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?

It's baby steps isn't it Carousel.

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.

That's interesting @stayathomegardener I have read a bit about the new thinking on cholesterol but don't really understand it. Do you have any tips for who to look up who explains it?

Are the two readings you refer to HDL, LDL or triglycerides?

The LDN treatment sounds really promising for people, I hope it brings relief.

@stayathomegardener Ive totally scaled back on the statins as they made my wobbly legs worse, and my number remained steady at 5.3 - down from 8.3 -now take 1/2 one every other day and im only taking half my beta blocker too and my BP has stayed stable. Im waiting on an MRI and if it doesn't turn up by June im just going to have to fork out if only to eliminate some things - I did go to an osteopath and he is fairly sure I've got disc/nerve issues in my neck area which as he says can easily cause all these other issues - he thinks it's 2 separate things - some long covid nerve inflammation mixed with cervical neck issues and that covid/vaccine (who knows which) triggered neck arthritis type stuff. I would be suprised if my B12 was out as my active B 12 on recent blood test (February) was high and I take multi vits with B stuff daily (along with magnesium and fish oils) - strangely my ferretin levels are at the very high end of normal too - I'm actually fed up now of knowing so much about this kind of stuff. I would rather them say something like 'you've got Lupus or Sjorens ' or something- at least there's specific does and donts and stuff to take.

Yes, absolutely. It's finding what is possible without dramatically worsening health.

@stayathomegardener on the positive side (if there is one) I've got great nails (I never have nails) and skin with all these supplements- just don't feel like going anywhere to show them off

This might help from Dr Myhill

Thank you @stayathomegardener I'll do some reading.

It breaks my heart to read all of this, as well as terrifies me. My life changed dramatically when I caught covid in April 2020, I was so ill with fatigue, debilitating pain, high heart rate, myocarditis, for almost two years. Tried every supplement, some medication - amitriptyline was the only thing to touch the pain- and all the pacing, clung on to my job. It is gradually all getting so much better. I pinch myself when I have a run of good days and can manage lots of activity, if I catch a bug and crash I feel such fear. I had thoughts about not wanting to live as it wasn't a life worth living, antidepressants helped at that point and I'm still on them.
My biggest fear now is absolutely 100% having ME, a chronic fatigue or pain where I have no energy and constant pain that sends me back to bed full time- not cancer. I could cope with cancer, people would believe and support me. I had so little support from some friends it was devastating, my husband is my saviour. I can't even talk about it coherently.
Just want to say I wish everyone here some relief, and understanding from people you love

Well that's very interesting Crikey.

I've had a recent MRI and the neurologist's opinion is it's partly post Covid nervous system disorder (hence the B complex support)

I've also TMJ and neck compression issues, which the cranial osteopath says this is post viral (Covid) fascia locking up.

I didn't even know fascia existed until recently, it was described as like the white fibrous pith under the skin of a satsuma running all round and into the middle round each segment too. Anyway this is a good group of Facebook for self massage of the offending muscles.

My ferritin is also high 400+ but that's usually inflammation, be interesting to see if LDN is calming that.

I can appreciate that!
My daughter had ME from 13 post glandular fever and it was so hard mentally she felt like she lost everything.

Covid has changed peoples perception of ME/CFS to a degree which is a good thing.

But yes I'm agreeing in general its such a misunderstood condition.

@Crikeyalmighty maybe try the waiting list checker re your anticipated mri scan.

@stayathomegardener it was only when I actually joined the long covid support forum that I realised so many of us had such similar issues- young and old, fit as a fiddle and not so fit- seems to divide into those who have mainly heart and breathing stuff and those who have mainly neuro and skeletal stuff - it's like it's given many of us fibromyalgia or ME mixed in with arthritis type stuff just for good measure - and oh MS type twitches/tremors too. Others I know have stuff way worse than me- but after8 months it does feel a bit never ending . I'm normally quite a cheery positive person and this has floored me to be honest- I'm lucky we work for ourselves as a business - I would have been fired otherwise because it's impossible to give 100% - 40% maybe on a good day .

@stayathomegardener I've been way over 6 weeks- Mm - will call doctors and check

Sorry you should be able to find the wait list time for your area on that checking link. It's probably way over that estimate now but at least you will know.

I waited 7 weeks on BUPA last summer.

Self employed here too.

@Persiana I totally get the elation when you have a run of good days- I had2 days recently where I realised I hadn't taken any painkillers and felt ok apart from a weak right leg- I could have kissed the ground- I cleaned the house, cooked from scratch and felt 80% normal

Mine started from flu many years ago. It doesn't seem to matter what the virus is, it's the effect it has on the system.

I agree, mine was from the flu jab 20 years ago.

To me long covid is ME/CFS with additional lung and heart complications 🥲
I did recover to 90% last time though even if it did take years.

Yes I feel that Long Covid and M/e/cfs are pretty much the same thing.

It's great you recovered to such an extent. I initially did after two years but unfortunately my life circumstances turned extremely physically and emotionally stressful and my illness returned much worse. That was a while ago and I can't see myself recovering fully as my tolerance of any sort of exertion is so low, but I have seen small improvements over the last few years as well as bad patches, so who knows.

I was completely bed bound last summer for 7 months following repeat covid and an extremely stressful emotional period.

Saw an amazing 81 year old Naturopath for manual Lymphatic drainage which started my recovery again so keep hopeful, he's about 2 hours from me in Ludlow if thats of of any use?

@stayathomegardener several people mentioned that lymphatic drainage helped and several have had reasonably good results with accupuncture too. Hugs for all on here- I will never ever underestimate chronic illness or autoimmune stuff again and how debilitating it is. I was previously in the camp that I thought some people were 'laying it on a bit thick' because they wanted to claim - I feel ashamed that I even thought that way - you wouldn't wish this shit on your worst enemy

I have post herpectic neuralgia (nerve pain from shingles) first it was on my back and side, then arm and shoulder, then most recently my face, all on the same side.

It's all joined in with the other pain from adhesions (lots of bowel surgeries) so I'm on painkillers for this, pregabalin and codeine / paracetamol.

When I take them at once it does help a bit with the pain but still have the ear pain and tinnitus going on and feel quite drowsy and tired from all the tablets (also on fluoxetine)

I thought things were going Ok until I got this shingles on the face episode which was horrible and have a feeling it will stay (the pain)

Can anyone tried an app called Curable? I am going to try this to try and help with the pain.

Also what pain meds do you find the best? Thanks for any help

Honestly I know how you feel. The thing is depending on the type of cancer, it could be treatable, many cancers are caught so early that it's simple, or the cancer would have been so slow growing they wouldn't have been harmed from it. It gets so much attention and funding, but other things which are life long don't.

It's hard to be a grown up and not feel competitive about it.

Well I've been ill and disabled a long time, but in the last year or so I've developed multiple autoimmune diseases that all affect my hormones, weight, throat. Now the majority of people with this very common issue could get medication or surgery then medication. But guess which lucky person is allergic to all of the medications?

Potentially any of these disorders could kill me without treatment, and at the moment fingers crossed that the fact I've got them all rather than just one will stop that from happening. But even after being seriously ill all my life, I've never felt as bad as I have done recently. Everything I've worked for, fought for, everything I've enjoyed is being stripped away, all the while smarmy advice on pacing yourself, and staying positive is what you get.

But do they have any advice on how to stay positive and keep moving when moving makes you physically pass out? Or how to stay active when your resting heart rate is 150?

Things I was passionate about, I can't do any more, my house is a dump because people keep on bringing me things they don't want that I don't have the energy to get rid of, and honestly just making sure I was once a week is a chore.

I work, I sleep, I normally argue with people when I'm bored on the daily mail comments section, and I keep my diagnosis to myself, because people who had it, got the treatment and are now fine just assume that I can do the same.

Either that or someone touting some dodgy MLM wants to convince me that anal prayer beads cured them of exactly the same thing. Thank god for morphine is all I'm saying and working in bed.