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.

I suspect my dh is procrastinating as I don't think he really wants to think about the reality of how little I can do these days. Same here

I have found that DH procrastinates over every single stage of the illness. Which is exhausting for me. And triggers the guilt again I have to accept each bit much quicker than he has, as I have absolutely no choice. Although some of the media still reports that we do

Bugger. I've used the MEA scale which is kind of upside down to Dr Bell. What's your reasoning for this?

No, haven't finished the ESA. First application too. Most confusing.

Hooray for electric blankets and painkillers.

I was feeling a bit better yesterday though and have left my lunch in the downstairs kitchen so need to drag myself down there. I need to employ a very local person who can be on call and pop in when I find myself stranded away from my food

No reasoning - I just hadn't seen the mea one before :o

Yes the guilt. I hate it. Dh is adamant that he doesn't see me as burden. Or find it frustrating that he gets home from work and I'm still in bed. I'm bloody lucky to have him - he's one of those rare good ones.

I can't remember if you're on Facebook? If you are, have you seen the me and chronic illness benefits advice group? They have a buddy system and someone will have a look over your form for you.

Excellent. A guilt buddy

Am also very lucky to have another good one. Though some of DH's family would be absolutely delighted if he left. They are still emotionally poking him and putting him under pressure where they can. I am not the DIL they wanted & haven't produced any heirs quits topic before adrenaline spikes out of control

Glad you've got a good one too.
Not so much about the il's :(.

Have a restful weekend - I'm feeling worse than I did this morning but think that's because I've just eaten - I always feel rough after I've eaten in the day time

Hope you're feeling a bit better Missis.

Mmm, I've been thinking that too about meals and feeling worse. Do you have POTS type symptoms too? Someone on my other thread has talked about eating 4-5 small meals a day instead as the body can't cope with digesting and functioning at the same time.

When you've developed a menu plan of 5 'meals' a day which are low carb, high protein, non-gluten, non-dairy etc I'll copy it . It might just make a difference but I can't work out the logistics in my head yet.

Right, I've nearly finished slapping on the make up. Which club are we meeting at later for some bangin' tunes? I'm sure a night on the lash would sort this.

Hypothetical to toast Saturday night. If I play my cards right DH might wash my hair for me later

Feeling a bit better - dh finally finished his supporting statement and my pip application is now in the post - I feel a lot lighter having it finished and out of the house. I'm going to put it to the back of mind now until the dreaded drop of the brown envelope.

Had a wild one last night - back in bed by 9pm :o at least no risk of a hangover these days :o

I'll crack on with the meal planning then :o
In all seriousness, I can't get to grip with meals. I don't have an appetite at all so it can be quite late till I first eat - normally I have a bowl of defrosted berries, homemade granola and Greek yoghurt for protein. I could probably live on this tbh.

I tend to start having more energy/less pain by about 6pm so then I'm able to eat an evening meal at about 7pm and then no side effects from it. It's weird I could easily not eat all day and just have a regular evening meal.

No particular pots symptoms - I do have dizziness but think that's just the cfs. The odd racing heart but it's not regular and only for short periods of time.

Missis Great work to both you & DH.

Cannot wait to lose this PIP/ESA paperwork from my environment/mind too. . I've noticed I'm very tachycardic while I'm working on it .

This week will be stressful with tying up loose ends of PIP/ESA and getting out to the GP. Thank you for reminding me to ask for bloods again too. Although in the past, she has been reluctant to re-do anything as "we know you have CFS". Hate that term.

Did you have to persuade yours for more bloods? I had so many taken in the beginning and my last ones 18 months ago. Things can change in that time right?

forgot to mention food. So sorry this is a struggle for you. My disequilibrium was so severe in the beginning, I was very nauseous and according to DH, ate very slowly. Of course eating can stave off nausea, so I took this very seriously .

My appetite is fantastic now (not conducive with sedentary lifestyle ) but I've had a lot of unpleasant gastric issues, sorry, TMI. I find I have to eat my main meal at lunchtime and nothing at all after 6pm otherwise I can't digest it before sleep.

Mm. I too feel better after 6 pm, but I just assumed it was because DH was back and distracting/supporting me.

My GP is happy to do annual full blood count, thyroid, vit D, b12 etc as I'm only in there once a year now. I always get a print out of my results. Things can definitely change - my cholesterol had now rocketed and I can see over the list three years it's slowly increased.

My latest copy shows I'm low in folate so will add that to the vitamin list. My surgery didn't pick this up so it was lucky that I got a paper copy. I've got a phone consultation in a few weeks so will go through the results one by one then.

I remember feeling really nauseous at the beginning - and I lost my sense of taste too which didn't help with the whole reading experience :o

Eating not reading :o
It'd be the brain fog that doesn't help with reading :o

Just posted on my other thread. GP has agreed my HR is unusually high -when standing- and I'm off for an ECG and then a cardiologist appointment.

Although what a resting ECG will find I don't know, as it's standing up and moving about which is a problem

Still, step in the right direction. Just lots of waiting now. Thanks all

Will come back and chat more. Just been floored by lethal combo of ESA/PIP/GP appointments

Will leave this here til I return. Good article:

www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me

Hopefully the cardiologist will have some idea of what's going on. Baby steps, but you'll get there in the end.

I'm still struggling with the increase in medication and overdid it on Monday - the sun says shining and I thought I was invincible :o

Missis are you solar-powered? I am & it definitely doesn't help.

Another sunny day here today & I'm hanging on to my bed. I need 24 hour supervision really. I become desperate for sun on my face & fresh air & I can suddenly do amazing things to get there. Oh, it feels so great & then I feel a bit better & then I might move further into the garden etc I used to be so confident that this was the recovery I was waiting for.......... then........

CRASH!!!!! Back to wearing this iron suit, not being able to move from the bed & lying miserable in a dark hole . I would really love to know what happens to the brain physiology during a relapse. I am like a totally different person

:o I'm definitely solar powered :o

Have some seeds that need sowing in pots the garden, but today is not the day to do it sadly despite the sunshine. I got quite a lot of satisfaction from pottering in the garden last summer.

Morning. Still feeling really 'drugged' in the mornings and it's an effort to wake up properly. It's been 2 weeks since the Ami increase, thought it would be ok by now. Maybe it's the brain efforts needed for PIP/ESA/GP stuff.

Missis I lost my sense of taste too in the beginning. DH has reminded me that my appetite is not fantastic as I'd said, but much better than in the first two years. I can see how closely linked it is to physical activity though, if I do start moving about then I feel hunger again, which is a fantastic primal urge to feel again

I felt that being outdoors in the garden would heal me and the first 2 years I cleared my greenhouse (somehow!) and planted some seeds. I have a bench in there too (traded it for growing space) and I could lie flat in the warmth and feel very joyful watching the seeds grow Of course then the adrenaline wore off and I would really crash for ages and then the greenhouse would go to pot and I would berate myself for not keeping up with that either. I'm so sad to see it so neglected and bereft of new growth for the last two years But in a way, it's been easier for me to 'let it go' and realise that it's way more healthy to use the tiny bits of energy to get to food/toilet/a different chair.

Well, it's been nice chatting. Back to the forms

Hello all

I'm another one who spent the beautiful day yesterday in bed in the dark 😞

I had what I think was a hemi plegic migraine but am still feeling really weird so I'm off to the dr later....

I'm alternating pottering around and lying on the bed watching tv on the iPad

Thank goodness it's this week and not last week when dh was in China!!

Wood...when I was on ami even a slight increase made me feel zombiefied

Oh Badders you poor thing. . That sounds truly awful (had to look it up).

www.nhs.uk/ipgmedia/national/migraine%20action/assets/hemiplegicmigraine.pdf

How do you know what it was? Sounds pretty terrifying to have. I hope you have a sympathetic GP who will know what you are on about and support you. Yes, thank goodness your DH is here this week.

Good luck!

First had one after having ds1 and I was blue lighted to hospital with a suspected stroke!!

Haven't had many since but no they aren't pleasant

Still feel weird on my left side so odd to dr for her to look 👀 at me and say she doesn't know what to prescribe 🙄

Fed up today

Badders - that doesn't sound like fun - hope you start to feel back to normal soon

Being in the natural environment gives me such good rewards - a few months ago I really pushed myself on a gentle morning out which involved walking down a county footpath - only 100m - but I realised it was the first time I'd walked down a country path in over three years - it felt so nice but I had this weird nostalgia about it as I was walking along.

I'm still groggy too. I'm on nortryptiline (which is the same family as ami) and only increased by 10mg. The plan is to reduce down again in the summer time when I'm in less pain and then bump up again for the winter.

Badders and Missis

This too shall pass

Sorry, sorry, that looks like some epitaph! I'll withdraw the funeral flowers too

Yep, it's bad, but we're not beaten yet. The sunshine and sap rising will bring us extra strength!

Zonked today - overdid it yesterday buoyed by the false promise of sunshine giving me super powers :o

Its bloody freezing today so I'm back in bed with the electric blanket on that's my cold face not a sad face :o

Gentle weekends to everyone