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.

Morning. Do you think we should try and get some more mates on here Missis? We could end up with pages of us both of us repeating "Me too!"

I forgot to add in my pp that I was inquiring about relapses because I was slipping into one after the Dr visit . Good news however is that I think I'm emerging back out of it now, whereas in the past, it could go on for weeks or months and I thought it would never end . Interesting that our PEM recovery time is shorter in the summer than the winter. Why is that?!!!

Interesting that yours starts in the sinuses. I have always had problems with sore throats/tonsillitis, so I guess that must be my weak spot. However, in the 6 months before my massive ME/CFS/crash-into-doom, I developed rhinitis (first time ever) and I spent that whole time sneezing and mopping up my eyes and nose. Weirdly, it disappeared as soon as I had the flu/ME/CFS crash, so I wonder if it was a pre-cursor to the main event?

But yes, I know exactly what you mean about having to 'woman up' and meet people who've come to work on the house. They have no idea that while they are chatting on, our last precious energy reserves are sliding down into our feet and we are about to fall over.

I thought this cartoon -although about depression- really sums up what's happening here most of the time.

Your cosy cave will be much bigger Missis, as you probably need to make space for your children . Or are they too old now?! How was Parent's Evening? Did you make it ok?

Love the cosy cave analogy :o I just need it to be me alone - even just having someone sitting next to me sucks my energy when I'm relapsing.

Mine are old enough not to want to join in. Made it to parents evening and despite minimal parental input they're all doing well. Fell asleep this morning. I find that on better days I never sleep during the day so I know when I've overdone it if I have to nap rather than just rest.

Yes, where's Badders? If anyone else is reading don't feel that this is a quiche and you can't join in :o

No, it most definitely isn't a quiche! Come and join us!!

Actually, I'm hoping that people aren't on here as their chronic illness has improved a bit and they are outside with some gentle healing sunshine!

So glad Parent's Evening went well and you made it. Kids are resilient things and I'm sure that yours will end up as caring, well-rounded members of the community with good self-awareness and life skills. Tho if they are teens now, it might not seem like that

Yep, I get the Daytime Sleep Alert message too. Hasn't happened for a few weeks now I think.....

Aiming to get downstairs later. Have a real problem with containing my adrenaline, do you? It's like I've got going -finally- and then I can't stop it!!! I need strategies to only do little bits and then STOP. I feel so well when I'm 'active' and it feels so good . I don't realise I'm still buzzing. And then I crash Seems to be only when I start sliding into the crash, that I realise I was adrenalised. Why am I such a slow learner???!!!! Humph

Actually there are even less friends over on my cardiology thread so I'm copying this here!

Ok, so I've had my -pre-consultant- ECG's and recovered from the subsequent relapse. Only 1 min resting ones, so alongside the supine one, I persuaded my GP & Nurse to allow me to sit up for one and stand for two of them.

The seated and standing ones say 'abnormal ECG' but that was no surprise. I was actually having a good day, so the top HR only got to 128. Dammit. It does however list:

Ventricular Trigeminy
Biatrial Abnormalities
Multiple Ventricular Premature Complexes
Right Atrial Abnormality etc

It all sounds very exciting, but I fully expect to hear that it's nothing to worry about, as that's all consultants have told me in the last few years.

And I got to play "You are probably deconditioned" Bingo while I was there.

BINGO!!!.......from the nurse

Feeling much better what a fraud and hardly tachycardic. Able to stand for longer, pain reduced, brain working more efficiently.

Just had a GP message to say B12 is too high as well. Range is 180-900 ng/L and mine is 1508 . Well, it shows those Jarrow B12 pastels work. Am now wondering whether the tingling and numbness in my hands is a side affect of too much B12?

It must be a nightmare being a GP/Consultant these days with us self-treating and arriving to appointments armed with 'evidence' from Dr Google . After a few years of being absent from real life though, you start to get desperate.....

Not a fraud at all.

The only thing consistent with me/cfs is its inconsistency.

My granny vitamins arrived today.

Can you overdose on b12? I'm on the jarrow tabs too but I'm still at the lower end although creeping up slowly.

Just sitting in my sunny sheltered corner of the garden enjoying feeling the heat on my face.

Dh is off all of this week, which is lovely, but I do find it difficult to rest properly when he's about - I feel like I should be up and about doing stuff. I know it's stupid but you get what I mean.

Enjoy your respite :o

Well, my post was slightly premature. Back in bed now, wiped Thanks for reminding me about that inconsistency saying!

B12 overdose seems to be fairly non-toxic. GP wasn't concerned. Dr Google says it may cause itchiness and reddening of skin, sometimes tingling and urine changes. At least that will save me some money this year and clearly I don't have B12 absorption issues . Folate was good too. 18.4.

Yes, I know exactly what you mean about resting properly with people about. Although, my approach is changing here now. In the past, as soon as DH was here, it meant we could achieve something as a team effort, so I had to get up. I was even know to tidy up a bit and clean upstairs, while the cleaner was cleaning downstairs .

Now though, it is clear that I am not recovering and really must do less. DH will now wrap me in blankets and insist I sit and watch with a pointy finger while he gets on with things ten times slower than I would be I used to feel guilty, but now I try and ignore that.

Have a fabulous week and enjoy having another pair of hands around and use it as an opportunity to rest a bit more? Sitting in a sunny sheltered corner sounds fab! Smell the roses while you can

Thanks - it's been lovely and sunny here in the afternoons so I've been able to sit out in the garden and order dh around - lots of plant moving going on. Hard to give instructions when you can't find the right words - I find it so frustrating sometimes - why can't people read my mind yet

I completely overdid it on Monday and attempted some light weeding - big mistake :o

Re Critical Illness Insurance.
I have been paying it for 30 years.
Guess what?
The neurological condition I have developed is not on their list of approved conditions.
I have had to give up my job and can no longer drive. But the CII was a waste of money.
I have taken financial advice and my advisor has written to them but they won't budge.

How frustrating for you endof

I actually bought a policy that excluded cfs/me

I didn't think anything of it at the time as I didn't realise how debilitating it was. What an idiot I was.

endof Gah, how galling! 30 years of critical illness payments!?! I'm so sorry that you've had to give up work and driving. It's a shock isn't it?

Whilst budgeting, we just simply focussed on protecting DH's income -as the main breadwinner- and thought it wasn't necessary to cover my (low) income too. Durr. Sounds like with yours and MIssis's experiences, we wouldn't have been able to claim anyway.

I definitely wouldn't have had the energy to fight it. My health is not improving and I do wonder how much of this deterioration has been down to the constant stress of communication demands with work/pensions/ PIP/ESA people. It's been soul destroying trying to constantly explain why I can't stand up, why I can't leave the house and why I can't work...with very little physical evidence/explanatory test results

endof I recognise your name. I'm so sorry for the loss of your son last year .

No wonder you've been so ill. Has the inquest passed? I've been there too (slightly different dynamics) and the pain that's triggered at the inquest can be suffocating. I do hope you have people to talk to.

Wood - sorry didnt mean to derail your thread.
I have had my diagnosis for almost 2 years. I had already made the decision to retire ( on the advice of my neurologist) well before my son died. I had spent months having all sorts of tests and investigations prior to the diagnosis being confirmed.
My illness got a lot worse about 3 months before ds died. During that time I was being prescribed different combinations of meds.
Then when ds died I got a lot worse but seem to have got the right medication now.
The Inquest was heartbreaking. But nothing can bring him back or change anything.
The CII is just one more thing. But nothing matters compared to losing my son.
Thank you for your kind words.

You didn't derail endof. I did

Wishing you strength and light for the road ahead. It's still early days. Glad the medication seems to have settled for now. Coping with grief and chronic illness is a tough battle no-one should have to endure .

Do be kind to yourself

Sorry for your loss endof

I'm having a lovely week with dh here - although not resting as much as I would be normally and dh has been trying to tell me not to do too much. But it's nice to have some company and the sunshine has been glorious.

That said, I have enjoyed the sunshine and got a grip on the garden before the weeds take over.

Have also finally bagged up my work clothes and sent them either to the loft or ready for the charity shop. I've been keeping them in storage under the bed just incase I get better - who am I kidding :o

At least I've got more storage in the bedroom and don't have to see the nagging reminder that I used to have a different life.

Missis what a shame we aren't neighbours! We could borrow each other's DH's! ..................... you know what I mean!

I LOVE having extra help at home (when I'm not adrenalised). I definitely do less when I have a Fetcher & Carrier about the place! Great that your DH is off when the weather is good. Envious of your weeding! I've been in bed lots but sat in the garden for 10 minutes earlier....twitching about all the jobs I want to start. We have to be SO disciplined with ME/CFS!

Sad about your work clothes. But it does show that you aren't fighting it and now just have space for you to store your 'new life' in, what ever that may be. . I have given up on visiting hairdressers and have been thinking of throwing out lots of high maintenance clothes/beauty stuff. I mean, really, am I ever going to use my precious energy to put heated rollers in my hair? Unlikely!

MissisBoote - was that Swiss Re?

"One of the PACE trial's principal investigators gave a presentation on the results of the PACE trial to Swiss Re insurance. Swiss Re's report of his talk detailed the potential use of mental health exclusions to cut payments [97], while a 2013 Swiss Re presentation on their approaches to mental health problems describes their use of specific exclusions for CFS and ME"

www.centreforwelfarereform.org/uploads/attachment/492/in-the-expectation-of-recovery.pdf

fuckers!

That PACE trial has a lot to answer for. And it's still around!

I'm not sure who it was with CFSKate.

That report is chilling .

I've crashed and burned big time. I feel like I've pulled an all nighter at a 90's rave, minus the fun, drugs, dancing and pumping bass :o

Back in bed with the electric blanket back on.

Yep me too It's that sun I tell yer!

Really struggling with adrenaline. I need to summon a bit up to move about and get food and then once it starts pumpin', I'm wired and can't bring it down again. Not slept very well this week.

I hope it's a blip Missis and you get back up before the end of your DH's time off. Ah, it's nearly the weekend. Your house is about to get busy again...... Rest now. Get warm. Sleep

Ooopsie. NC fail. Stoopid brain

Thank you MNHQ for name-changing assistance there. Once I get my PA, I'll be more on the ball with my organisation

Have stopped taking my multi vits and folate. My high levels of B12 and Vit D won't go down if I keep taking 100 % RDA ... but will I lose out on those valuable other vitamins? . Going to risk it! What a chancer eh?

How's your elderly vitamins Missis? Are you now booking coach tours and listening to Daniel O' Donnell? Oh and don't reply. You're resting today!

Have a nice weekend

Live life on the edge wood

Too early to tell with the granny vitamins I think. I am, however, getting dh to dye my hair for me this weekend as too much grey coming through. Bless him - he does so much for me without complaining.

Have you got anyone that can recommend you a mobile hairdresser? Mine is lovely - takes less than half an hour and I start to resemble me again. She only comes once every 3 mths so not too much of a drain on my energy consumption.

I still try and put a bit of make up on every now and again - it makes me look less ghostly and I feel a bit more like me, although I do curse myself when I get to bedtime and I've forgotten to take it off earlier in the evening.

Have you heard of yoga nidra? They're nice meditations which might help when you've got adrenalin peaks that won't dissipate.

I started listening to the new serial podcast this afternoon and true to form fell asleep after a few minutes and then woke up just as it ended :o

Have a nice weekend too