Chronic Fatigue

[howoldamI01]

I would really appreciate some views if your partner has chronic fatigue, as I am in a recent relationship with a man who has this.

We are both in our mid-50's, I am gratefully healthy and reasonably fit and very active, and it wasnt until we had spent quite a bit of time together that the extent of the chronic fatigue became apparent and I found out how much of a struggle daily life is for him..
He has had this for over 30 years after a bad head injury and as he has got older it has got worse.

He is a lovely kind man in every way and we get on really well but he has very little energy, needs to go to bed early every night, has to have regular rests, and can plan very little incase he doesnt have the ability to do the plan.

None of what I have written is criticising him, just how it is. I cook him very healthy meals when we are together, massage, listen and talk with him about it, ie support as much as I can.
And he is turn supports me in whatever I want to do, but its so sad that I often have to do everything alone because he can't join in.

Please can anyone who has a partner with this awful problem let me know how you deal with everything, what more I can do to help him.
Thanks

Do you mean chronic fatigue or chronic fatigue syndrome aka ME?

If the latter, it must be really hard having a relationship with someone who has that as it affects every aspect of your life. There are support groups for 'carers' and if it's that I can PM you some details. If the former, it's usually symptomatic of an underlying illness, so I suspect you mean CFS.

Are you his carer OP? If so, you're probably entitled to help and support. There's some information here on how to get an assessment:
www.citizensadvice.org.uk/family/looking-after-people/carers-help-and-support/

Does he have a treatment plan? There's some info on it here that you may find useful: www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

Thanks both, no I am not his carer, he can function up to a point every day.
Its chronic fatigue after a severe head injury 30 years ago which has got worse as hes got older.
he suffers with back pain also and general aches and pains.
He is used to it as hes had it for so long he cant remember being any different, but for me its a bit of a shock and Im not sure how to deal with it, being as kind and understanding as I can..

I have CFS. Honestly you sound like you're doing all you can. It can be very lonely and isolating having something where you 'look normal' so having someone that believes in you and supports you in researching or trying unconventional treatments, is as important as the practical side of things. My husband never gets annoyed when we've had to cancel plans or even cancel a holiday, and is still happy to plan things even if we have to cancel and that really helps a lot as it takes the pressure away to try and pretend you're ok when you're not, which makes things worse

I have fibromyalgia and chronic fatigue. It sucks. As you have discovered you look fit as a fiddle on the outside, but that is because you are carefully managing everything, going to bed early and then possibly sleeping in the day. Limiting the amount of time you spend out. Not going out for dinner, clubs, cinema dates in the evening if avoidable, and then if you do, limiting it to one day that week. Doing lots of little shops instead of one big one/doing one big one only,/ordering online. Resting or napping inbetween activities etc etc etc.

You sound like a lovely partner to be so understanding and asking for insight.

My advice is this man may be lovely but take time to consider if you are ok like this as while there may be moments of improvement it will be always be short lived.

I myself have been through ups and downs with my partner. It's very hard from both angles, as you feel obligated to push yourself to do more than you should and then guilty to be such a killjoy. I lost friends over it because I can't take things like long phone calls and I can't promise to meet them tomorrow at xx time. But I do understand how trying it is.

I think you're doing enough already to be honest. Continue being patient.

One thing I will say, being sporadic or impulsive is deadly! Planning is key. As is checking in. Maybe you should both get diaries and really plan out activities.

So for eg. 'Next Wednesday I would like to go to see xyz play at xyz theatre.'

Check in. Is he going through a particularly tiring patch?, If no, then ok it's a date. Now knowing you have something special planned the following week, he can take measures that might help like extra rest in the week leading upto. Maybe he does nothing the day before except rest completely. Come Wednesday he has enough in the tank to go theatre. Right up to the time you 'check in' with him. He might not be as bad as this and only require a few days heads up. After theatre he may be extra exhausted for a few days after. Then again he may be alright.

Of course there's vitamins etc (I get tired of hearing take this and that) and I personally believe in a good walk outdoors if possible as well, even a very slow one.

HTH a bit.

Thanks again for replies.
It is very hard to imagine how this must feel from the other side as it were..

A slight concern is that Im very 'live for the moment' and impulsive, but I always give him the choice of doing or not, without any emphasis one way or the other..

I think day at a time is all I can do for now, bear with him and see how it goes..
Thanks again

I have Ehlers Danlos syndrome, and a bunch of other metabolic and genetic conditions that give me chronic fatigue, along with awful pain. I think all you can do is support this lovely man through good and bad days. He doesn't want your sympathy, just a bit of understanding. It can be frustrating being healthy and watching someone you care about struggle. However, the long term outcome of your relationship would depend on that. He is lucky to have a good partner.

I have had M.E for 17 years. I have got worse over the years and I find it terribly frustrating as i was so sporty and active and now I am TATT.
I don't go out and socialise. If I do something one day, I have yo rest the next couple of days.

I was bullied and abused throughout my marriage by my narcissistic ex husband. I was called lazy on a daily basis..My own brother, father and sisters have all called me lazy.
I suffer from a form of alopecia, lichen planus and i have severe eczema/ dermatitis.

Dr Sarah Myhill says it is mitochondria not hypochondria. Her website is very informative and videos on YouTube, she has also written a book.

You sound like a very supportive partner.

I have never had support from anybody.

I have given up hope of ever having a living relationship with anyone, as i feel that nobody wants to deal with someone with M.E, and my experience is that most people don't believe it exists.

Loving relationship *