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.

Good idea to go back to the doctors badders. A referral definitely sounds like it's needed especially if they're happening every month :(

Any chance of a rethink on covering those shifts with your dh away?

It's only one shift and I don't like to let them down
I'm hoping I come out of the Dr with a plan at least

I know what you mean about not wanting to let people down.

Are you on pain relief for your fibro? Have you tried a tens machine on your shoulder?

Do you think it might be worth booking a double appointment so you don't feel rushed?

I take paracetamol - co codamol if it's bad
I can't take nsaids due to stomach
I'm wondering if the hrt is what's causing the constant low level nausea I'm experiencing ATM
We all had a dreadful stomach bug - I spent Mother's Day cleaning up 3 people's vomit 😞
I still don't feel quite right

In fact I have some nefapam left over from my gallbladder surgery but only take them if dh is here in case I get woozy

I should make clear my fibro dx was a case of
You haven't got lupus
It's fibro
Take painkillers
Bye

Ask for better pain relief for your fibro (my dx was at the same time as me/cfs - basically you've got pain as well as fatigue etc so you've got both )

I'm on nortriptyline, but others get relief from amitriptyline or gabapentin. (ignore if rubbish spelling - no energy to check properly :o).

A sickness bug is the last thing anyone needs but might be with taking some high strength probiotics to see if that helps settle.

Might be worth printing this page out for your gp:

www.nhs.uk/Conditions/Fibromyalgia/Pages/Treatment.aspx

Hmmm
I'm on nortriptyline as a migraine preventative - it's not working!!
I will ask about pain relief thank you
X

Ye gods Badders you have hell of time with your health. Seen some of your other recent threads. Bless you. You can't go on like this, I agree you need a referral and proper assessment.

Do you have time to put together a summarised typed 'Review' of your health and how it affects your life? I.e. in 2 columns. I found that once I'd used up all of my energy getting to the GP, I fell physically and mentally apart in front of her and it was difficult to get a clear and concise viewpoint across, without looking like a deranged loon

I often emailed her first too so she got a complete set of info. I don't think one consultation of 5-10 mins is long enough to go through all this either. You could just pop the summarised table in front of her and use it as a basis for discussion. It saved me SO much energy.

As my cardiologist said, it doesn't matter what works or why, the key is to get you feeling better and back to taking part in life.

I don't have Fibro (I don't think) but I do have a lot of shooting pains all over my limbs. And a really painful shoulder. Amitriptylene takes the edge off for me. Does heat help you?

Oh and I'm also from the "Don't like to let people down" brigade . I'll be honest, I think that this approach over a good many years has probably resulted in my severe health problems now . Time to look out for you Badders [hug]

I've written a list! 😀
It's brief but to the point I think and will jog my terrible memory!
So it runs like this:
HRT - could it be causing my nausea? Could I try a different one? It's not made much difference tbh
Fibro - left shoulder bad (I'm right handed) what other pain relief is there?
Reflux - ask to go back on PPIs
HP migraines - referral to migraine clinic/further tests?
I know I'm vit d deficient, Peru menopausal and have Gilbert's but all other bloods come back fine.
Sigh
I feel like such a time waster!

Sorry, crashed out. Crikey, that's lots to talk about.

Thinking of PIP, they are not interested in a list of symptoms but HOW bad YOUR symptoms are & how they affect your daily living. Hopefully you'll have time to clearly get across what you can't do because of these health issues. My GP started to listen when she realised I couldn't leave the house, pick stuff up from the floor etc

And no, you aren't a time waster! Good luck for today. Have a read of all your ex health threads if you have time (are they still around?) to remind yourself how challenging it has been (Us stoic types can forget the horrible bits & keep ploughing on as an essential survival strategy)

Yes - you're definitely not a time waster.

I also used to email my gp in advance - I found this especially useful when I have phone consultations.

Good luck for today

I had an awful night's sleep last night - rare for me - but I started randomly worrying about loads of things that I have no control over. No idea why as I'm not normally an anxious person .

I feel wired - need to try and relax to stop my mind from whirring.

Is it the moon Missis? . I started typing about my wired night too earlier and then deleted it. too much me me on this thread

I call it my adrenalised stage and I find it really hard to rein in again. It's normally triggered by me pushing myself (often just mentally) and then not being able to slow my brain down. It kind of layers up and I don't even know it's happening...

Yesterday I was quite busy on the laptop in bed as my brain was starting to come back online. Once it got going, I found I was out of bed by early evening and able to function physically again. Then a friend dropped something in last night and we persuaded her to come in for a quick catch up. No visitors for a while. Felt really well (uh-oh!) and went to bed happy. Well, wired I realised and slept so badly. Awake with the birds still wired. I suppose I should now be meditating to try and end it, not on MN .

As you know though, these wired moments are quite useful for getting stuff done

I am SERIOUSLY considering The Lightning Process. Did you see my other thread? I have had some PM's from MN'ers and it seems that the LP can teach you how to cut these wired/adrenalised stages out and for some, that brings complete recovery from ME/CFS

I do seem to be stuck in an adrenaline loop and am getting really frustrated that my strategies to control it aren't working. What do you think?

Well that went....ok
He told me off not booking a double appt
So we've only dealt with 2 of the issues..
He has put me on a PPI and upped my nortriptyline dose and is sending me for a hip x day
I have another - double! - appt on 19th to discuss the migraines and HRT and the xray result
I think his suspects OA :(

I really don't know wood
I'm a natural cynic I guess. I'm bothered by how little they will explain if this process - I know they need to make their money but it smacks of being a bit cultish to me?
If you can afford it - I assume it's very £££? - then what's the worst that can happen?
You are out a few quid?
If you decide to go for it I really hope it helps x

Have you tired CBT wood?

Ok, sounds a partial success then. Sounds like he was listening. A hip x-ray? For your bad shoulder? Sorry, I get confused very quickly.

But yay for more pain relief. It's only when my pain subsides (why?) that I realise how exhausted, tense and miserable I've been feeling and it reminds me how much of your reserves are used 'fighting' it and trying to get on with life. I do hope the Nor makes a difference for you Badders

What makes you think he suspects OA? At least things are moving forward and you have a PLAN to focus on and a follow up appointment. I think being in the dark and not having a correct diagnosis and treatment plan is a miserable place to be.

Thanks Badders. I totally agree with you about LP. DH said if he finds out robe-wearing is involved, he'll come and collect me from the course

Do you recall the lady last year who was v ill and documented about going on the LP course on MN and then recovered...and deleted her post? I can't remember why........

ha. Yes you remembered right but he palpated my shoulders and arms and didn't seem to concerned but when he palpated my hips he was unhappy and so off for an X-ray I go!
I will up the nortriptyline and take the PPI til I go back
Just keep chucking back the paracetamol til then!
I've remembered what I really disliked about LP / I've heard that did those who it doesn't help that they are told they didn't try hard enough or believe enough in the process - that sits very badly with me.
People with me/cfs have enough to deal with without adding blame to the mix
I don't remember the thread you mention but I know LP doesn't generally get a good rep on mn
I'm quite open to "different" approaches - my eldest son has done RRT and AIT both with great success but I dunno...something about LP bothers me
Sorry I realise that's not helpful and feelings are not data!
Off to work now...

Yes, I've had a course of CBT -which did not really help- but have not yet started the ME/CFS CBT (18 month waiting list?). Was hoping that this would be more useful but it is delivered by an ex-PACE trial researcher. Was wary that it might be another course of "look you really need to think more positively, get out of bed and get out" stuff

anyone? Time for a break

Oops. Crossed post. Good luck with work. Be gentle if you can

badders Great news that your gp is taking the time to go through your concerns even if it takes a few appointments.

I think you're right on the adrenalin front wood - I tried to rest as much as I could yesterday but I think I'm still recovering from the weekend. When I close my eyes they just ping open.

Hi all,

Can I please crash ? Ive bene reading your thread trying to gain some perspective from the other side I guess.
My DH has had CFS/ME for around 10 years but in the last 2 years it has got very , very, bad and we are truly going through some dark times.
He no longer works and just seems to be in agonising pain all day.
Just before christmas he was admitted to hospital with blood in his urine, inflammation markers in his blood and agonising pain in his kidneys.
He had a CT, an ultrasound and a camera inserted. All came back as normal !!! He is now on a 6 week course of antibiotics as he is still in so much pain.
His CFS/ME seems to have tripled in symptoms. He sleeps all the time, is freezing cold every day, confused, tired, depressed you name it.
I have three children and work fulltime. I look after them and him when I am home. Im frightened. I dont know how much more to subject them to. We cant plan days out or holidays as he just isnt capable anymore. I know thats not his fault, I know he's missing out.
If the kids need anything I do it. I took them away for a few days in the easter holidays by myself as he just cant do it. He barely leaves the house.
My eldest (14) is now begging to go abroad and have " a proper holiday" and i will be honest I want to take them. I have approached him about it and he says he cant commit to that, which I understand and then snaps " just take them, Ill just miss out " but I feel thats not genuine and also he clearly doesnt want us to go !
Is it unreasonable to take the kids away without him ? Its not his fault he's ill but its not there's either ! Im so scared that growing up aorund all this illness is going to impact them in some way.
I dont even know why Im asking this here im just at work and venting I guess.
Im so lonely and I think he is too, but CFS has literally torn us apart !