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.

MissisBootie So much of your post is extremely helpful

I completely get the depression that lifts as soon as your physical condition improves even by a hairs breadth as you cling to the hope that perhaps this time I might start to get better. Only for a relapse to happen a week later.

YES YES! I really struggle with this. It's a bleak, black hole, not even a tunnel. There is no chink of light ahead and no obvious way out . Then a tiny improvement and I am suddenly full of joy again. It's a cruel revolving door.

Winter is shit. Perhaps I could accept too that Jan-March will be in bed catching up on sleeping/resting or reading & viewing if I feel up to it. That way I won't be disappointed A sensible approach.

Haven't contacted Adult Social Services no. But am reading off the site I linked to earlier about getting assessed, so I guess that's the same thing?

Thank you for reminding me about the scales of ME/CFS. As I am in the severe category, I will include this in my application to PIP.

I have just applied for a Girl Friday! Too pricey but it was good practice. Will keep trying.

Tell me more about interpersonal therapy? I'm thinking a lobotomy may be helpful for me . Does anyone else struggle with an 'active' mind inside a body that won't play ball?

Mmm. I had a flu jab (through work) a few years before I got ill & I'm not sure there is a connection. Everyone else who had it, is still there! I can't recall the date of it. Do you think there are particular strains of the vaccine that have 'triggered' some of us?....or ... I don't know. I think I spend too much time alone wondering how this happened!

About 6 months before my final ME/CFS 'collapse' I did develop an awful rhinitis which I'd never had before. Was it the beginning of my body's immune system breaking down? It disappeared when I properly crashed out with 'The Flu', so it was almost like a pre-cursor.

Glad you found it useful.

here's some blurb about ipt. My therapist really understood the cfs and impact it had and how it dark inextricably linked to my sense of what I could /not do.

We worked on tools to help me avoid slipping so quickly into such a deep depression when I have the big relapses. Normally ipt is done over 16 weeks but mine took a year to complete due to the illness. Your local iapt provider may also offer it.

I also found it useful to examine why I found it so difficult to ask for help etc. And the vulnerability I feel by being dependent on someone else. As well as helping me to put my needs first, and that actually it's OK to take care of myself. It's very much about identifying practical/emotional /social support to get all of those needs met.

Completely agree with the active mind, but the body isn't willing. In my head I have plans about days out but then remember the reality. I've finally admitted that a wheelchair would be useful to have.

I'm sure that b12 makes a difference. I too am just about the minimum limit for injections I think my levels were 205 and the minimum was 180. My gp is happy for me to inject myself with b12 bought off the Internet but I've yet to research properly.

Re: pip - on Facebook there's a really good group called 'me and chronic illness benefits advice' with lots of guidance about the form. My gp also have a benefits advisor who's coming out to help me with my form. Might be worth seeing if yours offer the same.

Everything takes so much energy! Don't go away. I will be back later

I was going to mention B12 deficiency too, I'm in a support group for sufferers and there are very many of them who were initially misdiagnosed with cfs/me only to discover years down the line they actually have B12 deficiency.
A lot of the symptoms are very similar and there's a huge issue with under-diagnosing and under-treating B12 deficiency. And even when you are diagnosed, doctors seem reluctant to believe quite how awful and debilitating it can be.
I self-inject now, I didn't have the energy to fight the GPs any more and while I'm much better than a year ago, I still feel like I'm operating at about 50% of what I should be.

Sorry I don't have any experience of CFS/ME but I do of B12 deficiency and I just wanted to point out that you should make sure you are taking folate (B9) too as they are very closely linked and often if you have one you will have the other (symptoms are also very similar).

Honestly, DH being made redundant and then caring for me full time was the best 'decision' we ever made. We both struggled so much before that and it is so much better now.

I've he ME since a bad bout of flu in 95
Dx in 97
It's not been easy as I have relapsing remitting type so I can manage fairly well for quite long periods then...CRASH
I've also lost jobs, friends....
In fact Im leaving my current very part time job at the end of Feb 😞
I've been ill since oct and am just not getting better
I know the score by now
So I do what I need to do, but it sucks 😞😡
I've been having lots of issues since I turned 40 too and it's been really quite grim at times
I have no advice that you haven't heard before - and we are all so differently affected anyway
I'm hoping 2017 is the year I start to put myself first and really work on my health
Good luck op, it's crap now but it's not necessarily forever x

This BASTARDING FLU has a lot to answer for. All these lives affected

I am so sorry that you are all here and sharing bits of your story....Well, not sorry you're here IYKWIM! It makes me feel less alone, so thank you all for taking the time to post, I do appreciate it.

For everyone.... Though leave the gin & wine if you're alcohol intolerant!

Woodbury, People being kind is tough, it's much easier to deal with facts and matter of fact things.
We do pretty well really. Our parameters have changed, but the diagnosis and subsequent events have made me a better husband, and person. We're closer than we were when work, parenting and life in general took all our time.
We're not sad, no point, we've been there and will be there again, but not now.
If you ever want to vent, or moan , drop me a pm. I can't promise to be any use, but happy to chat . Good luck!

Missis That IPT is interesting. So pleased you finished the course even if it took so long. It sounds exactly like what I need. A coping toolbox. My Talking Space people offer IPT at Level 3 apparently and I was signed off from Level 2 CBT a year ago (after waiting for 1 year for 12 sessions). I might contact them again, but have also had an offer of EMDR and/or Healing Energies (AIT) and wondering whether that's worth a punt instead. It's low cost.....but will attending it be a great cost to my long term health?....

Okite Mm. B12. I also thought about going ahead with injections but my results were 353 ng/litre. Sounds high compared to Missis but I have been supplementing for 3 years. No wonder my GP wasn't interested. I guess it wouldn't be worth it? Quite happy to self-inject. I would probably saw my leg off with a blunt saw if I though it would cure me Have you all shared your blood results in your support group? Any with it over 350 like me?

And both of you, thanks for mentioning support groups . I had forgotten I was going to do that. Have just signed up to FaceAche so I can join those that can help. Already had links shared.

Titsy [snigger] Thank you. I have also been taking Folate for 3 years too as I'd heard it was connected to B12. Maybe I'm overdosing? I have done a fair bit of research and thought the only side effect was expensive urine

www.solgar.com/SolgarProducts/Folate-800-mcg-as-Metafolin-Tablets.htm

Op I have M.E too. It's a life-shattering illness. I get all that you're saying.

With regards a carer I felt very similar. I don't want strangers in my home. I am hugely independent and used to be v active. But find the right person and it gets easier. You will get more comfortable with it and if it helps it really can take a weight off. You might even start looking forward to theie visits if you strike up a friendship Getting taken care of properly is essential with this illness.

Are you aware of the research situation at the moment? I think in many ways this is the best time to have M.E. So much more is being done and there is huge hope. We might have a little way to go but we're on the right track.

If you have some energy google OMF and Ron Davis, #MEAction, the M.E Association and Invest in M.E. All 4 are doing some cracking work, as are Fluge and Mella in Norway. The more funds they all get, the better.

BeyondUnderthinking I am sorry to hear you were both struggling. Great that a redundancy helped. We have been trying to avoid that at all costs. DH has already lost so much I wouldn't want him to lose his career too. However if a lottery win came along.......... He would make a brilliant carer. He makes me laugh every day which is pretty amazing through the bleakness. Could he still do that full time here?

Probably not! Even I don't like spending that much time with myself!

Badders!!! Hello! We've 'spoken' before (diff MN username) and it's so nice of you to drop in Especially as things have been so tough for you for so long. I've been reading about your health . What a shame you have to give up this job too. As you say though, this year is about you and it's not necessarily forever.

Thanks for your wishes. Keep on keeping on!

I'm spinning in my bed

I love my laptop but going offline now to recover. I will be back!

Oh! Hello 😉
I'm in bed having a nap
Feel ghastly - it's half term here but both dc are ill too so dh has had a day off and we have done NOTHING 😥
It's rainy and grey so it's nice to be wrapped up!

I too am a recent namechanger - sorry to see you're having to give up your job badders.

It's so hard to prioritise ourselves - I think half of that is because of the nature of the illness. No one outside my house sees the reality of the illness and the longer we're ill the easier it is to normalise it.

I'm back in bed today after forcing myself to drop the dc's off at activities for the last few days. They're all at home now being suspiciously quiet - I find it harder to sleep /rest when there are other people in the house - I wonder if that's because of the adrenaline?

Dh is due home from work soon and I hate still being in bed. On 'better' days I always get up and dressed so I can spend a few hours pretending to be normal.

The sun has just come out so I've opened the window a little bit too get some fresh air in.

It does seem that there is a step change in research /treatment especially now the the peace trial has been discredited and the establishment of the Norwich centre of excellence. I keep meaning to email my mp about investing in research.

I had pneumonia and sepsis in november and i just cant seem to recover, I've read about post sepsis syndrome that is similar to CF apparently? has anyone heard of that?

Hey I've spent 5 out of last 6y housebound. I have employed lots of carers and used agencies. Happy chat if helps. I'm single so never had luxery of anyone looking after me. It can be daunting but finding right person and fit makes a huge difference. Though I've made plenty of mistakes along the way, and certainly much more picky than I was at the start!

Cherry - pneumonia and sepsis are life threatening conditions....it will take some months for you to feel better.
I'm sorry - what an awful time for you
Rest!
Fluids!
Bland nutritious food
Take care x

Can you not get social work involved and ask for an assessment of your needs but also a carers assessment for your partner. You might find you'll get some support or funds from social services (like direct payments to buy in care) They can also help you with buying int he care and employing a personal assistant if that's what you'd prefer. I know things are tight with SS funding but it's free to check and they're a wealth of information about what's available in terms of support

@cherrytreeblossom I think lots of people develop cfs/me after their body has been under severe stress.

November is not that long ago so really try and rest as much as you can. The less you fight it, the better. Don't feel that you should be better by now or that you should be doing x, y and Z. Pneumonia on is own is exhausting, let alone with sepsis added into the mix.

Pacing is your friend here - there's lots of blurb online about it - some people call it the spoon theory. But it's basically living within your energy means.

Whatever you do, don't try graded exercise therapy or anything that pushes you to do more than you're naturally able to do.

Well, that's 3 of us in bed. On the thread I mean. Who knows how many more, in bed, reading MN but insufficient energy to post? So pleased I posted today and hope it is able to help others. Lovely to come back and find you 'chatting' . (I need to get out more!) I've lurked for so long and MN kept me afloat, so it's nice to be on here for a change.

Badders don't worry about those NOTHING days. All we hear about is how over-organised children's social time is these days. See it as a bit of old-fashioned childhood.

Missis. No one outside my house sees the reality of the illness and the longer we're ill the easier it is to normalise it.

Yes this! I'm getting a hard time from some and I need to explain it properly to everyone. I am hoping that sending another group e-mail out to remind everyone I'm still here will help. I've had some fantastic online support from friends, especially in the beginning...but everyone is so busy...and well, it's sort of dropping away.... It's hard being a friend when I rarely reply. People seem to think I'm much better now anyway

What do I say and how do I set the tone? I would like people to know how properly shit it really is and why I haven't had visitors...but I don't want to send out a miserable pity party e-mail. It's been a long enough bloody winter for everyone as it is. They're waiting for good news!

I am also not able to rest/sleep properly when others are here. Especially the cleaner...but that was the noise I think? This adrenaline has a lot to answer for. It spikes just before visitors too and continues to stay high. I rarely have visitors now as I want to keep my energy for myself.

I also get up and dressed towards the end of the day sometimes to pretend I'm normal. Have attempted a quiet board game before....it was too much

I hope you're right about things changing. (Although I still have CBT with a therapist who was involved in the original PACE trial coming up )

Roll on these Centres of Excellence that are being discussed. One in Oxford too? I wanted to be part of Missing Millions recently, but was too ill to get up and send shoes

These research projects, lobbying and trials do not seem to be happening fast enough!