Chronic illness & surviving the relapses. Am slowly drowning, how do I cope? All handholds welcome

[WoodYouBeHappy]

Posting here for traffic & name changed, following excellent MN advice before. Can't talk about this in real life.

Some years back I developed severe ME/CFS following an unexpected virus. Overnight, my life changed beyond all recognition. I lost my career, some friends, my outdoor hobbies, a family etc etc. Some family relationships have been put under severe strain & will never recover. The toughest part initially was being so sick and not having a formal diagnosis or medical support, so I kept dragging myself out of bed -on advice- and carrying on. As we do. Which made me worse

Now I have a diagnosis, I am disabled, virtually housebound and very weak. I have been wanting to write this post for about a year but did not have the strength. Or wanted to admit it I suspect.

I wear a HR monitor (am tachycardic with upright movement) have orthostatic intolerance, (poss POTS) vertigo, constant pain managed with medication, severe fatigue, multiple environmental sensitivities etc. Having visitors is extremely tiring (& triggers adrenaline spikes) so I am pretty isolated.

I've never been ill much & it has been a real shock. I was always the carer for everyone. I am was the strong, independent, reliable one who gets things done. I have been forced to rely on DH who has been my carer outside of work hours and friends/family to get me to appointments when I am upright. I HATE MY HORIZONTAL HOUSEBOUND LIFE and it has taken me a few years to accept the changes (possibly at the end of the grief cycle now?).

Each week I think I am beginning to feel a bit better and then I have severe relapses where I feel like I have the flu, struggle to move & cannot cope with stairs. I have to live upstairs or move downstairs (with a wee bottle- no downstairs loo) and focus my energy on getting to the kettle and microwave. I've even asked the hospital about being catheterised....
I feel so very very sick & begin to hope that I won't wake up the next day. This passes as soon as I begin to feel a bit better

The crux now is that DH can no longer manage the care work/cooking, as well as keep his job. We have to hire a carer. I DON'T WANT ONE I am a private person who wants to be better and do it myself! Even having a cleaner the last year has been odd.

We are both very positive people and good 'copers'. Each week there are small signs of a recovery and we postpone the 'getting a carer' plan in. I would feel such a fraud . But then I relapse again and realise that we have to find the finances to hire in help. I've advertised a bit locally online but no response. I have to press on with it though for the sake of my dear DH.

Does anyone have any advice about organising a carer/& or cook for a proud, stubborn independent girl? I am having trouble accepting a 'stranger' into our home and using some of our limited finances. I need to reframe this don't I?

And how do I accept my new life and survive the relapses where I just want to die?!!! I am not coping with this roller-coaster each week! (have tried counselling and CBT and meditation, alongside the bloody NHS recommended Graded Exercise Therapy etc).

NB: Did not put ME/CFS in title as I am aware that some still do not accept it as a valid illness. Sadly I am living (or existing?) proof that it is.

Welcome peakyblinder

and unmumsnetty hugs for you.

I don't think it's at all unreasonable for you to take the kids away without your dh. They still need to have fun and at the moment your dh's health isn't good enough to join you all.

It sounds as if he's in a bad way, both physically and emotionally. I don't think it's fair on you that he says 'he'll miss out' - it sounds a little bit like emotional blackmail.

If dh took the dc's away without me, of course is be sad about missing out on it, but id keep that to myself and just be pleased that they were all able to have a good time. Re:days out - I'd just arrange them and if he's able to come along then that's great, but if not then you can go without him. Does he use a wheelchair when he's out?

Is he on antidepressants for his depression? This illness can be so complex and I can see how easily it impacts on relationships unless you're both able to talk openly and honestly with one another.

....If only there was a way of re-training our brain and stopping the adrenaline........ .......

Thank you for answering so quickly.
I do organise as much as I can, but Its quite tiring doing it all alone. I do realise this makes me sound selfish and I am tying really hard not to be as I know this isnt his fault.
We have been together over 20 years and its like he has vanished under the illness. He isnt who he was and I miss him
He isnt on antidepressants. He takes Tramadol for pain, diazepan when the pain is so bad he cant sleep and antibiotics for this mystery, pain inducing infection.
Its so frustrating. The Urology doctor he saw last week said that sometimes people with M.E can develop these abdominal, kidney like pains as a symptom and it may be something he has to live with ?? But how can this be right ? He has been passing blood ! His inflammation markers were up ??
He doesnt use a wheel chair as he refuses. He just stays in. The longest he has been in the house in one stretch was 7 months bar pottering in the garden !!!

I think I will have a chat to hom about it tonight and expain that the kids deserve and need this and yes its horrd and yes we will miss him but I need a break too

Woodyoubehappy what does that mean please ?

Has he had any counselling about helping him accept the illness?

I know it's hard and I'm only coming to terms with using a wheelchair - but it will make such a difference to his quality of life - and you all as a family - and if you can get him to see it as a tool rather than an aid it might help him change his mindset.

I think wood was referring to my earlier post about adrenalin.

Gah sorry Peakyblinder that was a terrible cross post there

How awful for you, your children and your DH. Show him this thread (if he is able to read online) and let him know he's not alone in his suffering. The worst ones are of course the ones that aren't well enough to post (like me in the first 3 years of illness). Missis & I in the Spring often give a good impression of someone who is recovering but we are well aware that there are others much sicker and that a severe deterioration could be around the corner for us too.

ME/CFS is a miserable diagnosis and until research expands and biomarkers are found, our medical care is patchy and misunderstood.

Peakyblinder You can't pour from an empty jug!

If you crash and burn with your caring demands and steering the ship, who will look after you all? Of course you need a holiday and so do DC. I can totally understand how he will feel and that's ok for him to feel like that. Totally understandable. I have sent DH out alone so often when I can't make these events and although I am pleased at least one of us has gone, I am terribly upset that I am home alone and missing out again. I do try and hide it. Must ask DH how my acting skills are

Peaky...
I have no advice but I'm so sorry that you and your dh fund yourselves in this position.
I may be parroting pp but;
Is he on antidepressants? Often refused by cfs sufferers as they don't want to be seen to have a psychological problem rather than physiological iyswim?
I get nephritis sometimes and it's so painful, your poor dh.
It must be so hard for you having to do everything and you wouldn't be human if you didn't feel resentful at times
I know my dh gets fed up and I do apologise but he just shrugs and says "it's not your fault" and I know it isn't BUT it still impacts negatively on him and he is not a monster that feel that way
Does your dh get any disability benefits? Would he try a mobility scooter?
You deserve a holiday and so do your
Kids - I wouldn't deprive my kids of a holiday because I couldn't go....

So, my thoughts, before I crash.

Respite care. Is there anyone who can shift-change with you and look after DH while you and DC have days out/holidays. I wanted DH to be able to get away, but was too ill to be left alone for long. Getting a caring helper in (with my PIP money) has made this easier, although we were both resistant in the beginning. Get a cleaner too if poss.

Anti-D's. Please tell him that I fought these off for two years and nearly didn't make it. I was in a very very dark place. I didn't want to be labelled 'depressed' and all that that entails, but I got Sertraline prescribed "for chronic fatigue" which lifted the stigma and also helped with the disabling orthostatic intolerance. I WISH I had taken it before. The right AD really does help!!! I only take a low dose: 50 mg, but I am able to look back and realise yes I was depressed and no that didn't help!

Counselling/CBT/Acceptance: Missis is right. This helps to accept where you are now and as my physio said "It's not a permanent place but sometimes you just have to make changes, practise acceptance of where you are now etc" I can understand refusing a wheelchair (I am currently the same) and not going out. I am still debating this one though as I KNOW I feel better when I can get out. I'm too proud. I think this might change.

PM us if you need to and exchange e-mails, if you think it would help your DH to hear from us. And more unmumsnetty hugs for this shit situation you all find yourselves in

I will come back!

Reading and digesting carefully here. Supportive, telepathic messages for you all right now, until I can get back.

Very adrenalised and have to come off the internet for a couple of days to rest and sort out some RL stuff which has been backing up.

Keep it going!

Don't forget to take proper rest periods wood.

I'm feeling much more relaxed now. Slept better last night and fell asleep this morning for an hour. Resting all day today and hopefully with have recovered from the weekend by tomorrow.

I'm trying hard to follow the mantra :o

peaky hope your chat went well last night. I was thinking last night about how draining it must be for you both. I really do hope he considers counselling or something life that to help him come to terms with living with the illness. Is he a member of any me/cfs Facebook groups or other online support groups?

Hi, posting as I'd lost this thread, and about to go off-line for the long weekend so didn't want to lose it.

Hi peaky - sympathies - my DH also has CFS/ME and considerably more severe than I. I get very frustrated with him sometimes as he often seems to try to 'ignore' it and then crashes and seems surprised...and gets depressed about crashing and it just makes me want to shake him and ask "really, really? didn't you expect this??? like the 100 other times it's happened??" But then I also know the hope that "this time" it'll be fine, and thinking "sure, I can do that" and realising, too late, "yeah, no I can't". Sometimes I think we'd all be better off if we could see ourselves from the outside occasionally.

Anyway, to your original question - you and the DC should be able to go away. It sounds like your DH is using emotional blackmail, and he is probably in a very bad place, but that doesn't mean you have to stay there with him. You need to look after yourself as well -- sacrificing yourself won't make any of you better. Can your DH access any counselling? Has he had any since things got much worse? Do you have access to any carer organisations? Just things to think about.

Sorry, I am not being very coherent, but I wanted to get some ideas out and send my sympathies as someone who sits on both sides the situation.