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.

Just wanted to check if you are getting any benefits you may be entitled to such as PIP, and maybe contributions based ESA depending how long you have been ill for. These could help pay for carers and help around the home.

Sorry crossed posts with others.

smurfy I got a copy of my ESA85 (or was it the ESA65?) and was amazed that I got placed in support group due to mobility. I sent it off as evidence for my pip application.

My cats are wonderful company for me now - although they are both moulting like crazy which is driving me mad as I can't Hoover up after them - dh is on the case this morning :o

Just reporting back on those earplugs - they are brilliant - I bought the mini ones and need a medium size rear plug - but when you put them in its as quiet as it is when you push your fingers in your ears - AND - they don't fall out over night :o result :o

I'm now googling the best black out eye masks :o

Happy Easter y'all

Useless. Just had to follow a link from someone else's thread to get back to my own!

Now I'm more mobile, I can't manage the standing up & walking about AND keeping up with my own thread. Threads I'm On page is empty

Coo, those earphones are dead posh Missis. I'm at the other end with my bits of ear rubber & old filched flight eye-masks here

Envious of everyone's cat stroking. The cats round here eat my garden birds which bring so much joy, so I'm holding out for a dog. Once I'm well enough to reliably let it out & stop it shitting in the house..... And preferably a low shedding version so I don't lie in mounds of dog hair wishing for someone to pass by with a hoover

Thanks smurphy & babyroobs for the tips. Everything helps. I haven't heard from ESA yet. I was extremely slow to apply though as I hadn't heard of contributions-based ESA & knew I wasn't eligible for the other ESA.

I'm a prime example of how using PIP to employ someone each week to help has contributed to me being a step closer towards recovery. Funny really when I remember the application & f2f procedure pushed me further away from recovery with the stress!

Can't believe I'm feeling so well (well for me) this week. (Even managed to watch a bit more Six Nations!) My Cardiologist will NOT be interested to see me at all, tsk tsk.

Yep, Happy Easter from me too
Even if the chocolate shouldn't be part of our normal ME/CFS diet.

Hope everyone is managing

We've got blue tits nesting in between the walls of our house and I've loved watching them popping in and out of the walls with its moss and sticks. We get them every year and it brings me much joy. Our cats must watch and chatter at them.

Get yourself a lurcher or greyhound when you're able to - very little exercise needed and love lying about - I'd love one myself but I'm allergic to dogs.

Oh I am so envious Missis

I adore watching nesting birds but since my MC's, we seem to be a barren garden . Even our busy birdbox has been empty two years now. Odd.

We do have a lot of cats passing through and I have seen one wander through our garden with a dead blue tit in it's mouth Have often found perfect dead birds about too. A random pair of young bullfinches . Unforgivable.

I have looked at greyhounds/lurchers actually. My dream dog though is one that can easily be trained to fetch the post, let itself out for a wee, open and shut doors, not bark, pick things up off the floor and keep the cats out of our garden. Frustratingly, I have to wait until I'm well enough to actually train said Wonder-Dog, as I couldn't finance a trainer/socialiser.

I know what you mean about being put off by your heart beating when you're trying to relax and sleep. I have permanent pulsatile tinnitus in one ear and being tachycardic as well, I faced hell of a challenge to relax at times

Just scanned my OP and can't believe how sick I was then, compared to now. Why? How is that I can stand up a bit more and get out of bed in the Spring? Is it the pain reduction which reduces the tachycardia and orthostatic intolerance? Mmm.............

I get pulsatile tinnitus too but only on and off - I quite like the whooshing sound :o

It's shocking when you look back in time - I think it's actually really useful to have a written record of how the illness can fluctuate especially as my short term memory loss means I can't remember sometimes actually how long I've really been in bed for.

All being well it should take me about 3 months to recover from the winter hideousness so I'm hoping by July I'll be back to my summer strength and will be able to ride that wave till November-ish - that seems to have been the pattern for last year. The path of this illness is so strange.

Duvet day planned for today - dc's are back at school and I can feel that I'm on the edge of a big crash after what's been a pretty social Easter weekend (well, within the boundaries of cfs/me :o).

We have some differences!!!

I come out of my winter coma and start standing up April time and get carried away with the Spring bounce! I feel so amazing (well, for me) and do half (?) of the things that have been backing up or I want to do. I can only keep this up for about 12 weeks before I start deteriorating around July time. By August, I'm laid out flat again and feel like I'll never get up again

I like your idea of living as a recuperating patient. I really hope it lets you have a longer period of respite well into the summer.

I'm trying to have a gentle spring too - I realised that I've lost so much physical strength this winter that it'd be mad to try and do anything other than build up slowly. I think I'm so much more aware of my bodies' limitations now (it only took 4 years :o).

Duvet day again for me today. Felt absolutely rotten yesterday so being sensible again in the hope I won't go downhill for too long.

Hope the sun is shining with you today

Hi Missis Hope today is better for you after resting yesterday?

Been a week of appointments here and I'm shattered. Will be back later or tomorrow for a natter and catch up

Normal service has resumed in the Boote house today - I didn't have to claw myself out of bed :o

Bleurgh to all the appointments - hope they haven't drained you too much

Hooray for not having to claw yourself out of bed!!!

Having struggled so much to get upright to wee, I will NEVER take getting out of bed -like a normal person- for granted again! Sounds like you're being very sensible with building up your stamina. I did myself some real painful muscular damage after a crash, when I got up and got active too soon. We need brakes

So I've survived Appointments Week. Still in bed now and have real muscle ache from walking around in hospitals. No crash yet, so better catch up here before I lose the ability to use brain and typing fingers.

Cardiology was great. Taken seriously (for a change). ECG BPM was nearly 140 lying down, so not my greatest achievement but enough to warrant a discussion. Three conditions suggested, one being POTS. All caused by a wonky Autonomic System, rather than actual heart problems (which I 99% knew anyway). Have been referred on to a tilt table test, the results of which will determine what medications they could try.

My subsequent research suggests that many ME/CFS patients have Dysautonomia of some sort and various treatments do not seem to have much affect. Other online postings say that medication totally cleared up their tachycardic issues followed by all their ME/CFS issues and they resumed a normal life.

I am feeling optimistic that we now have new avenues to explore. DH is more pragmatic and reminded me that every consultant we have seen on this journey has listed all my symptoms and matched it up to their specialism with offers of treatments and recovery. I hope he's not right

That's great that the cardiologist took you seriously and that you could get some treatment that could hopefully ease or eradicate the cfs/me symptoms. Will be keeping everything crossed for you.

Do you have to wait long for the tilt test?

Yes yes to the brakes. Dh got cross with me last night as I was trying to tidy up the kitchen and sort out the rubbish for bin day. He knows when I need to go to bed as I drop stuff constantly - I've noticed that I've definitely lost a lot of strength in my grip over the winter. Me, being stubborn as a mile, took a few times to be told to go to bed.

Have you got some Epsom salts that you can have in a bath to help relieve some of the aches?

I'm hoping to be able to start doing some gentle stretches next week with the aim of being able to start my yoga back up in a month or so.

No idea when the TT test will be. If I'm feeling really really well, I might postpone it.

Missis you know we are being bullied by our DH's? We should head over to AIBU .

Clumsiness is a sign I've overdone it or am too tired to be up and about doing stuff. The hardest bit is when you actually feel really good doing something and get told to stop and lie down! grrr

Ah, Epsom salts!!!! Had forgotten I used to do that. Thank you, will hook them out.

Ooh. Do you have enough energy to share your gentle stretches and yoga stuff? I'm thinking I might be able to start this too without hooning off and crashing for 6 months

Have a good weekend

Of course - I do yin yoga - veeeery slow which works well to stretch without too much heartbeat raising. Good for breathing and meditation too. Once I've got a bit more strength I'll move into hatha yoga.

Will hunt out some youtube links tomorrow.

Crashed. Yesterday. Still here lying flat today. Didn't have to wait long for the relapse

Quick, bring on the TT test!

That yin yoga looks really good too. See, even thinking about beginning exercising brings on a relapse..........

Where is my CBT & Community Home Fatigue Team appointments to help with this? Looks like I can only begin to feel well when I sit in bed and do nothing. What a life. I was feeling so well last week. It's cruel to bring you so close to what feels like feeling ok again and then take it all away. Humph.

too long. Tsk

If it helps you're not alone.

Unintentionally overdid it yesterday (dh ended up having to work so all the dc ferrying around that I'd mentally earmarked for him to do fell to me).

Then my friend took me on a gentle outing this morning (which with hindsight I should have cancelled after yesterday's shenanigans, but I just wanted to feel like me again for a little while doing what I used to do) so now in pain, ghostly pale and surgically attached to the electric blanket :o

Had I been in a wheelchair I wouldn't be suffering so much now. Note to self - stop being an awkward bugger and order a wheelchair next week so I can return to my glass prison in less pain.

Zero plans for next week other than resting up and quiet living within my glass cage.

Will get my arse round to posting the YouTube links tomorrow.

I actually meant glass prison, rather than glass cage - but you get the meaning.

It actually comes from this woman's account of the illness and it sums up the limitations well I think.

I particularly like her advice of:

"Do no more on a good day that you can manage on a bad. Reserve energy for your body to use for healing itself".

I need that tattooing on my forehead as a permanent reminder :o Although one day hopefully will recover.

But a good mantra nevertheless - I may stick it on the fridge instead :o

Well it helps a bit, but sometimes I like to hope you are outside in the sunshine with your family instead Sorry you're back on the pain/hot water blanket combo. My physio said in an ideal world, we would be hospitalised and very very gradually introduced to movement and exercise. Do you think if we could do that, we'd recover? We seem to boom and bust very easily?

I just wanted to feel like me again for a little while doing what I used to do

It's this isn't it? Just like me sitting in the sunshine with that glass of wine. Such a stupid stupid idea, but gave me such a sense of joyful normal-ness and happiness

Actually, had I wheelchaired up to and around the hospital I might not have crashed yesterday. Thing is, I could stand up then...and would feel like a fraud.

Zero plans for next week other than resting up and quiet living within my glass cage. ditto

DO NO MORE ON A GOOD DAY THAT YOU CAN MANAGE ON A BAD!!!

RESERVE ENERGY FOR YOUR BODY TO USE FOR HEALING ITSELF!!!

Yes I like this woman's advice too!

Especially since she was a GP with ME/CFS.

And she has recovered!!!! after six years

My physio said in an ideal world, we would be hospitalised and very very gradually introduced to movement and exercise. Do you think if we could do that, we'd recover?

Yes, I think we would. I know that if I have lots of quiet days with sensible resting periods etc then I feel much more stable - but then it gives us this false impression that we're ready to take on the world :o.

Being stuck in the home also gives a false impression of reality - yesterday I went out to an art gallery and struggled to stand for very long; at home I could stand for 10 mins on a better day - but I forget that - that's it! No journey to deal with, sensory overload, processing a new environment, being made dizzy but other people walking around, noise, decision making etc. Let alone looking at something new :o

I'm starting to see a wheelchair as more of a preventative tool rather than something I need only when I'm shattered. So, it's stops the feeling that you're a fraud. And perhaps, for me, makes it easier to accept.

And Yes - she recovered :o 🎈🎈🎉🎉

Hello all
Hope everyone is doing ok?
For some reason I can't read the thread vey well on my phone for some reason....
I'm back off to dr tomorrow due to shoulder fibro problems, gastric issues and hemi plegic migraines
I've been really trying not to go to dr but nothing I am doing (or not doing) is working so off I go
I think I need a referral to a migraine clinic for
Proper assessment
I'm sure my dr is right and it is hormonal but I need meds if it's going to happen every month!
Shoulder very painful- to the point I'm struggling to drive
I'm going to ask to go back into PPIs for my reflux
So....we shall see what happens!
Dh away this week and I'm wishing I hadn't agreed to do cover at work tomorrow now!!