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.

Ah, you're much wiser than me Missis

So funny to see you here. Have just sent a long telepathic reply to you on another thread. . Did you get it?

Oh, that's interesting wood, that you feel good when exercising, too. And very interesting link about adrenal surges. Hmm. I don't know now. It's so frustrating to be doing this on my own, as I wish I had some HCP who actually knew stuff to evaluate what I'm doing. Because what if I'm really damaging myself long-term? I'm definitely worse now than I was 2 years ago, and I'm not sure why. But it's only recently I've started exercising on purpose - I did this because I'd taken up horse riding again (in preparation of DD getting lessons soon...and who is going to be able to take her for another activity a week is going to be a problem DH and I will need to sort out...), and I noticed that I totally didn't feel like doing anything in the evening before my lesson, but then I went and felt really good. And I also seemed to feel good for a few days afterwards as well, sort of like the opposite of PEM. (Although what if it's just an adrenal surge taking that long to wear off? Hmm.) And then I thought about when I first exhibited dyautonomia symptoms: I was very fit - my job involved a lot of physical activity including sustained periods of heavy lifting, and I was an athlete, doing 18 hours of gymnastics a week plus horse riding a few times a week and a good 30 minutes of 'conditioning' (sit ups, handstand push-ups, etc) each evening. I recognise that time as the start as I was going to the GP about being 'out of breath' during gymnastics, which they diagnosed as exercise-induced asthma, but I now know was actually tachycardia (the inhalers they kept giving me did nothing). But my fatigue problems didn't start until later, when I was in a sedentary job and didn't have the time or opportunity for the sports I used to do. I've wondered if maybe if I can get myself back to the 'fit' state, my body might be able to handle things better and I could be less tired. So I've been doing short exercise videos a few nights a week now. But what if I'm making myself worse? Argh!

And to answer your question about dysautonomia, I got diagnosed by lucking across an interested cardiologist. GP referred me for tachycardia, and while my heart was fine, I did have one anomolous reading - HR of 200bpm after three minutes on a treadmill. He passed me onto other specialists who dismissed me, and I went back to him in distress, as he'd given me his contact info and he'd scared me with dire warnings about my heart getting tired out. And happily he re-engaged, and after some more tests (I'm now recalling he did that 'poor man's tilt test' thing, of hr/bp while lying then standing) suggested we try medication to see if it helped. The medicine was bupropion, and it basically fixed the heart rate problem. Now my hr stays within physiologically normal limits instead of regularly shooting over 200 with mild exertion. But that was the end of it - I was moving the UK a few months later, and so he told me I had "some kind of dysautnomia" and no more investigations were done. It's only been since that bout of flu that I started having more fatigue problems. Bupropion is only available off-lisence in the UK for long-term use (it's available as Zyban, for a short-term course of smoking cessation only), but I was lucky to have a GP who was able to refer me to someone who could get it prescribed (although she was also the GP who said "some people are more tired than others" and had me massively doubting myself for 5 more years until I tried againg with a new GP).

Oh dear, I've managed to type quite a bunch there. I hope the information is discernible from all the waffle (don't have the ability to go back and edit at this point, I'm afraid).

Was that about the changes to the pip assessor guidance?

I've got someone coming round this week to help me fill in the form - I'm not sure I've got the reserves to go through the process but it would make such a difference to have access to a bit more support. Even just having a blue badge would make such a difference.

I read this article on The Mighty earlier - I thought it was useful to share about the bad days when it all gets a bit too much. The last paragraph talks about acknowledging/accepting those feelings as and when they happen and then letting them go so you can move on.

themighty.com/2017/02/bad-pain-day-struggles/

So lovely to see you two girls here

Have replied wittily & telepathically for now..

Very tachycardic this weekend & in bed. Feel really quite unwell. Come online to push for referral after looking at my HR monitor. It has these spikes between 150-230 and I thought it was just a dodgy Polar monitor. Now I'm not so sure.... Thanks murmuration for info. Might mention it to ME/CFS clinic.

Will be back

I love your characterisation of replying telepathically, wood. I so do that all the time. I'll also telepathically email friends right away, and get back to them months later outside of my head .

Hope you're doing OK this week wood?

I've nearly finished my pip application which is using up all available brain cells :o
I've found it quite harrowing to do - life looks pretty stark when you see it all written down in black and white. Had a little cry at dh about it.

Had an appt with my lovely doctor so she's updated for when the dwp request a report. I realised I hadn't seen her for over a year so getting all my bloods redone too.

Well done on Pip I sent my form
Off two weeks ago and not heard anything yet apart text to say it's arrived. So dreading a letter for medical. I've just sent them lots reports from loads other departments for services and equipments so hopeful
Not want to reassess me when 7 other organisations /services are already saying the same as what I'm saying. But I'm not holding my breath!

Fingers crossed you'll be OK for an automatic renewal akire.

I've really had to scrabble around for supporting evidence but hopefully I've written enough for each descriptor.

My GP has a welfare advisor who reviewed my form and she said that in our area they're looking at a three month wait for f2f's. I waited a year for my Esa assessment.

Oh that's helpful I'm London so no idea if that makes it better or worse wait! Made me laugh last time wanted me go medical about 9 miles away sent me travel info on using station end of my road. Shame they hadn't actually noticed it has 30 steps and no lift, when they had to do home visit they suddenly decided they had enough information already. Funny that.

Still here. Reading thread.

Exhausting week. Holding ESA responsible

Will be back. Good luck to everyone!

Hand on in there

I've been quite emotional this week - I'm sure it's that bloody pip form that set me off.

Shattered now so leaving it till after the weekend to look at with a pair of fresh eyes.

Hang not hand :o

I'll take a hand too Missis

Don't forget to get your DH to write an impact statement too. We forgot that last time

So PIP & ESA have finished us both off this week. Emotional, wrecked & fatigued. In bed for most of it, watching life go by

We'll bounce back! Meet you here next week Boote

Hope your weekend was pain-free and you feel a bit recharged (as much as one can :o).

I've upped my painkillers so woke up this morning feeling veeerrrry groggy, then had a sudden burst of energy and managed to get out to the hospital to have some blood tests done - I fear I may have peaked to soon so back in bed now.

I'm having a pip free day today - just going to get over the weekend for now and then finalise my form tomorrow so I can get it back within the deadline.

Hello, hello, I'm here!

Well, kind of. Have also upped my painkillers and woke this morning groggy Missis . What a pair.

Have spent most of the last week in bed, with a few highlights. A visitor or two, plus some time downstairs which feels fabulous. My PIP and ESA folder is taunting me right now but not sure I have any energy to tackle it today. I find it difficult to cope with my health changing by the hour. Earlier I thought I was feeling a bit better and even chatted to the cleaner. Now. Wiped out

So many things I want to say. Murmurations post about the dysautonomia was really interesting!

And if anyone is still reading. This thread has been fantastic for giving myself a good talking to.

I have hired a cleaner who also cooks and organises a bit. Her English isn't too bad and she works quietly and efficiently. I know we need someone for more than 5 hours and probably the care side too, but for now this is a massive step in progress for me. I no longer have to worry about whether we can feed ourselves each week.

The house is looking much more organised and clean and it has such a positive affect on my well-being. It also helps that I bumped up my AD's a bit and no longer feel that the hole is unbearably dark.

Thank you to everyone for contributing

Still reading, wood :)

I know what you mean about the organised house helping. I don't really notice until I come home on the day the cleaner has been, and it's such a relief to walk into such a clean environment. I think I have a low-level buzz of distress unless everything is spotless, and I'm afraid it's only spotless for a few hours... But it's nice to get, and when we didn't have a cleaner for a year, I was both destroying myself physically and never got the house into a state that relaxed me (I was concentrating on 'barely sanitary').

Morning Can't face my PIP/ESA yet, so dropping in here instead. It's so useful to know I'm not alone in this fight.

Akire Have you heard from PIP yet? I hope they don't want to reassess. Will they do it in a home visit?

My PIP application was extremely stressful. You're spot on Missis with harrowing. Sitting down to fill out a form about "How your disability affects you' was an intensely miserable moment of clarification. Feeling so ill I could not even remember my own basic details. It took me weeks to complete. Then I received a letter to say I had to be assessed in London at 10.30 am. (I am NOWHERE near London and can't even get downstairs by 10.30 am!). I used vital energy ringing them to change this....to an office 1 mile from my house! Why they couldn't do this first.

Then I had a random text from ATOS Healthcare saying I had to get in touch with them about appointments. I was so ill I did not know who the hell ATOS was and did not reply.

I had to carefully plan out my assessment week. Pre-emptive rest, no visitors or stress, wash hair/shower 3 days before, go through notes, get copies made of medical evidence to pass on, organise transport there and back, DH booked time off work, lay clothes out night before etc etc. They cancelled my assessment less than 24 hours beforehand

More phone calls/rearranging. Very ill, tried to get a home visit. They said my claim would probably be cancelled or I'd have to re-apply. Agreed to attend, checked that there was definitely somewhere to lie down while I was there (OI and tachycardic) and had to wait 30 mins sitting up in the waiting room as the only beds were the other side. I was in a bad way by the time I got in there and had to lie flat for the assessment.

Only received basic PIP, no mobility bit and the letter was full of inaccuracies. I keep postponing a re-application. Anyone reading. DON'T try and make a face to face consultation if it's going to make you extremely ill. Book a home assessment.

Phew. That was long. Really avoiding my ESA stuff too as not sure I have the energy. Missis interesting that your GP has a welfare advisor to help with forms. Such a good idea. How are you supposed to navigate these hoop-jumping systems when you can't even get out of bed?!!

I don't think this linked thread about PIP is current anymore and you've probably seen it already, but I think it's useful to signpost from here. Some excellent advice here.

www.mumsnet.com/Talk/am_i_being_unreasonable/2764894--to-give-people-assistance-with-claiming-PIP?pg=1

Oh thanks Missis for that themighty link up-thread about bad pain days. Might borrow some bits to send to people. I still have people who don't quite get it. The older generation seem to be the worst

Hope you're working hard on your PIP today. Can't wait for the relief when it's sent off. I actually feel like I can rest properly then.

No news from PIP 3 weeks today so we have the opening saga when carer brings mail upstairs and says "it's fine". Yes same problem with ESA you can be sick once and re arrange but if need again have start over.
Let us know if you need help any wording. For example on mobility I put a small fact then supporting eveidence so "I can't walk at all I am
Provided with a nhs electric wheelchair where my local NHS Critea is must be unable to mobilise indoors with a Manuel wheelchair to qualify see supporting evidence D" because then you already showing someone has reassess ed
If you can walk and also supports fact I don't have strength to self
Move either. You would think can't then argue that all assembly's by other teams are fake and wrong....

Right, Murmurations your HR. Don't apologise for pouring it all onto the page. It's very useful.

"It's so frustrating to be doing this on my own, as I wish I had some HCP who actually knew stuff to evaluate what I'm doing. Because what if I'm really damaging myself long-term? I'm definitely worse now than I was 2 years ago, and I'm not sure why".

If it makes you feel any better, I could have written this exact piece and I DO have a HCP who is 'supporting' me through this!! She is very nice and a good listener and has helped me make some life changes to limit stress. But she is a Senior Physiotherapist and her job is basically to get me moving. She runs a 'bucket clinic' (my words) for everyone with fatigue and over the last year I have not made any improvements (some of her clients only need 2 sessions ) My top marks in Chronic Fatigue are still the same and my Physical Functioning has actually deteriorated. I did not get very far with the Graded Exercise Therapy luckily, but I should have approached it like Missis and pretended to engage. I do know that every time I was able to increase my 'activity' I came down with severe flu symptoms afterwards and it took forever to claw myself back up again.

Like you I have found it extremely difficult to link any deterioration with activity, as the relapses weren't consistent. It would happen straight away, the next day, or the day after and it was impossible to prove. Like you say, sometimes after exercising you felt great. Me too! My brain was mush trying to work it out and spot patterns.

Off for a rest now. HR later

Thanks Akire Yes the further you are on the journey, the more evidence you have from others. I have two written independent assessments from medical advisers re: my small pensions and I'll bung those in there too.

Hope your PIP comes though soon. I burn energy listening to the postbox clanging each day

FYI, I got a text 17 days after my F2F assessment saying I qualified for PIP. But that was my first time, not a reassessment.