hungover the next day as a result. Yet I am holding down a job and only do so because my employer has politely ignored the many times I fell asleep at my desk and the times Ive been crap (I am more thankful than my boss knows that he hasnt fired me for being crap at times) I have lost jobs due to making mistakes, and one day Im afraid the day may come when I have to reduce my working hours. Would someone like me who has worked full time be entitled to anything at all? Someone has suggested PIP but because I can move, walk, communicate absolutely fine when my energy levels are peaked and function quite well, Im not sure if someone like me qualifies for anything.

Any advice appreciated. Thank you.

Mojisola

ChristineLouise wrote: »

I have to save my energy or regularly take naps - Im not even 30 but some days despise this condition for not allowing me to do all the things I want to do (and should be able to do). Ive had to adapt greatly and change my lifestyle.

I regularly take taxis because I feel in such a state that I cannot get myself from a to b safely. The other week I caught the bus to see a friend 15 miles away - trying to get home the 2 hour journey was too overwhelming and i was too tired to function clearly so called a taxi.

On a good day I can pick up a camera and walk for miles - i get some aches but ignore them mostly and if they are bad take ibruprofen, if they are really bad then I have codine on prescription.

When I am too tired to function, I cannot speak clearly or coherently - its awful, Im not stupid yet struggle to find the words I need to use to communicate, too tired and fuzzy headed to function, Ive stepped out in front of traffic, Im hypersensitive to noise and crowds when Im feeling low and as a woman when Im trying to get home feeling weak, fuzzy headed and not functioning clearly the thought of navigating town, crowds and people then buses and walking when I feel vunerable and not very well is too much and I end up taking a taxi.

Last weekend I went to a friends birthday - because I wasnt 100% I didnt drink at all. At some point I felt I couldn't stand anymore, started swaying and sat down, the day after I was hungover most of the day (without alcohol). If I see friends I tend to end up hungover the next day as a result.

Would someone like me who has worked full time be entitled to anything at all? Someone has suggested PIP but because I can move, walk, communicate absolutely fine when my energy levels are peaked and function quite well, Im not sure if someone like me qualifies for anything.

As other person with ME, it looks to me as if you haven't learned to pace yourself.

All the things you mention above so that you should be entitled to some benefits. Just because you can sometimes do things doesn't mean that you aren't.

Are you a member of the ME Association? They have a helpline and advice sheets about claiming benefits - and about managing the illness.

Darksparkle

PIP isn't means tested so doesn't matter if you work full time.

It's about how your condition affects your daily living and mobility.

https://www.gov.uk/pip/eligibility

As for any other benefits it would depend on your specific circumstances eg single/partner, children, income etc

ChristineLouise

Hi, thanks, I do try to pace myself mostly but most of my energy goes into work, its the getting home part that (can) suffer after a particularly demanding day, and I still have to run errands at weekends (and rest a while afterwards or nap), and if I see friends on a sat, I generally tend to spend sunday as recovering, sunday is my rest day for the working week ahead. I cannot cut down my hours at work and Im afraid to change jobs as no other employer will let me get away with being late, falling asleep and generally being a crap employee. My boss turns a blind eye to all my symptoms and I know it (and am grateful). I am also a photographer but dont take photos half as much as I would like to because I can only do one thing each weekend, be it seeing a friend, shopping or taking photos, or just going somewhere with the other half.
I am not on any forums or support groups but I wil look up the ME Association thankyou. I had the diagnosis after Mum came across hypermobilty and the beighton test and we discovered most of the family down my mothers line are hypermobile (Ive always known I was double jointed but thats as much as anyone thought of it). Ive had various blood tests that show no abnormalities and eventually requested a diagnosis of CFS. Having lost jobs previously due to being too tired something needed to go on records. I want to continue working, in an ideal world I'd change over to part time (4 days a week) allowing me a much better home / work balance and better quality of life whilst maintaining independence and supporting myself.

CakeCrusader

I have MS, and I get DLA (they've not changed it to PIP yet). I get really severe fatigue and have nerve damage etc. You can apply for PIP, but I really do recommend that you go to the CAB for help with the form as it's really tricky to fill in and you need to get it right. Once they've awarded PIP, you can get a slightly higher tax credit rate (if you're already receiving it). I'm trying to work less as it's leaving me exhausted, but because I have a child I can receive more tax credits as I'm not receiving anywhere near the maximum. They do do a 'disadvantage test' for the extra allowance, they ask whether you can work a normal 8 hour day, so just be honest. I work from home, my shifts are usually 3 hours at a time, max 6, and I get an hour off in between (at least) so I sleep and rest then.

Please try to rest, I avoid errands (so I shop online) so I don't exhaust myself. It's pointless working 38 hours a week if you need time off to recover from it. Listen to your body, if it's saying it's had enough of whatever it is that you're doing, then it's time to stop and rest.

Alice_Holt

PIP (Personal Independence Payment).

Some more info here:
http://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-self-test
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/before-claiming/check-you-are-eligible/

I would suggest getting some help from your local CAB to complete the PIP form. Or use the guides above to describe how chronic fatigue affects you.

ChristineLouise

Thanks guys, looks like a trip to CAB on a day off to discuss. I work full time (40 hours a week) but most of my batteries get used by my job (or any job) and thats my quandry. Im not incapable of working but have had to adapt my whole lifestyle and it feels like Im living only to work sometimes, sadly there is no magic cure and Im grateful Im not affected to the intent I have to stop working, Id love to be a social bee at weekends out the house, seeing people, snapping photos but I cannot.

CakeCrusader

Just do what you can, Christine. If it helps to work less, then work less. Don't get sucked into the trap where all you do is work, sleep, and do your errands.