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?

Yes, absolutely. I keep hoping that I'll feel better physically but this may be as good as I'll ever feel. I do as much as I can and use meditation to help me accept my reality as it is now and not to feel guilty or bad at the things I can't do anymore. I try to find joy in all the little places in life and that helps too - I write down three of these every day and it also helps. And I know this isn't a Mumsnet favourite and I will probably get attacked for this, but cannabis products (not acquired in UK) help me a lot both physically and mentally.

@Goodyetalso - Try not to give yourself a hard time for how you feel about others... there is almost no one who can even conceptually realise how hard life can be when you have a chronic illness, they're not talked about often and most people simply don't understand. And it's ok to feel like that's unfair, because it is. Being kind to yourself is the part I found most difficult, but practicing telling yourself that you're doing the best you can in really challenging circumstances is really important (though nigh on impossible when you're in pain I know) - I really hope that you will get a good day soon

Does anyone else still have that blissful denial every morning where you lie in bed and despite the pain that you can already feel you mentally lost all the things that you need or want to do today, completely certain that you will manage to do all of them, hey within an hour of getting up you’re having to reduce and reduce your expectations until finally it turns out that you can only do one small thing on your list (badly)?

*list not lost

Yes my condition gets better with rest so, except on my worst days I can feel almost normal in the morning, and like you say I start to get optimistic about what I will manage. Then by the time I get dressed and showered I have to rest and recover and the reality of how limited my life is hits home.

My condition (myasthenia) isn't painful though, usually, unless I really horribly overdo it, it generally just causes weakness /numbness. My heart goes out to everyone dealing with chronic pain, it must feel utterly relentless.

I’ve just googled myasthenia because it’s not something I’ve come across and that sounds difficult to live with. Is your swallowing affected or mainly your eyes or body in general?

@Goodyetalso my whole body is affected. Mhy eyes have quite bad ptosis (eyelid droop) if I am unwell, and my swallow can get really bad as well which is scary (it feels like I am drowning in my sleep, or I choke on food and drink) . And I struggle to hold my head up as my neck muscles are weak. So it's a weird and frustrating condition.

I feel very lucky not to have the double vision that a lot of people have though, as I love to read. (And need to for work).

And I do feel lucky that it is largely pain free.

I have recurrent episodes of Shingles after surgery and now have post herpetic neuralgia, treated with pregabalin. I'm also on fluoxetine for depression. It's hard and people don't seem to understand.

The worst thing is when you get these comments as if you are bringing it on yourself- or making it worse- usually from MIL "Lying around thinking about it won't help" for example. When you are just shattered and resting.

I have a chronic condition and live with the constant pain / neuropathy / inoperable slipped discs it has caused. I’ve forgotten what it was like not to feel pain. And my life is so small now, the comment above about what you can achieve from your “to do” list shrinking really resonates. These days I have what I think of as a “busy” day that totally exhausts me, but to a “normal” person it would be about an hour’s everyday chores that they’d barely think twice about.

But in the interests of honesty and fairness, I cope better these days than in the first few years after my disc slipped. I really, really struggled mentally then and I was eventually referred to a pain psychologist which did help. I still have down days, I have fears for the future (my mortgage originally wasn’t due to be paid off until I’m 67 - my state retirement age - and I fear for my ability to work FT until then so I’m overpaying as much as I can afford; think I’ve got about a year in hand now) and days when I can do virtually nothing for the pain. But I have up days too: like a PP above I love running, and I’ve cautiously restarted C25K and am coping okay-ish at present. I’m lucky that I have an excellent supportive employer who mostly gets it, and also lucky that I can WFH with equipment supplied by said employer. I still don’t always get the “pacing” right but I’ve learned not to beat myself up too much for the “do nothing but survive” days.

So much sympathy and empathy to you all, and so much resonance in so many of these comments

And how one life limiting condition gets millions poured into research and drugs and another isn't even commonly known among medical staff. That's the unfair part.

Yes, you are absolutely right, that's the far more serious consequence of the disparity

I have arthritis and it's getting worse. I am 42 and sometimes wonder if I will be able to walk at all in the next few years. I am in constant pain and I really feel like no one understands how draining it is.

If I knew it would improve with time I'd be ok. But I know I will only get worse so it's very hard to feel positive.

Just posting here because it’s a bad day and I’m sick of hearing myself complain to my partner or my parents. I worked too many hours last week (long standing problem with my workplace re: my hours that I’m trying to sort out but it’s difficult). As a result I am in a horrible flare. I haven’t had a shift since Friday evening and am due back at work early tomorrow morning. I hoped that 3 days of rest would sort it out but after the most depressing Easter weekend ever doing absolutely nothing and only emerging from bed today to eat lunch and do some vague tidying for 20 minutes, I am flat on my back again feeling awful. I can’t stop working because I’m a single parent (separated from DC’s dad, don’t live with my current partner) and can’t pay my rent and bills if I stop work. I was off sick for a long time until a few months ago when I had to go back and if I go off sick again, I trigger a Stage 3 warning and could end up losing my job. I have no idea what to do.

I'm like you @Goodyetalso been in bed all weekend in the hope it will mean I am.well enough to work tomorrow. But I can barely walk downstairs to get a drink today. And it's so frustrating that even if I do manage to work there is no fun to counterbalance it.

And I have to work , not just for money but for my mental health and self esteem. But I just want to be well enough to spend even a bit of my weekend doing something.

I hope another night's sleep does the trick for you. It's horrible having the worry of losing your job through no fault of your own

I could have written this
I had such a rich life despite my conditions. 3 covidy menopausal years later and I'm mostly lying down when not working and parenting.
I feel nobody really gets it, recent sibling conversation mentioned 'playing the victim' , and so many similar things from people who've seen me at my worst.
I'm holding onto my job by the skin of my teeth, and thus our home.
I feel I can't reduce my life anymore than I already have.
Sending hugs and solidarity to all on this thread

What is the medication? In case it can help some of the multiple symptoms

Oh god yes, the weekends and evenings spent recovering, doing as little as possible in order to manage the days at work. Saying “oh not much, just had a quiet one, how about you?” when a colleague asks what you did at the weekend, which is code for “I lay in bed / on the sofa utterly exhausted and in constant pain”.

<written from my sofa where I’ve been all day, gathering strength for work tomorrow>

Cosentyx (Secukinumab). Have been through;

Oral steroids (prednisolone)
Ibuprofen (now allergic)
Naproxen (now allergic)
Cocodamol/Codydramol 30/500 (not a fan of them long term, so got off them again asap)
Amitriptyline (fucking ridiculous idea - went off my nut on the things)
Tramadol (took one, my head went whoosh and I spent 3 days on the floor feeling like I was going to fall off)
Cox-2 inhibitors (now allergic)
Hydroxychloroquine
Methotrexate
Leflunomide
Intra articular joint injections (probably my least favourite of the steroid family)
Intramuscular steroids - dexamethasone, methylprednisolone)
Assorted topical steroids (betamethasone, hydrocortisone)
Most of the emollient creams and lotions (despise Doublebase, finally settled on plain emollient)
Coal Tar derivatives (massively pissed off that Psoriderm has been withdrawn)
Humira (Secukinumab)

Couldn't have a couple of things due to pre existing allergies.

There's also been

Physio
Hydrotherapy
Assorted braces, boots, bandages, taping, cold compresses, meditation, being told that it was likely to all be in my head and had I considered I was imagining it (um, no, I don't think I'm imagining this - pulls sleeve up to show hand, fingers, elbow swollen up like balloons and covered in raw plaques/splits and clumps of hair and scalp falling out of my head), and a freebie celiac disease diagnosis thrown in for good measure to go along with the

Psoriatic Arthritis
Psoriasis
Multiple allergies
hEDS
POTS

But Cosentyx has been The One drug to Improve It All.

Thanks so much for sharing. I have a similar list, lots of overlaps but also many I've never heard of. We have similar conditions, sending empathy hugs!
I have never heard of Secukinumab or the other names you gave it.
I'm desperate and feel at rock bottom, single parenting two teens also with overlapping conditions plus also all of us neurodivergent so managing the everything plus all our extra needs plus pain fatigue and mobility issues takes me to some very dark places at times.
Especially holidays like now when I can't do right for doing wrong to please the kids, in all the hell of the pain and trying to be non challenging, non demanding, kind, compassionate, empathetic and entertaining whilst being disrespected and treated like a skivvy.
I have not covered myself in glory this long weekend and can't even look forward to them going back to school as they hate it and it brings up a whole nother world of pain I have to try and manage whilst working!
Sorry total merail just got home, tidying and sore after another day out of their choice disrupted by unreasonable demands.
I've had a gut full of the whole bloody thing.
I was desperate for children and I'm making such a shit job of it.
I hate being such a defective parent with such limitations.

I had no idea I'd become this unwell, was wrongly diagnosed most of my life and have deteriorated so much.
had I known I might never have made certain decisions such as being an empowered single parent deserting a unfulfilled marriage.

Anyway, I'm going to research this drug thank you and see if it offers any hope!

Bless you, its horrible isn't it to have nothing to share because if you share the truth it just makes people uncomfortable (or that's how I feel)
I've been using a LOT of my precious spoons to try and make my garden a beautiful and tranquil place (to the best of my abilities)
So that when we do have a nice day I can get out and have a coffee and chill in the sun without actually going anywhere and when I have enough energy I'll hopefully feel able to have gentle and understanding friends around to chill outside.
It's bloody hard work so slow but I do actually love gardening, physical work and outdoors work.
In a previous life it was my job, so very frustrating when I can't achieve what I'd like in the Same amount of time anymore but it gives me joy to see changes from baby steps.
I always pick bad when it comes to tradespeople and get ripped off a lot so it is good to find things that I can do to make it lovely, even if it's not my dream garden and even if what I can do is substandard!
Trying to do similar indoors but because I spend so much time laying on the sofa tired and in pain and depressed about the jobs around me that need doing, I feel less inclined to have people over in the house because I've spent so many miserable hours in there.

Doing the physical work also takes me out of that ruminative miserable headspace but the pacing is vital , I haven't quite found the balance yet 😅

I know it sounds terrible but I’ve found my people!
Took 10 years for the drs to take me seriously which has sadly left me with fibromyalgia along with my other 2 lovely conditions.

I really appreciate and acknowledge the lying in bed thinking what you’ll do and then as you start to move the list decreases so much.

Does anyone else have that thing where your brain thinks you’re fine for a few minutes so you get up and move towards doing it and suddenly your whole body remembers in one go and you have to sit down disheartened?

I was talking to a really lovely nurse the other day who actually seemed to understand and she asked if I remember what not being in pain is like and I can’t. It’s all just grades now. From the general ache all over to the hallucinatory kind.

And the loneliness of having no one actually know. And the glazed eyes when you talk about it.
And then when you realise that you no longer have anything to talk about anymore because this is all there is now.

Ah. I could go on forever

That was a bit off topic sorry. I haven’t spoken to anyone in real life about any of this as I worry about being enough of a burden already.

Mine is definitely progressing and I do wonder what it will be like in a year or 2 from now. Although my main worry is what new illness I will add as it seems to be going that way.

I find the keeping upbeat about it all can be hard. When all you want to do when someone says ‘how are you?’ Is answer with ‘buggered frankly’.

I got referred to a major Rheumatology centre to get onto the good stuff 🙂Had to try the DMARDs before going onto the biologics, but I wish they'd been able to go direct, as it would have saved a hell of a lot of time.

It boils down to my immune system either hating me or getting too over enthusiastic about things - I joke that it's probably got ADHD (like me, forgot that one) and it gets so bored that it decides 'I know - I'll attack her tendons/gut/skin/whatever today - she's had it too easy with just a few injuries from her EDS right now!).

My days used to be wondering what would hurt most/swell up/pop/snap/crack or jam after waking up feeling at best like I'd spent the last three hours (as I couldn't sleep more than that) in a cement mixer filled with broken bricks - and usually it changing at least 3-5 times in a day.

This long weekend, I've been to the gym twice (walked there and back), gone shopping twice (I hate too many people or getting trapped in a big supermarket, so keep it to minimal durations in smaller shops), got my eyebrows done and walked back from that, watched more TV than usual, slept 8 hours with 1-1.5 of those in proper deep sleep and will be going out with DP tomorrow morning.

It's a long way from the three months I spent mostly in bed with DP holding my cup of tea for me because I couldn't.

Please see your GP - anyone who has had Covid should not ignore any cardiac symptoms. There is growing research showing Covid can affect the cardiac and vascular systems as much as respiratory.

I have fibromyalgia, hyper mobility syndrome, ibs and several other diagnosed syndromes. I had Covid last year and really suffered for 6 weeks. Since then I have added Long-Covid and Asthma to my list of diagnoses, due to ongoing chest pain, breathlessness, repeat infections, increased fatigue, high resting heart rate, palpitations, higher blood pressure and pulsatile tinnitus...

...then 4 weeks ago I had a heart attack. I'm 35.

Definitely resonate with how many of you are feeling here

Don't apologise! I cried when I read your post. It's refreshing to be able to talk honestly about it.
My social world has become tiny for lots of reasons but mainly because I have an unbelievable amount of very ableist 'friends'.
I have been so hurt and harmed by people's opinions and suggestions to make it better and when it started beibg directed towards my kids too i started to shut people out but sadly have not been able to sustain friendships with the decent people either, usually because either i or they are knackered!
I feel like such a non person and embarrassed and helpless but I would never think that about another person going through what I am, its ridiculous!