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I was off with fatigue for 3 months and done a fayze return back to work which I am now doing 4 1/2 days :). But I am so so tired still want to sleep all the time and its a struggle to get through every day always look forward to the weekend so I can sleep, feel like I'm wishing my life away. Work has been good but dont think they fully understand. I dont post much but glad its there when you need a rant with someone else that knows. Need to work as morgage needs paid.

6 Replies

Hi Loraine

It be extreemly difficult to hold down a job and sucessfully manage fatigue and it sounds like your'e really struggling. I found it took time to educate my former employer, but I did get to them to agree to adjustments in the end. I worked flexible hours with one day a week from home, Of course this isn't feasible in all jobs. Sometimes it is possible to reduce hours and claim (disability and/or family) working tax credit, ESA, Housing Benefit and Council Tax Benefit. You can find more information about ill health and work at A lot of us find wer'e stuck between a rock and hard place when it comes to our jobs and I do hope you find a solution that suits you very soon.

Best wishes




It took my employers about a year to understand what lupus is all about, but as Val said try to see what you can claim in benefits.Good luck x


Hello loraine

When my problems were at there height I had big trouble staying awake through the working day. And as a panel beater this was not good at all. I did get into the habit of hiding about the office at lunchtimes for a nap. but the worst thing was one day when I was under an Audi and just closed my eyes for a second...... and woke half an hour later... I was clutching a blow torch. It wasn't lit but was of the variety which could be ignited with one hand. Shortly after this incident, I went self employed which allowed me to skive much more easily. A half hour nap was the norm in the colder months for a few year after.

Good luck to you.


Thanks for responding I already get DLA but own our own home therefor no other benefits, my hisband works also. I'll just go on doing what I can.

Thanks again all


Hi, Loraine!

I take a medication which I think could be of benefit to you. I began to take it because I was falling asleep while driving even on a 10 minute drive to the grocery store....with small children in the car.

The drug is called Provigil. It comes in 100 mg tablets. I take two tablets and feel awake and more energetic and motivated for about 8 to 10 hours. It has no side effects for me. It seems like a perfected form of caffeine: wakefulness with NO jitteriness, NO headache, NO light sensitivity, NO nervousness plus it lasts for about the length of a work day. (It is not chemically related to caffeine at all. That is just the only thing I can think of to compare it to.)

I hope your doctor will be willing to prescribe Provigil for you. Taking it has made me more productive and a much safer driver.

All the best to you!



Hi Loraine 14, I know exactly how you feel, sometimes at work I have fallen asleep and when I arrive home at 6 sometimes I am so tired I go straight to bed, sleep all night but still feel shattered in the morning. I have good employers however I am not sure how long their patience will last. I am currently undergoing tests to see if I have SLE and whilst I am dreading such a diagnosis it will be good to finally know whats wrong with me. After numerous visits to my GP I felt that I should just move my bed into the surgery. However keep positive and carry on the best you can.


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