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.

Me too!!

Head better though

Glad your head is better. Was there anything that triggered it or is it something that can come from nowhere?

Is it wrong to feel slightly comforted by us all living almost identical parallel lives? :o

Yes it is . I'm STILL lying in bed reading this & it's comforting to know there are other slovenly slackers around

So glad your head is better Badders....which auto corrects to Bladders....

Wishing all of us reading, a warmer, pain-free weekend with enough energy to do something joyful

See you gals on Monday

Not really boote....I think this one was hormonal so bit worried I may have this every month to look forward to! 2 whole days lost 😞
So glad I gave up work now...although I'm in 2 days next week cover.
My only plan for the weekend is takclinthe ironing pile...then watching rugby with Ds and going to pils for lunch tomorrow.
Still feel a bit fragile but lots better.
Busy week next week so I'm going to have a lazy weekend!

Badders ironing isn't joyful

Have missed so much of Six Nations which is a benchmark of how bad it's been. Hope to catch one game today....without getting tachycardic

Glad you're feeling better. Take it easy this weekend though.

Morning All. Everyone surviving?

Have nearly finished my battles with PIP/ESA despite ESA contacting me constantly with texts and letters of contradictory messages to fry my brain Anyone got any positive news from either of them?

Now just bloods and cardiology to go.

GP asked me what bloods and together we came up with:

Full blood count
B12
Vit D
Thyroid
Folic acid
CBC I think? For inflammation?

I forgot cholesterol, so will add that as it's never been checked. Anything else I'm missing in this 'grabbing at straws' exercise?

Found this on Phoenix Rising, re: bloods

CBC, Basic Metabolic Panel, thyroid tests, B12, folic acid, CRP, ESR and a basic urinalysis.

Have never supplied a urine sample. anyone else? How useful is that?

I think that's probably covered everything.
Trying to remember what was on my list. When I've summoned the energy to go downstairs I'll check my results to see what was included.

No news from pip for me other than the receipt text message. I'm not expecting anything for months tbh and am putting it to the back of my mind until I need to think about it :o

I had a rubbish nights sleep which is really unusual for me - woke up at 3am and didn't fall back to sleep again till about 6am. Had really tight/tensioned shoulder muscles that wouldn't relax. Couldn't work out why then remembered I'd been out in the garden pruning a climbing rose in the afternoon. Not exactly heavy lifting but obviously repeatedly lifting my arms up was too much after a winter in bed :o

I don't think I've ever had a urine test.

I've come to the end of lots of pots of supplements and found these vitamins for over 70's. It looks a good combination - includes lots of what Dr Myhill recommends but in one dose (rather than the many pots that I seen to forget about :o).

Missis don't go downstairs for me! That might be the last of your energy for today .

I've been holed upstairs for the majority of the last few weeks and trying to properly rest. DH is great at stocking up on everything up here that I need. Occasionally there are bits missing and I hover on the landing wondering whether I can source the energy to nip downstairs.... Today it's homemade . In the tin. I must be poorly to not consider it!

I also have waking nights like that . I wake up and feel anxious, tense & often tachycardic. Although exhausted I can't get back to sleep. I guess it's the wired bit of ME/CFS. I wish we knew all the medical explanations for the physiological side of it. I can stop giving myself a hard time then for not relaxing enough, not resting enough, allowing too much stress etc. Why do I feel responsible for this?

Missis I had a bad night and day after getting outdoors a few weeks back and hanging 2 sheets on the line. It was a MASSIVE effort but well worth it (I thought) to have wonderful outside-fresh bed sheets ........Until the next day

It's so frustrating that I have to let go of so many (simple) things I like because it's just not worth the effort and coping with the after-effects

Oh cheers me dears for the elderly medication advice! .

I too have come to the end of a load of supplements and -as usual- am debating whether to save the money and stop buying them or keep going........ in case it's the only thing which enables me to still get out of bed myself.

Daily, I take:

Co-enzyme Q10
B12 5000 mg sublingual pastels
Vit D 5000 IU
Centrum Multi Vit
Folate 800 mcg
Omega 3,6,9
bovine colustrum

I researched the doses carefully. I hope I'm not overdosing. I know my GP is pretty ambivalent about them all. With everything you read about ME/CFS and not being able to process vitamins and 'bioavailablity' of some supplements, is it really worth it?

I know what you mean - I go through fits and starts of taking them.

I've been taking pretty much the same as you with added d ribose and l carnitine and sometimes alpha lipoic acid. I think I'm going to try the granny vitamins. For me the b12 and vit d are essentials that I try and take every day. My b12 results have doubled from 200 to 400 so it's slowly increasing. I'm still researching into doing b12 infections at home.

Ah, I'd forgotten about d ribose and l - carnitine, which I had researched and then didn't buy.

I think I'll sit tight with what I have up to the Cardiology and then maybe add more in. On a whim

Glad to hear your B12 in increasing. Mine was already at nearly 400, before I supplemented, so will be interesting to see if it's going up.

GP was sniffy about B12 injections, she said "we don't do those anymore". I think she's losing patience to be honest. My consultations/telephone appointments feel rushed. At least I haven't been sent to the MUS (Medically Unexplained Symptoms) clinic that I was just reading about on a ME/CFS Facebook page .

Oh I'm terrible for remembering to take my vitamins!
I'm supposed to be on vit d and vit c and EPO
Had a dodgy stomach for a few days so haven't taken them
Had a "good" day today in that I got a lot of housework done and managed to go to the shops
I will probably pay for it tomorrow but I'm used to that!
I'm now in bed watching Netflix

Since I've had a monthly pill box organiser and set an alarm on my phone, I've become much better at taking all the Vits. Not sure they're doing any good though.

Sunshine Warning for us!!! Beautiful Spring weather approaches and being solar-powered, this is the danger zone. If the pattern continues I will develop a Spring bounce and achieve all sorts of wonderful things, which have been building up this last year.

By July I am usually on the way down and spend July-Sep lying horizontal with severe flu symptoms

I saw the long range forecast yesterday - I so hope it's true. I started doing some very gentle yoga in the autumn but haven't been able to do any since it got cold.

I have form for popping my pills out and then just leaving them randomly in another room and forgetting whether I've taken them or not :o

Hope you're OK today Badders?

Thank God for Netflix.

I listen to quite a few podcasts too and I'm perhaps a little too excited about a new season of serial called S-town.

www.independent.co.uk/arts-entertainment/tv/news/serial-new-podcast-s-town-season-3-a7560681.html

Have either of you listened to serial? I found the womens voice really soporific that I used to doze off. But it was slow enough for me to follow without getting too confused :o

I agree about Netflix, although it's only been in the last few months that I've been able to watch a little TV - with sound low. I'm still so noise sensitive and higher pitches seem to be most triggering.

Radio. Mm. Used to love podcasts. Now I seem to have an attention span of a gnat and can't concentrate on the words. I don't think I do with TV either, I'm looking at the pictures .....and driving DH nuts with "what's happening, who's that, have we seen them before, why did he say that? etc etc...... .

I did have This American Life on my lists and really struggled with it. Will try S-town though, thanks.

Yucky weather here today. Hope you are both ok Missis & Badders. Typically am feeling a little better, now that the ECG and Cardiology appointments are approaching. . I shall be sidelined off to that MUS (Medically Unexplained Symptoms) Clinic if I'm not careful

Completely empathise with the sound sensitivity. During the day if I have the TV on I have it turned down to about 2 or 3, when I come back in the room I can hardly hear it again. Then dh will come home and has it on about 12. I stealthily turn it down and he stealthily turns it up :o

We try and watch boxsets together to try and have some activity that we do together and dh is bombarded with the same questions from me - I often joke that's its like living with an elderly aunt.

I really miss having music on - we used to go to loads of gigs and festivals. Dh loves his music but can only listen to it in the car. Although he does wear headphones when he's doing the housework. I wear earplugs if I'm out too.

It's rubbish here too today - I was contemplating taking the electric blanket off the bed, but think I'll wait another month as I get so cold in the day time.

Glad you are feeling a little better wood. Enjoy feeling a little lighter and don't be tempted to Do Stuff .

Have you got the dates through for your cardio & ecg? Hopefully it won't take it out of you too much.

me-pedia.org/wiki/Welcome_to_MEpedia

Back later/tomorrow

Crikey Missis I could have written every one of your paragraphs up there ^ Are we merging into the same person?!

So, I've been out of the house! woo-hoo! To the Dr. Got a massive list of blood test results e-mailed back from my GP within 18 hours. Fantastic service. I've been advised to cut back on the Vit D supplements. Mine was 155 . Got all the figures here, so I'll be having a consultation with Dr Google later to see how it all compares

As usual, no evidence of anything wrong AT ALL which is encouraging for the normal patient. However, years down the line of being so sick you can't stand up, or see your friends, or make some toast etc and you really do need REASONS for it. Humph.

Missis after you've pushed your 'energy envelope' can you feel yourself slipping down again? Starts with a sore throat, then stabbing pains all over, raised glands, feel incredibly heavy, struggle to get upright for loo, head hurts, sore eyes etc Then a real intense dose of 'flu' which can last 12 hours.... or weeks.

I "think" I am starting to recognise it quickly and take ibuprofen, roll out the hot water bottles, hat, electric blanket, bed, extra duvet, lots of water and give in to it. (Am a natural fighter I think!). I'm sure that my crashes are a bit shorter these days as a result.

Just remembered, we play WTF is going on with the TV adverts?! . All adverts must be muted & avoided due to ridiculous volume levels and flashing colourful in your face nonsense.

I've noticed DH giving them sideways glances trying to work out what the hell the product is...... Poor chap. Ah, happy days here

Yes - the adverts!! Why are they so damn LOUD?

That's cracking service by your gp. Hope you haven't got lost down a wormhole analysing the results.

Yes - I immediately know when I've overdone it - yesterday being a classic example. I had a visit from a mobile hairdresser which was lovely trying to restore some elements of glamour to the bed hair. Was resting from that when I had someone else visit unexpectedly - having some work done on the house so needed to put my best brain on and try and be technical. Within minutes of them leaving I felt the energy draining from me and I went ghostly white (more than usual). Could barely speak a coherent sentence and had to retreat to my darkened room. Dh was out all evening so I had to do my best not to tell at the dc whilst nagging them about showers when I decided to leave them to it and fell asleep till the morning. Today I feel wrecked but have to drag myself out to parents evening (luckily we have the first slots and I have zero questions).

I find that my sinuses are the first thing to go - it's like sinusitis is my 'flu' - then my glands get swollen and the heaviness is unbearable. Like you, I'm definitely better at giving in to it rather than pushing through - mind you I'd be missing parents evening if that was really the truth :o

It normally takes me at least 24 hours to get back to 'normal'. I did find that in the summer my pem recovery time was definitely shorter than it is in the winter.