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.

yoga nidra

There's one on there specifically for people with me/cfs but lots of other ones too.

Living life on the edge here!..........of a crash

Am I close enough to the edge to take this?

prescribe4me.co.uk/lowdosenaltrexone/Default.aspx

It's tempting isn't it? It shows how desperate we can be - that we'd consider taking something prescribed off the Internet. I was googling cannabis oil the other day (although its now impossible to get hold of due to reclassification).

I spoke to one of the gp's about this a few years ago and they looked at me blankly.

I remember seeing another website where they did Skype consultations. I think they were based on Scotland too.

I think there are a few threads on the phoenix rising website about ldn with mixed results - there's always that voice at the back of your head thinking 'this could cure me'.

I wonder if you'd need to come off other pain relief?

Hope today is gentle for you

Hello

Again, I could have written your post. Was also researching cannabis oil. I was feeling desperate and alone. It was Saturday night and everyone was out and I was missing yet another social gathering. I want to be cured . The longer I am ill for, the more 'friends' drop away. I think no-one knows what to say anymore. It's so dull to have a sick friend who rarely replies to your messages and never turns up to occasions. My key people around me are all male and I do wonder if they just don't talk about how ill I really am and pass on very little information. . I'll employ a female PA soon and get back on track

Being surrounded by males probably influences my appearance too. I totally agree that keeping up with a little bit of self-care and beauty does make you feel better. I had a fab mobile hairdresser, but with money very tight and not going out anyway, it seemed like a ridiculous luxury. I also did not have the energy to wash hair AND have a visitor AND sit upright for long enough. I've had a stab at cutting it myself, that was pretty amusing.

I recall in the past few years it has been nice to put on make up too. However, did you find that people thought you looked much better and therefore had higher expectations of you? When I had dragged myself into the garden last year for some lying down and became browner, people remarked how much better I looked, so much healthier! I found that hard because beneath the tan, I was still feeling very grey and sick and lifeless and it seemed defeatist to argue with them and tell them so

I am lucky in that I have a few girlfriends who have offered to brush my hair and do a facial. It hasn't happened yet, but I should take them up. DH has gone out today and doesn't seem to have noticed that my hair is matted and tangly, sort of half up and half down and needs washing and detangling . I think girls notice these things and just sort of jump in and do it.

Mm, never heard of yoga nidra. Thank you so much, will definitely look that up.

. So we were talking about serious drugs, cures and coming off pain relief....and now I am wittering on about make up and my hair. Weird being chronically ill isn't it?!

I think we forget about taking care of ourselves. When we've been ill for so long, it's almost as if we don't 'deserve' those little luxuries. We're so busy trying to take care of our physical health, the other luxuries seem superfluous.

I think that our self esteem also takes a bashing. It's hard not to take it personally when you stop getting asked along to social events and even the odd text message dries up from people you thought were friends. It's almost as if because other people don't care about us, then why should we care about ourselves. Bit deep for a Monday morning but for me I definitely have these thoughts.

Promise me that you'll call your mobile hairdresser this week - they could do a dry cut for you which would take less energy.

And yes, ask a girlfriend if they could come round and give you a facial. They'd probably love to do that for you.

One of the things my therapist asked me, was "how do you think it felt to be asked for help?" and having actually thought about it, it probably felt really nice to be asked to help you with something, especially as they can't make you better.

The make up can be a double edged sword - some people say, thinking it's a compliment, 'we'll you look really well'. I just smile and not as it's too much to explain that I feel fucking awful. I also think that sometimes people just don't know what to say and don't mean any harm by it. Agree with you that the summer tan went a long way to hide the exhaustion and helped me to blend in with the normals :o

petition.parliament.uk/petitions/190618

I wonder how many ME petitions I have signed. I never hear much about it, so I guess we're still a low profile topic .

Too sick to go out and cause much trouble I suppose

Some excellent advice in your pp Missis. The sort of advice I would dish out...and forget to apply to myself .

You are right though, I'll get my friend to pass by with the hairdressing scissors this week. A water spray and a quick trim is all I need. No point waiting for enough energy for washing/ cutting/blowdrying/talking...

Thank you for passing on your therapist's question. That's a good point. Friends would want to help. The more I rest horizontally, the better my brain functions and the more likely I can communicate to others what would be helpful. As soon as I get up and try and get in the garden though, it all unravels . What a trade off.

Believe me - I rarely follow my own advice :o

How's your cleaner /cook working out? Is it helping?

That's so funny. I had completely forgotten that's why I started this thread

Yes it has been so helpful and I wish I had done it a couple of years back! Doh. I think being continuously told that you're going to recover and your test results are fine, had us holding out for a recovery.

It's odd. Even though I couldn't stand and was in pain & tachycardic etc, I still didn't think I was 'ill' and certainly not sick enough to need help . I also had people with chronic illness advise me to 'fight it', not lie down and accept it and keep striving for recovery. I think that influenced it too. So, for now I have turned about, 'accepted' it and I am lying down and resting and letting someone else do the cooking and cleaning. . hoping that I do not deteriorate any further

I have not really seen any improvement in my illness yet, but I am less stressed about the important things not getting done, which has to be good for my health.

Do you see any improvement, now that your PIP has gone in and we're out of the winter? Do you have trouble regulating your adrenaline once you get upright and get carried away with what you can do?

Anyone still around on here?

Started this thread, if you have any experience with the Lightning Process?

www.mumsnet.com/Talk/_chat/2896076-THE-LIGHTNING-PROCESS-Calling-all-ME-CFS-people-to-help?

Zonked right now, but there was a thread about a year ago with someone who did it and found relief. It'd be interesting to see how they are now.

Also martine mccutcheon did it and said it cured her, however when she's mentioned it on loose women (I have highbrow viewing these days) she still refers to her me.

Oh Miss sorry you are zonked. Was it that rock climbing, surfing and sprinting you did when your DH had that last week off?

It's a bitch, when doing a bit of weeding and normal life around the home confines you to bed. Did you try and go out? I'm hoping to next week but don't want to suffer for it. I really hope your crash doesn't last long

I THINK I am coming up again today...but it might be too early to tell. I'm scared to do anything one minute and then getting up do a little tidying...then scolding myself for standing too long & lying back down again. Going round in circles really.

Yes, I think I remember a thread on the LP last year. Was the poster really, really sick and then miraculously got better after LP and received some scepticism on here. Didn't the thread get pulled?

How you feeling today Miss? Any better?

I feel fantastic today and got up and dressed! We're definitely better when it's warmer, but WHY the suddenr recovery today? HOW am I going to handle a cardiology appointment when I feel so well - without tachycardia? fgs

Still thinking about The Lightning Process.... Are you tempted? We could have a day out together and then go for a drink in the evening (seeing as so many recover on the first day!)

Much brighter today but just pootling about at home and being sensible with rest breaks.

So glad it's working out with your cleaner.

I'm probably managing about 2 days a week out of bed which is a definite improvement compared to every day over the winter. I'm mindful that I've lost a lot of strength over the winter so think it'll probably take me a good three months to get back to where I was last summer.

Been sitting in the garden today and now indoors in a sunny spot. Life is so much easier when you're not in so much pain.

I'm phoning the red cross next week to try and get a wheelchair so I can get to the beach at the weekends and get pushed about with my crocheted blanket on my knees :o

Hmmm the Lightning process. If a generous benefactor stepped in and paid for me I'd certainly give it a go, but I just can't justify spending the funds in case it doesn't.

When's your tachycardia appt?

So pleased you're having a good day

Downward slide again today. Not bad. Just tired and not interested in going out in this beautiful weather. Have been using the time to get ahead on my Lightning Process thread. I don't think I'll risk LP.

I think I'm about the same as you, with days out of bed. DH has some time off so will be careful not to overdo it. Good idea about the wheelchair. I've seen some good ones advertised on Gumtree for £50 or less. I've been tempted, but I'll be better tomorrow won't I?

Tachycardia gone yesterday, back today and have had lots of low levels on oximeter, eg 92 % Cardiology appointment not for another few weeks. It's dragging

Have a lovely weekend

I think I'm catching up on my over exertion from last week :( Feel like I've been hit by a bus.

Had a lovely time sitting in the garden soaking up the sun, but I think sometimes it's too much on the senses as noise from neighbours, birds, traffic etc means I don't rest properly. I'm just considering spending £25 on a pair of fancy ear plugs.

I read this article this morning - I thought it gave a good perspective on why we should avoid overdoing it on the better days.

themighty.com/2017/04/importance-of-avoiding-post-exertional-malaise-with-mecfs/

Oh god! Fantastic link missis....too late for me! I am BOOMING!!!! Solar powered!

Been out in garden most of the weekend pottering, even had . It was a fabulous time. I've really not gone crazy busy, but I know that feeling so well now is a sign that I am in that danger zone....and a crash will be next . I now see how easy it's been to get in this cycle in the last few years. That article summarises it beautifully, thank you.

I am using the energy from the boom to tackle my PIP today (they have sent me another form ). I guess though I should be fighting against the 'feeling well and wanting to do stuff' and take strict rest. I will stay in bed today, but will it be enough?

So sorry to hear you are at that miserable hit by a bus stage. Has this coincided with the Easter hols too, for a good dose of guilt on top? Bless you.

I understand completely about the sensory over-stimulation outdoors. I bought these which are pretty good (when you actually follow the instructions and warm them and hold them in for long enough to mould to your ear).

www.amazon.co.uk/gp/product/B01IW3XLNE/ref=oh_aui_detailpage_o06_s00?ie=UTF8&psc=1&tag=mumsnetforum-21

I wanted 3 sets, so that I could pair them with an eye mask and a blanket and place each 'survival kit' upstairs, downstairs and at the end of the garden in the sheltered sunny place.

I do so love being outside (or lying near the door) and this is where I am happiest. However the environment is so stimulating that I often begin to find it uncomfortable. I decided to position helpful aids around to enable me to bear it a bit longer. However, I have found that when I have reached my 'sensory peak', earplugs, eye mask and a heavy blanket do not exclude everything. I HAVE to go back inside or retreat from the window/doorway, shut doors and windows, so that I can't feel any breeze on me, hear external noises or see movement. I need the utter stillness! Always sad to leave the sunshine and twittering birds behind, but it's what my body tells me to do. Humph.

I hope you start to feel better soon

So pleased you've been able to get out in the garden - and been reasonably sensible about what you can do - love that you've even had

I'm feeling a bit brighter today - dc's are away atm so dh has instructed me to not Do Stuff :o

Hope the pip isn't too traumatic - did they just resend the original form through?

@Badders123 hope those migraines have buggered off, i have that type too, real PITA

@WoodYouBeHappy glad this thread is still running as its been helpful to me too as ive popped back a few times to follow it even its my first post on it, so nice to meet you

@MissisBoote [waves] in a friendly non stalkerish way

Glad this thread isnt a quiche :)
Hope the forms are filled in and appts are being attended, the sun seems to help some people (not me) sadly

Hey, more people!!! WELCOME smurfy2015!

Even though I'm sure you would rather be somewhere else!

Yes this thread is still running, in a sort of... two old dears limping along comparing ailments sort of way . Sorry, missis We're not even that old, I just feel ancient!

So pleased to know that it was helping you smurfy. I feel I have a MN community commitment to keep it running and put back what I have got out of it in the past. I wasn't actually sure how useful the wittering was though

Really sorry to hear the sun doesn't help you. Would you like to tell us a bit more about your challenges? No worry, if you're happy just experiencing the companionship of chronic illness. We're not particularly good company though, as you probably know.

Hi Missis. How are you? Following those DO NOT DO STUFF instructions? Maybe you are getting a proper rest? I absolutely hate not doing anything. I know it's resting and I know it's important, but I get twitchy as soon as there are signs of life in my brain and body and I just have to 'do a little something'. Probably why I keep crashing

Slowly filling out PIP form. DH wrote them an update letter including new medical evidence and they have sent us back another form to assess where we are now. Hope that doesn't include a PIP assessment F2F. Mine was painful in all sorts of ways. Spent forever looking for copies of original so I can copy stuff across where possible. Poor brain.

Hope everyone is coping out there. We just have to keep riding the waves and keep afloat. People tell me it will improve and we have to believe that.

Hello smurfy hope you're doing OK?

I've been very good and not done a thing over the last few days apart from making a massive vat of pasta sauce.

Dc's are now home and being left to their own devices - quite literally - minecraft has been a godsend :o

Dinner, then early night for me again :o

I've also just bought mini these earplug. I shall report back on how effective they are.

wood will be keeping fingers crossed that you don't need a f2f for your pip.

yesterday was spent mostly playing with the cat

also was emailing stuff to partner as he is unorganised and has got a esa reassessment form in the post so i sent him a copy of his form from the last time, he was very surprised i had it as he felt could ask esa for a copy of last form when they would send him this one so its come in really handy

a tip for any of you, after you get a decision on esa or pip write and ask for a statement of reasons, as it will be useful for next time around as to why you were awarded x award in x year - for esa its esa85a

It might also give some indication of when you might next be assessed so you can prepare in advance of getting the forms