Husband with CFS

My husband (now 44) was in a RTA two and a half years ago and got a mild brain injury. It was diagnosed at the time as Post Concussion Syndrome and we were told he would get better. After two years we have concluded he won’t. He has, amongst other things, issues with short term memory, loud noises, bright lights, maintaining concentration, depression and fatigue. He is not so severe that he has stopped functioning altogether. He is managing, with support from his colleagues to work a reduced contract of 28 hours a week. He has just been accepted for a programme of support from the local CFS clinic as he presents as typical of CFS triggered by the brain injury. I wasn’t working when the crash happened, although I was preparing to go back to work. I have two children going through GCSEs and A Levels.

My husband gets up four days a week gets a lift to work, works til 3.30 and then I pick him up (a 2 hour round trip for me) as he is not fit to drive after working. He comes home, goes to bed, gets up for tea, does gentle activity such as emptying the bins (never the washing up!) and at 8pm goes to bed. At the weekend he can do one activity per day and then he rests. His activities never involved the children. His experience of CFS is typical as everything fatigues him.

I do everything, including being both mum and dad to the kids. I can only guess what it is like to be him. He used to be very active and social, now work is his only social and intellectual activity.

Whilst I am doing everything at home and for the kids and him and also picking him up from work I can’t seem to find anytime for myself. I am struggling to envisage carrying on like this for the next 15 years. I am finding it increasingly difficult to accept that whilst everything I do supports him and his mental well being by enabling him to stay in work I am doing so at the expense of myself. He is at exhaustion point and can’t function beyond going to work, he can’t even do that without me helping him. He won’t consider taking a break from work to look after his health because he is worried that ’ missing the social and intellectual contact will be bad for his mental health’ and ‘he won’t know what to do with himself.’ I do understand this but he seems to think it’s ok for me to be missing all this and spending all my time and energies on keeping the family going. I am very lonely and no longer have him to go out in the evenings with. We don’t visit family together and rarely do anything with him and the kids. In a nutshell, I am fed up.

Hi i to have cfs i think your husband needs to somehow finish work. He must understand that you are under great pressure and you will eventualy become unwell.2hrs a day travel will wear anybody out. He needs to pace him self to cope with cfs.can your children help with the chores it would be a great help for you.good luck

I agree that pulling back on work, at least, would surely be better. Could he drop another day, eg, just work Tues/Wed/Thur to allow you both a ‘long weekend’?

Although he’s using work to socialise, which is good, there is no reason to think that ‘retirees’ can’t have a social life - or, indeed, an intellectual one!

The thing is to find things ‘locally’ for him to be satisfied with, rather than relying only on the workplace to supply him.

Conversely, is it possible for him to work from home for one day a week (depends what he does, I guess).

Sadly, it’s very easy for those who are ‘ill’ etc to forget that even ‘we who are not ill’ are NOT blessed with unlimited energy! They forget that WE get tired and frustrated TOO.

I do hope he’s appreciative of all that you are doing for him. After all, you are not responsible for his injuries or condition, and he must acknowledge that he is extremely fortunate to have you!

Thank you for your replies. I have finally told him he needs to work with me not me working for him and I think it is getting through. The lady as CFS clinic told him exactly what I’ve been telling him, and you also said, and now he is listening. He’s talking to work about a completely new work pattern with reduced hours. Wish he trusted me more rather than needing an ‘expert’ to tell him before he listens but at least it is progress! Now going to be driving him 4 hours a day but only for 2 days a week, it’s a start!

I hope your insurance company is dealing with an injuries claim?