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I think dh has cfs/ME how in Gods name do we all cope

(21 Posts)
itsallaboutME Fri 24-May-13 22:31:57

He has been more ill than not for a year now. He still gets up nd goes to work but thats all he has the strength for.

He refuses to seek help or official diagnosis, but realistically what good would a diagnosis do? All the symptoms fit right down to persistant sore throat (that is how all this started in the first place) to tiredness, muscle pain, dodgy sleep patterns, Nausea you name it he has it.

I don't know how to help him, I don't know how to cope anymore and I don't know where to start. Will it get worse, will it be the same forever?

itsallaboutME Fri 24-May-13 22:36:05

Oh I need to say he does try. He is a good man. He is not being abusive or having an affair. He is genuinely sick. His reluctance to go to the doctors and his depressive personality are the major sticking points. What I am trying to figure out is if it is ME is it worth the constant and wearing argument to get him to the docs if there is little that can help.

ColouringInQueen Fri 24-May-13 22:43:23

Hopefully someone will be along who knows a bit more about this, but wanted to offer a hand to hold as that sounds so tough. I think even if you can't get him to go to the Docs, you could go and to talk about Dh and also how you're feeling, cos its as hard for you I think. I can imagine there's cfs threads on here too... take care x

Grockle Fri 24-May-13 22:48:56

Without him seeking help, it's difficult. He should see a dr because part of diagnosing ME & similar illnesses is ruling out other potentially dangerous problems.

I can't tell you how to cope - some people find a balance, some people struggle. There is a long-running thread on here for people with fatiguing illnesses such as ME. You could have a read of that and see what it is like from our perspective.

Grockle Fri 24-May-13 22:49:55

Spoon thread but we're all sufferers not partners of sufferers.

joanofarchitrave Fri 24-May-13 22:51:55

Have you been to the doctor? Being a carer is extremely tough. Go to the doctor, tell them about your life and the impact of your dh's symptoms on it. You might get a carer's assessment, or perhaps just acknowledgement that your dh is ill and you are shouldering considerably more of the weight of life. It would also be useful to get info about local carer's services.

wordyBird Fri 24-May-13 22:57:58

It might get worse, better, or stay the same. BUT that's assuming it is CFS.

He needs to visit the doctor to rule out any other illnesses, which might be important - or might be minor and easily treatable.

I'm not well up on the diagnosis of CFS these days, but when I last looked it was a diagnosis of elimination - ie, it's not anything else and that's all that's left.

Treatment depends on symptoms presented, and what can be done about them.

Try not to wear yourself out urging him to go to the doctor. I can imagine how exhausting and upsetting that must be for you both. sad Colouring makes a great point about seeking advice for yourself, as a first step.

itsallaboutME Fri 24-May-13 23:06:14

I shut down from large parts of it which gets me through. I have had depression before and I am not heading back down that road yet. But by me shutting off I know I am not giving him the care and attention he needs from me which puts a massive strain on our relationship.

I don't think I qualify as a carer because he can still go to work and doesnt need any personal physical help. I KNOW there are people far far worse off than me and I don't want to take anything away from them emotionally or otherwise.

I am selfish in that while I worry so much about him I worry about what it all means for me too. We are blessed with a dd but I cant see us getting to somewhere where another would be on the agenda and I worry about feeling bitter about that or the affect being an only will have on dd. I KNOW I am skipping way ahead of myself. Its vey hard not to wallow sometimes.

It would be easier if he worked at improving things for himself though. If he would go to the GP and press his point. If he would consider antidepressants or cbt or both. His coping methods are so far away from mine. I need to do whatever is within my control and then at least I know I have done my best. He just tries to ignor and it os SOOO frustrating.

Noregrets78 Fri 24-May-13 23:10:43

So hard. i have experience of a friend with CFS, rather than first hand. I do know that since her diagnosis she attends a regular CFS clinic - not a cure, but they give her all sorts of coping strategies to help her deal with life more easily. Mostly about routinea and things like that but it has helped. I just wanted to flag - if he gets a diagnosis there may be things that can be done.

itsallaboutME Fri 24-May-13 23:12:11

I want to thank you all for listening. I have nc for this but I have been here a long long time. Just getting it all out is helping so much. I normally ofload on my Mum but she is in her mid 60s now and there is only so much running to mummy that is appropriate.

itsallaboutME Fri 24-May-13 23:13:49

Also thanks for not thinking I am the bitch I feel like sometimes.

wordyBird Sat 25-May-13 00:00:15

Oh no, please don't put yourself down. sad I imagine you are both tired and scared, but also have very different coping styles.... none of which helps.

Can I suggest the old analogy of putting your own oxygen mask on first. Take care of yourself. Vent on here, find a friend to talk to, visit GP and confide your concerns.... but also take some time off from thinking about it all, have some fun, in however small a way. Your DH should also try and find some enjoyment, just to lift his spirits a bit .

Secondly, this will be harder, but remember you cannot make him do anything (though you could exhaust yourself trying!). He might be quietly trying to get up strength to make the appointment... or he might have his head firmly in the sand.

Either way, maybe steel yourself to ignore the issue for a bit, if only to give yourself a break. I can totally understand why you feel worried, upset about the future, and frustrated by his inaction. But just now you need all the strength you can get. brew

itsallaboutME Sat 25-May-13 00:12:33

Thank you. I fear I have not let the bitxh in me completely out of the bag yet.

The symptoms all do fit with ME. I am guilty of feeling though that it is easier for our relationship for me to think he has such a horrible and incurable illness than it is for me to think he has depression that he refuses to attempt to address.

That is not to put down depression sufferers. I don't think you can just snap out of it. I think fighting depression is a bloody hard battle, one that takes strength, courage and determination. It is also a constant battle and for him to just assume that he will wake up better one morning without actually doing anything makes me really angry.

SlumberingDormouse Sat 25-May-13 00:17:19

A difficult situation as ultimately it's up to your DH; if he doesn't want to be treated, he won't be. However, my advice would be to fight, fight, fight. I was originally diagnosed with ME/CFS aged 16 but it was another 7 years before I was referred to a sleep clinic and got the correct diagnosis. Don't accept that nothing can be done and look for alternative explanations that can be treated. ME can be a devastating condition but all too often it's seen as a catch-all when there's actually something else going on.

itsallaboutME Sat 25-May-13 10:50:25

Thank you for the posts last night. I am going to try to talk to him again.

I understand why he doesn't want to go to our doctors. When the sore throats started they told him it was "all in his head"and caused by anxiety but they madr no attempt to help him deal with that. So he now thinks it is a waste of time.

itsallaboutME Sat 25-May-13 11:53:28

Does rest actually improve symptoms or should i be encouraging him to do things?

wordyBird Sat 25-May-13 12:54:44

Rest is unavoidable, as with flu. Ideally he has to pace himself so he's reasonably active when he can be, without tiring himself excessively... not easy to judge though.

It's easy to get into a spiral of can't do this, can't do that, too exhausted for anything...misery.

Ideally help him make a list of what he can do, with varying energy levels. So he mightn't have strength to sort the washing, but can put it in the machine. Too tired to move - pay a few bills. So rest when you have to, but don't give up completely. This is a kind of DIY CBT.

All this is with the caveat that it is CFS, not something else.

Doctor hasn't been much help so far, I see sad

CFSKate Sat 25-May-13 13:12:03

investinme.org/ also have a facebook page

PDF

voicesfromtheshadowsfilm.co.uk/

https://www.youtube.com/watch?v=41HwulAZ5WQ

itsallaboutME Sat 25-May-13 13:52:27

Thank you both. My plan is to still pressure him to go back to the docs. But this time be armed with a list of symptoms and maybe a symptom diary so we can try to rule out other things as soon as possible rather than being pushed from pillar to post.

Ilikethebreeze Sat 25-May-13 13:55:37

You need an official diagnosis.
You can go to the doctor about him yourself.

www.nhs.uk/chq/Pages/speaking-to-gp-about-someone-elses-health.aspx?CategoryID=68&SubCategoryID=158

PrincessTeacake Sat 25-May-13 14:32:27

Finding a good sympathetic doctor sooner rather than later is very important, he may need medication.

Other than that, the best tips I can offer are pacing yourself, nutrient rich diet, tools to keep up with your social life while bed-bound to avoid isolation and aquatherapy.

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