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.

Morning All! Great sleep!...well, that'll be the amitriptylene

Just wanted to say a BIG thank you to every single one of you for posting yesterday. It was the busiest social day I've had for a couple of years but it was just what I needed!

Posting was very cathartic (& rambling, sorry) and your messages made me realise how much we have normalised the situation and become so very isolated. I think it sort of crept up on us without us realising. We sort of spend each day, head down, trying to get through the day. All your practical suggestions were very useful.

I have felt so alone and 'short-staffed' and although we are gradually making changes there is only so much energy and time each day. I would really like to hibernate and wake up to the Care Assessment, PIP, ESA NI contributions, Friends Support Team, Cleaner, Girl Friday, Trauma therapy, Community Fatigue Team etc already in place. It all feels insurmountable on a bad day. I had already begun some of these tasks but my memory and attention span is appalling. My 'completer-finisher' has walked off somewhere

We will keep chipping away at making the changes and with your ideas and the support of friends we will get there. I went to sleep last night feeling very warm & fuzzy [soppy]

I hope everyone here sees some sunshine today (I can see some from my bed!) and remembers that they did a good deed yesterday!

Now I'm going backwards to read the thread properly and note the bits I missed

Cherrytreeblossom (which I'm looking forward to seeing this Spring!)

How awful to have pneumonia AND sepsis. You must be completely knocked sideways after all that. You have had some excellent advice from PP & I can only echo DO NOT RUSH BACK TO NORMAL!!! This is what I tried to do and it has made me much much worse. There is no hurry is there? Proper rest now and reap the benefits later? I'm guessing you've seen this:

sepsistrust.org/wp-content/uploads/2015/08/Chronic-Fatigue-Following-Sepsis-2.pdf

I had not heard of this at all, no, but yes it's extremely similiar.

What I do know is that when you have had severe fatigue issues & other symptoms for over 6 months then they start to look at an official CFS diagnosis (no idea if this would apply to you). After a diagnosis, you can get referred to a Fatigue Team for support (Pacing good, avoid extreme GET). They may mention Post-Viral Fatigue which is what some patients get after illness. If it goes on for much longer & you are very sick, you may get referred to a Community Fatigue Team. At that point it might be ME/CFS.

Unfortunately the whole fatigue, virus, ME, CFS, Fibro, inflammation world is very vague. In the future it may all be diagnosed as one and the same, or found to be a whole set of different illnesses who just happen to share symptoms.

My advice though is to get in the system early. The NHS waiting times are depressingly long....and feel way longer when you are ill in bed or housebound .

Good luck with your recovery @cherrytreeblossom which I keep typing cheery tree

Talking of the vagueness and correlation between all these different diagnoses.

Has anyone been diagnosed with ME/CFS originally and now been diagnosed with MS?

I know two people, 1 within a few weeks and 1 after years of supposed 'ME'. Both of them are way healthier than I am and still working full time. (NOT that it's a competition! ). My MRI two years ago was 'clear of lesions'. At what point do you ask for a re-assessment....."you know, in case you got it wrong the first time"

Akire sorry to hear that. It sounds like you have been through some refinements of carer-hunting over the years. Now you are older (sorry ) and wiser, what TOP TIPS would you offer now? If you have enough energy to share?

Ha yes I can try! I'm similar point got told possible MS then someone mentioned ME but not to my face. So currently no DX but very ill and disabled but given up now. Justvtrying live life I have.

So lovely to hear such positiveness this morning - glad you are feeling a bit more able to cope with stuff.

I too have perfectionist tendencies - when my old employers occupational therapist came out to see me she said that all of the people she's seen with me/cfs are high functioning personality types and they've just crashed and burned.

It made me laugh about the starter-finisher. Sometimes it must be like living with a toddler for my dh - I'll start a task, then forget what I'm doing, start something else and then get too fatigued and there's just a trail of unfinished jobs around the house.

I once read about only doing 70% of what you think you can do - it seems a sensible approach but you just need the willpower to stop before going too far.

The sun is shining this morning and I've temporarily got up and showered (haven't managed that since Monday) opened all the windows and airing my bedroom.

The dc's have friends round today but they're all older so don't need any supervision.

I've had a couple of friends who had cfs as teens so a good 25 odd years ago now. Two fully recovered, one has since had a bit of a relapse after one of her parents died and it knocked her out for a couple of years and another family friend was in the severe category then after 8 years started to get better and had been fine for 20 years but is now starting to relapse.

I've never had an mri - the GP was happy to send me directly to the cfs service. I think I'm a classic post viral case.

to you Akire.

I don't know if a diagnosis helps or hinders you.

Are you able to access all the benefits you need without a diagnosis?

Hi Dowser I love your posts. I am a secret wood nymph and might look into this more in the future.

POTS. Thank you for posting. It seems Professor Mathias has retired now. He made some excellent progress with POTS but there were grumblings he did not listen to the ME side so much. I think that's the big problem here. I do not have SEVERE POTS and do not faint, crashing out from standing. Just a 30 bpm rise in HR when I stand & symptoms relieved when horizontal. My medical practitioners don't seem that interested. They seem to think it's just deconditioning. Which it's not! I can be in bed for days, then get up and it's absolutely fine. It happens again when I'm tired or relapse.

For anyone reading and thinking they may have it too. This site is good. I first learnt about it from MN

www.potsuk.org/

EllaPaella Great name. Great post. Interesting about the charity Arrhythmia Alliance. Have not come across them before and the only nearby POTS specialist I could find is a Paediatrician . Not heard of Syncope & Falls clinic either, but that makes total sense. A referral to cardiology was mentioned but no-one seems to want to make the referral and I sort of didn't feel it was the right place. It would be very demoralising to see yet another Consultant who wasn't sure why I was there/wasn't ill enough to be in their department

Hooray! and

I thought I was talking to myself

I was thinking yesterday about this ME village/kibbutz thing. It was lovely thinking about living again where things actually got done! (Where we weren't wandering around like toddlers leaving a trail of unfinished tasks a la Missis)

We would need a gardener wouldn't we? (my dream!) But we would not be permitted to have a fit handsome young gardener due to adrenaline spikes and tachycardia . I do not recognise my new self at all some days

Akire that sounds rather tough. To live a life so disabled and debilitating without any diagnosis. Do you have anyone you can call on to get you to appointments and start the ball rolling. Do you live in the UK? There is a little financial help available...unless the Tories make further cuts...

I have given up trying to get to appointments. I e-mail or telephone my GP and skype my ME/CFS clinic sessions.

Missis How awful to recover and then relapse. That is so unfair.

Off to rest now. Rubbish stamina

Hi wood! You've gotten tons of advice already, but the one thing I'd add is maybe is there something small you can do for yourself that gives you a sense of purpose? My friend with severe CFS/ME and Fibro has gotten a pet lizard and has been working on a vivarium or something (one of those things where the plants grow and make their own moisture and stuff, so you don't have to do too much). It's slow going, but the lizard fulfills her pet needs while she can't do something like walk a dog, and she gets a lot of satisfaction from seeing the plants grow. Fish are another possibility depending on your abilities, but my friend found that too much as they need to be fed every day - the lizard is only meant to be fed every few days and that's more her speed (she had to give her fish away :( ).

I've got something (maybe POTS, maybe CFS/ME, maybe both), but operate about 60% on the CFS scale. DH has CFS/ME and is around 30-40%. So I'm reasonably familiar with the struggle and big hugs from here.

I've been on DLA ten years just sent back my pip forms oh joy and in support groups of esa. It does make things more awkward not fitting into a box but not much I can do. It helps have SS assssmts wheelchair services, bladder nurse etc so have evidence if you know what I mean.
Spent years seeing neuros somunless something drastic happens not be going do it all
Again. As had all tests going several times over.

Happy to write crash course in finding a carer if anyone interested ?

I saw sepsis mentioned yesterday on the Phoenix Rising forum
forums.phoenixrising.me/index.php?threads/metabolic-profiling-indicates-impaired-pyruvate-dehydrogenase-function-in-myalgic-encephalopathy-cfs.48446/page-33#post-813282 but too complicated for me.

The PDH (pyruvate dehydrogenase) enzyme is impaired in ME/CFS.

Oh, and picking up on flu things from upthread: my more recent troubles started with a 3-month-long bout of flu during the flu jab shortages a decade or so ago (oh, my, terrifying that it's been that long...). I always get the jab if I can, because I'm highly susceptible (and hard hit) by flu. Although my POTS or whatever likely started a decade before that. On the other hand, DH (with proper CFS/ME) has terrible reactions to the jab. He got it one year to try to limit my exposure, and it was horrendous for him. He weathers the flu better than the jab.

I'm here

but ignoring all posts about Type A personalities and stubborn perfectionists, oh, not not me!

Ahem

Howlong Your post last night was very reassuring . I'm not sure I have any positive experiences to draw on yet, so everything helps. And you are lovely! Would I get off on the wrong foot if I borrowed some of your wisdom and left a sign hanging on the front door saying Nobody wants a carer for the interviews

Yep, I think I am putting off the interviews. I always have to plan everything out and write lists otherwise I'm blancmange. There may be one coming this weekend but I've found their bankruptcy details online

I was told by a dr many years ago that I needed a flu jab every year due to my severe reaction to the virus.
So I've had one every year for 20 years til last year when the nurse told me I no longer qualify...
So now I have to pay (which I do)
But ever since whenever I go to the dr or nurse they tell me off as it flags up on my records that I haven't had a flu jab!!! 🙄
Argh.....

Unborn thank you. Such a shame you are at the opposite ends of the country from me. It's really useful for you to discuss being a carer though as I really don't to be the granny that doesn't want you there! (Miles from retirement age but feeling ancient with ME). Your clients are lucky to have you

Do you need a fully time carer or just someoento do some household and general stuff in general to reduce yours and your husbands load?
My suggestion for someone who doesn't want someone in the house all the time would be
a) get a cleaner twice a week, Mondays and Friday morning for example. That way you know when they arrive, and can plan around that. They can do main cleaning and laundry
b) could be same person or different, but someone to cook in bulk. They could in just 4hrs one day bulk make say lasagne in 10 portions to freeze, and 10 portions soup, plus 10 portions something else. Then can just heat and eat when you like. If she does different each week You will end up with selection. Plus some days of basic scrambled egg or similar between you and Dh. Will reduce any general day to food washing also
C) then can hire others randomly throughout year on ad hoc basis ie a gardener once every few months to do a day major tidying, or cleaner to come a full day extra occasionally to help you sort anything to bin or donate, or whatever

Horticulturally, I could help out in the kibbutz. Tho young(nope), fit (very nope) and handsome ( not unless you've seriously overdone the meds) not in my remit. You'd be perfectly safe from adrenalin spikes, and your diet coke moment is likely to be warm and flat . Not bad at outdoor stuff tho

Slowly catching up, got as far as Harry Potter . Oh crikey 15-16 years is a LONG time . I had never heard of it burning itself out. Interesting. I was diagnosed with rising liver fire in the past (in Reiki & Acupuncture, you know just in case) so mine may never go out!

I don't know how you coped with small children back then. My noise sensitivity can be so bad I was thinking of using plastic cutlery! Hooray for feeling better AND doing an exercise class. In the beginning I was dragging myself along to Pilates each make because you know, got to keep active! . (Misdiagnosed with vestibular issues).

And yes I know what you mean about pitying mindsets and support groups. There are many people -including my DH in the beginning- who were highly suspicious about such miserable, negative people. Everyone seemed to be a conspiracy theorist too. If PACE could just be properly investigated and reported it may help our cause?

You've offered such good advice, as has everyone else. I wish I had got to this place sooner.

Proper chortling at LostPangolin

Ok, you can be our flat, -diet coke moment- gardener . But only if I can be your under-gardener stoppit as outside is where I really want to be! Gardens are so therapeutic. I have proven experience in horizontal assessment and pointing. As long as you let me attempt some gentle light gardening jobs without telling me I'm spiking adrenaline and need to stop now just as I was getting to the best bit

Ok, I need to move shortly. A shower is on the plan sometime and I have to shift positions to get in that sun. I know you won't mind if I use some of my spoons offline .

for MrsMozart & Murmuration & Barnes79 for popping by. Murmuration I've read your posts before and I do not know how you manage with both of you with ill.

Some valid points. Meditation DOES indeed help! But it's taken me a while to realise that the sitting up ones do make me feel quite ill and no it isn't because of past trauma resurfacing! Now I lie down and do guided meditation and try and get my HR right down. Very peaceful. I just wish it would stay there.

And yes. I have lost my purpose and I need to find it again. I was defined by my career and role amongst older generation of my family and it was a shock when I crashed out of life. I still dream about everyone and miss work terribly, but I'm grieving less about it now. A lizard? Mmm. I would prefer a dog Have looked into assistance dogs, but I'm not well or rich enough yet to put this plan in place. I did have stick insects but they kept escaping and I was too ill to catch them all and get them fresh food.