Anyone else with a chronic illness worried that it's all downhill for them from here?

[Amidoingitcorrectly]

I feel so sad today about my health. Last night and today were difficult with symptoms, and it just struck me how tired I am of it and how tedious it is, and how it will be like this for the rest of my life. The likelihood, in fact, is that my easier days are not coming back and that things will continue to get harder.

It's like that boiling frog analogy I see on MN sometimes. You suddenly realise how much compromising you have done for your health to cope as best you can, and that's that.

Not looking forward to things continually getting harder but hopefully it will be ok somehow, and hopefully will still be alive and able to enjoy life in my own special way for another while yet!

Does anyone else feel similarly at all?

That sounds bloody amazing!
Well done! Great news re rheumatology too.
I have had nothing but negative experiences with them for 40 odd years. V dismissive
Recently been re-referred, God knows how long I'm going to wait and hoping to meet someone nice this time and maybe not a consultant from the dark ages.
The wonderful physio who referred me has since left the service and told me she's sometimes ashamed when she hears patients' stories and another nhs professional told me she hopes that some nicer and more compassionate consultants are coming up the ranks now and that I have a better experience than the last one (approx twelve years ago).
I have adhd too, we're certainly blessed with diagnoses on this thread if nowt else!

I’d been completely ignored and told I was ‘difficult’ until I had to lie face down on the ground for most of the day as couldn’t move for pain or fatigue. Eventually we just went private and I found the most wonderful endocrinologist who couldn’t help me but wouldn’t accept I was ‘just fine’ so sent to me to a cardiologist who then also couldn’t find anything but wouldn’t accept the ‘fine’ so then a rheumatologist who did a very niche test and found RA. Which then explained all my symptoms and why I seem to get every single bug going 🙄🙄🙄
same with the blood disorder. Had to have a PE for months undiagnosed until one a&e majors consultant wouldn’t accept the norm. And then at least another 8 months before the real issue was found.

I now know the nurses in a&e by name 🤣🤣

Is PE Pulmonary embolism? I'm sorry to hear that, must have been scary

Oh sorry yes. Pulmonary embolism.
It had been left so long it was breaking apart but it was really rather painful wow

Do you have a 'teacher' voice and look? Could you find one if you don't?

It may be purely coincidental, but the moment I turned up at appointments wearing vaguely tailored items or dark jeans, a shirt and a blazer, rather than my customary Primark jeans/faded t-shirt and carrying a (cheap) leather bag instead of a tatty backpack, and started responding to patronising statements with my grandmother's voice, the way I was treated flipped 180.

And it's been quite satisfying to feedback on something with a What Went Well to see the doctor has been nudged out of his complacent expert role and volunteers treatment suggestions for an Even Better If...

I was nodding away at all of this post.

A year ago, I’d been back from holiday for a couple of days (felt so poorly on holiday - I don’t do well in the sun or with a change in diet) and got to work feeling ODD. I couldn’t put my finger on what it was for a couple of hours until I suddenly realised that I felt normal. No pain, no fatigue, no symptoms at all. I felt completely normal and it had been so many years since I’d felt that that it felt wrong. I walked into town to get my lunch and could have cried with joy at how ‘nothing’ I felt. I convinced myself that somehow the holiday had fixed me. A few hours later I finished my shift, went home, had a shower and…completely crashed. I haven’t felt normal again since. I have no idea what happened for those 8 or so hours but it was lovely.

Also…yes to having nothing to talk about any more because my life is reduced to this. I’ve been putting off meeting up with friends for a long time now because a) I just haven’t got the spoons (I hate the whole ‘spoons’ reference thing - it always sounds so victimy, but at least everyone knows what I’m talking about) and b) I am incredibly boring now because nothing happens in my life apart from feeling worse.

Also…yes to having nothing to talk about any more because my life is reduced to this. I’ve been putting off meeting up with friends for a long time now because a) I just haven’t got the spoons (I hate the whole ‘spoons’ reference thing - it always sounds so victimy, but at least everyone knows what I’m talking about) and b) I am incredibly boring now because nothing happens in my life apart from feeling worse.

This! It's driving me nuts right now - unsure why, as I've been this bloody boring for years already. I've started making notes about known developments in long-lost friends' lives, so I can perhaps (when I have the energy) call them with stuff to talk about. Even my siblings have given up talking to me: I know they don't "believe in" ME-CFS but, all the same, they seem to have cottoned on that I'm now Mrs Boring with nothing to contribute.

A fellow sufferer posted on facebook recently that she feels like a ghost haunting her flat Know exactly what she means.

I'm about to start LDN tragic how optimistic I am.
20 years of being ill, I bore myself.

@GarlicGrace Ghost haunting the flat is spot on isn’t it?

@stayathomegardener I’ve just googled LDN (hadn’t heard of it) and it sounds promising.

It does doesn't it!
Autoimmune, inflammation and now long Covid. 🤞
There's some great LDN Facebook groups and one doesn't need to get a prescription via the obstructive GP as a pharmacy in Scotland assesses your suitability.

Happy to be a group Guinea Pig here

My device keyboard works so badly on MN that I can't write my experience without taking all day. But yes, yes to all this, MN sisters. I'm 63 and dreading what the future holds

Dropping back in to say, off the back of your posts, I approached The Scottish Chemist and have been approved for ldn!
I've had to withdraw from my current opiate based pain (non)relief but I feel it could be really worth it if it can take me out of the hole I've been in for years!
I'm excited and nervous .
How long did people find it starts helping ?
I've been quoted something like 8 weeks or three months, then seen anecdotal evidence of people saying it started within a week.
Obviously I've been through this all for decades but coming off all my pain meds now with no back up leaves me feeling rudderless and of course in quite acute pain!

I have just looked this up to see if might be something that might help both my dds with their chronic conditions. One has CRPS and the other had JIA/RA & fibro plus some other things. I've sent them a link so they can read about it, but it would be nice if it does help them, and their drs will prescribe it for them.

That's wonderful - well done!

As an aside, even if LDN isn't suitable for you in the end, there is one advantage of discontinuing opiate medication; you lose your tolerance, which means that

a) if you go back onto it at a later point, you respond to it like somebody who hasn't had it before, which means you get more relief from lower doses/different meds,

b) you find out exactly how bloody effective a paracetamol and an ice pack can be, and

c) you are significantly less likely to have a doctor pulling faces at you and giving you a lecture about why drugs are bad - because you've had them before and stopped. On the occasions that I have needed something prescribed that has the potential for abuse, GPs have looked at my records, said something like 'Oh, yes, you did have them before' - or in one notable 'I wouldn't normally, but I can see clearly from your notes that you're not an addiction risk because you only take things when you absolutely have to, don't you?'

Just following up with LDN information, it started to work within a week!
Perfectly happy to accept it's all in my head normally but I can measure the decrease in inflammation by how far certain rings go back on my fingers that ive not worn since covid 03/20 and subsequent rheumatoid arthritis flare.

My sleep has improved immensely, sleeping through 7-8 hours and when I do wake maybe around 5am I'm sleepy and drop off again quickly.

My injured shoulder that I've had physio on since Christmas for little benefit is 80% improved.

My DH had an awful accident on Tuesday, crush injuries and had to have a full hip replacement, complete nightmare I thought he may die (he's actually ok and hopefully home this week) but anxiety has been surprisingly manageable and I've managed all his farm jobs since too.

Slightly fearful I'm going to abuse my improvements and slip backwards but overall I'm absolutely delighted.

No noticeable side effects either.

Really hope it helps others.

@Jellyheadbang @NeverDropYourMooncup @longtompot
@Goodyetalso

LDN update ⬆️

Yep, I have chronic conditions and feel isolated. I worry about the future as employment is impossible as things are.

I have a new found sympathy for miserable old buggers because if many of them feel like I do no bloody wonder they are miserable,.

Mine all came on at 60 post covid and then accelerated post vaccination.(4th) last September. It literally started the day the Queen died. All neurological shit, very sore eyes , burning upper face (but no rash) blood pressure thru roof, wobbly weak heavy legs, painful stiff sore neck , pins and needles, oddbuzziing in one leg, awful back of head headaches and light headedness

Bizzare as one thing improves, another symptom gets worse. I'm not bedbound, am ok walking quite long distances, heart rate ok , some days I might only get the leg stuff, other days just the daylong headache and neck pain. I am now gluten free, eating like a saint and very little sugar and lowish carb

Blood tests only found slightly low on vit D, pre diabetes, high cholesterol ( now on beta blockers and statins fairly low doses) thyroid test ok although slightly low on free T4 blood pressure now ok- saw a neurologist who didn't seem to think it was any of the real nasties - no falls, reflexes ok, pin prick tests fine, speech fine, swallowing fine, but I still feel totally terrible virtually every day. My H is sympathetic but without a diagnosis of anything 'as such' and the fact I don't look too bad- I think he struggles with the fact that 'no, I don't want to go on long walks as I will get muscle tremors when I sit down' and 'no - I am not quiet because he's pissed me off- I'm quiet because I feel lousy' . I really feel for you all ladies. It's shit

Poor DH - I hope he recovers quickly, farming accidents are terrifying. You starting LDN and getting some relief came at exactly the right time.

Oh heavens yes. Long term serious heart condition that restricts activities and travel. Adjusted to it, made my peace.
Then sudden occurrence of a different heart condition in 2020 and had to have urgent open heart surgery. Led by to retirement due to I’ll health and a diagnosis of heart failure. Activities even more restricted plus fatigué etc.
Diagnosed with breast cancer last Autumn. Urgent surgery. Now facing more surgery due to findings.
I am now even more depressed, anxious and hopeless. I’m not old but feel 80 and thoroughly fed up with it all.

A couple of things stand out here, I'm no expert but 20 years of ill health does inform one.

For the neurological issues look at B complex supplementation plus potentially B12 injections if you can.

I'm personally not unduly worried about raised cholesterol because it's common post Covid as drawn into the bloodstream for arterial repair.

New science also dismisses the blanket high cholesterol concerns and its more about the difference between the two readings so id look at that going forward as Statins do come with their own complications.

Rest, rest and more rest will help too.

Can you retrain to work from home online? Maybe AI might provide some opportunities?
Rubbish isn't it.

Gosh that's one thing after another Fran. Sympathies.

Thanks! @NeverDropYourMooncup

I'm so exhausted that even sending two short emails a day is an achievement!

Currently looking into a volunteering opportunity for 1-2 hours a week to see if I can commit to that and gain some skills.

I've looked into every option possible. I want to work. But yes, it's rubbish.