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.

Have pm-d you but do you think people know that it's not just about being tired?

If I remember correctly Action for Me has some fact sheets for friends /family members. Might be worth sending a link with it attached?

Maintaining social support has been a real challenge for me. I used to be the social organiser so always arranging stuff, since I got ill I've managed to do the odd meal out - I tried to arrange a few things with neighbours but had to cancel at the 11th hour as just too ill to struggle through. People just stop asking you when you keep cancelling. I understand that people have busy lives etc but actually the most support I've had is from old school friends rather than newer friends.

My plan for when I'm a bit more with it is to increase my social support as I really miss it. Thank God for the Internet though as it'd be so much more isolating without it.

My friends daughter has something akin to POTS

They see Professor Mathias down in London.
He's given her, her life back.
As a young girl aged about 20 she would just go down like she'd been shot.
She ended up bed bound. With an extension built on her mothers house.

Now she's so much better. She was able to drive. She's learnt a lot about allergies and what would trigger it off. This was more than just gluten free.

They moved to Florida about 3 years ago because she felt so much better in the sunshine.
I don't know if an of this helps I just hope so.

It's hard to get a balance between the benefits of having visitors compared to using your energy for yourself. I can only cope with one additional person in the house and no more than one a week. Do you have friends that would just come and sit with you for a bit? Say make them and you a fresh cuppa and sit with you for 10 mins? Even that can be exhausting though I know.

Dh bought some boardgames to play with the dc's now we could do active stuff together but I found it too hard to follow the rules so just watch them now :o

I'd leave the cbt if I were you - I can see the point of cbt if it's about helping you break patterns around asking for help etc, but not if it's going to be about challenging your false illness beliefs .

Definitely enquire about the ipt.

Oh the kids love it 😂
No Mum Harrassing them to do homework, piano practise or eat something other than haribo 😁
Hoping to see my nephews tomorrow at some point...
Feel sorry for dh - he's had a miserable day off 😖

I'm also hoping the warmer weather helps too...

Brilliant Missis That's given me some good tips for an e-mail. I'm sure I've sent one with attachments before but people were either too busy to read it or didn't understand it properly. The older generation in particular!

I was the social organiser too! Maybe that's why we're so peeved. It's a lonely life that you never planned. We'll set up an ME/CFS village where we can all wave at each other out the windows from our beds and there will be an endless supply of cheerful able-bodied helpers We could even have a social night of silent disco's in the village hall with NO flashing lights. Or people

An ME kibbutz!!
Great idea!

Hello OP - I don't have too much to offer but I do come across POTS in my professional life and know how hard it is to get a diagnosis and how debilitating it is as essentially there is not an awful lot that works treatment wise, however I know that many HCP's don't know a lot about it which can be frustrating. If you contact the charity Arrhythmia Alliance they can recommend U.K specialists that have an interest in POTS and if your GP is willing to refer you (and you are able to travel to see them) you may find it helpful to see someone who has more in depth knowledge of a condition that is not very familiar. Alternatively if your local hospital has. Syncope and Falls clinic that your GP can refer you to then they are actually the best people to diagnose POTS - GP's tend to refer to cardiology but cardiologists are not always the most clued up on POTS. sorry if you are already aware of this - and I'm also sorry you are having such a tough time.

Pangolin That's so kind of you to offer. Especially with the cards you've been dealt. Yes we also try and be positive about us being better people now and much stronger as a couple. It is tiring though eh? Maybe we're not as convincing just yet

I hope life is as kind as can be for you both in your future together.

YES! A silent disco :o
Love it. To just be without having to explain yourself :o

It could like that community housing project that a group of older women set up in London.

Wood I'm a carer and I'm lovely, honest

I do understand how it can feel like your privacy is being invaded. I have service users with ME and it's a horrible disease, I really feel for you

DogBlep (?) Thank you. You are right about it needing to be the right person. I'm sure I'll get the hang of it soon. Just seems odd to have a stranger in the home - in my safe space. It would be nice to see them as friends too. I have friends here now though, look, my first PM

I've probably made myself much worse by struggling on without support. PIL have been problematic (understatement of the year) so I have been trying to prove I am not a drain on their son. It didn't work anyway, so I may as well give up on that .

Exactly Missis but much more fun

Unborn I know you! Can you be my carer? You know what ME is too?!!!

.........'know' you from MN anyway

wood I just wanted to come on and say that I have worked for 16 yrs ( ridiculous as i was only going to do it for 2 yrs as a stop gap ) as a carer with lots of different people with lots of different issues and illnesses and I am a delight to be around

I worked with a great team of people who absolutely understood how tricky it is to have people walk into your house and do the things that you would long to do for yourself . Nobody wants a carer and we all know that .
But we also know that if we take it slowly and build up trust that we can make a real difference ......... (modest I know )

I am sorry you are having a crappy time of it . Do you have someone that could sit in with you to do the interviews for potential carers ? That sounds like a job I would put off as it sounds a bit daunting and hassly if I was in your shoes.

Ok, I've lost my way a bit now. LOVED today, but have to go offline for the night before my adrenaline spikes ridiculously & my vertigo forces out my contact lens .

I'm off to bed. Oh, I'm here already!

Night all.

Cross post with howlongtillbedtime ha ha. The answer is now!

Thank you! Will be back

Would I had it, or something very similar in my 20's i did get it as an official diagnosis but then after 2 years I recovered. So it could possibly of just been post viral fatigue or something like that.

I do get it though, it was not having the strength to raise my hairbrush that really got to me.

I'm in the NE if that's any good. You will always hear stories of bad carers but the majority really, really aren't. I work with some brilliant people. Service users get treated with the utmost respect, I'm palliative mostly myself but I do MH as well which ME is sometimes related to. I do those fields because I have personal experience with both its more a vocation then a job.

I don't discuss my work with anyone. I have had clients who don't want me there (I also have a granny that doesn't want me there either but that's a different story) but eventually we get to the point where we rub along together quite nicely.

Night night

Night Wood

I've had it for 15/16 years. Never bed bound but I had to give up work early on. I had to learn to stop fighting it and stop trying to do so much. When the DCs were small, I needed to get out because I had PND and DS was very active. I had made some new friends so kept up with them going here there and everywhere and suffering with payback after. Then I started doing less, stayed in more and when I was in, I just didn't do much, spent most of the day on the sofa, not getting up every 5 minutes. Unfortunately my so called friends were not supportive of this and I no longer see them. Slowly I've realised I'm not as bad as I used to be. The payback is less or not at all, it doesn't last very long and it takes a lot more activity for it to happen. I've even started an (gentle) exercise class. It was tough at first but I realised the symptoms after were normal to anyone who hadn't exercised in a long time, plus I probably pushed it a bit too much so stopped doing that after.

My GP did say it can burn itself out, which I've never heard of and I definitely still have it. But I am not as bad as I used to be which I never thought would happen. I did a recovery group and there was mention of paying back your energy debt so if you do something, stop and rest before you get to the point of being exhausted so you are putting something back into the pot.

I also think there is a fine line between doing too much and not doing enough. I do think it is important to do something, even if it is walking across the room for those who are worse with it.

And don't fall into a self pitying mindset. I am on a few facebook groups and I've either left them or hidden them from my newsfeed. It's a horrible, debilitating illness but I'm not surprised we get a bad rep after being on those groups. There is very much a woe is me/my left foot toe nails hurt every friday at 3pm, is this ME/CFS? Cue loads of responses "yes hun, I get this all the time, I thought it was just me". Possibly why some doctors are so (wrongly) insistant that it is psychological.

I know someone with it and she got some carers in from SS and they helped with bits of housework. Admitting you need help and accepting it is important with this illness! Not trying to plough through because you are a stubborn perfectionist (yes, been there, done that ).

I'm a great believer in spoon theory!!
I have only so many spoons and then that's it - I'm done
My last day at work is 28th but tbh the way it's going I will be surprised if I go back next week...I'm still ill (it's been weeks and weeks now) and both dc are ill
I'm making plans but also accepting that I will only plan one thing per day
It's hard
I always feel I'm letting someone down 😞

"Stubborn perfectionist"?
Moi!?
😂

No useful words, but sending a hand hold lass.

Wood - I'm sure you've tried these already, but in addition to the social services assessment (for carers, benefits and equipment to make life easier) have you looked into relaxation and/or mindfulness courses and read things on pacing activities. I work with lots of people with fibromyalgia and chronic pain/fatigue syndromes and some fine these things help too (especially with you mentioning adrenaline peaks with visitors). Hope you had a good sleep