Fatigue - forever?

Hi. I'm now five years post a major brain stem stroke. My functional recovery has been great. I couldn't see, sit up correctly, walk, talk clearly or do pretty much anything to start with.

Five years on, my vision is good enough to drive as long as I am well. I do not drive more than an hour away return journey and I do not drive in rush hour, rain or the dark for long. I can stay awake past midnight on the odd occasion. I will pay for that though. My sensation is still very numbed which causes more problems than I ever imagined it would, my balance is dodgy on a good day and shocking on a bad day. Concentration, which tbh was never a strong point is a problem too. Staying on task is a real task!

l am often still lethargic, tired, fatigued - whatever you want to call it, the energy to keep compensating runs out quickly and sometimes is not there when I first get up. All of the remaining impairments become far more of a problem when I am tired which leaves me at risk of physical injury and makes it extremely hard to raise a child.

I am trying to plan getting back into work as I am no longer eligible for income support, I am contemplating applying for ESA but I can't see that coming off so will be forced to apply for JSA. I am very worried that on top of running a home and a seven year old, it's going to leave me exhausted and unable to cope.

I guess the question is will it ever go away completely? At this point is it likely that returning to the level of activity possible before the accident is a pipe dream or something to work towards realistically. Having realistic expectations is critical at this point, from a personal planning perspective and also in dealing with the job centre.

Has anyone got all the way there so to speak?

Thanks for reading. X

7 Replies

  • apply for E,S,A its more flexable and you can earn uo to 70 pounds per week and it doesnot affect youre benifit,its called limited work.hope that helps?

  • I will try. This is not going to be straightforward though. My issuues don't fit their tick boxes. It is the right thing to do and could potentially support a phased return to work.

    Just far from convinced they will approve it!


  • miss dizzy look at what you CANT do on a bad day...that is what they are asking,. also reading between the lines , your daughter probably helps with some tasks ( not an easy thing to admit, but at the same time nothing to be ashamed of ).

    go for it


  • Hi Miss Dizzy

    Have you rung headway?

    Their experience with a lot of types of brain injury might be able to give you a better idea of what to expect long term.

    Love n hugs


  • I have spoken to them but I can't remember asking this no. Certainly don't remember the answer anyway! 😆

    Oh, the irony.

    Thanks x

  • Hi Miss Dizzy,

    I am only 8-9 months post Bi so can't really comment on how long fatigue will go on for but for me I still get it and its a git when I do but I now can recognise the signs prepare for it, sleep. Have you spoken to the CAB maybe they can help as said above Headway are sure to point you in the right direction too. Its a difficult one because it sounds like you really want to work but can't. Good luck and have a happy Thursday. XX Nick

  • miss dizzy apply for esa and pip. as for fatigue i had my stroke nearly four years and compared to some was relatively fortunate.

    i too ,suffer numbness down my left side ,plus a few other problems that members on here probably know off by heart now.

    as far as going away.....that was a question i asked when i left hospital and the reply was ........how long is a piece o f string

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