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

132 replies

Amidoingitcorrectly · 07/04/2023 21:05

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?

OP posts:

SweetSakura · 09/05/2023 20:30

I feel for you..I have just discovered the reason I was getting more and more unwell is because I have developed Cushings as result of taking heavy doses of steroids to treat my automimmune condition

stayathomegardener · 09/05/2023 23:13

Orangesandlemons77 · 09/05/2023 19:38

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

I use both the Curable app and Yoga Nidra to reduce pain. Very effective.

Orangesandlemons77 · 10/05/2023 09:08

Thanks stayathomegardener

Antisocialfluffmonster · 10/05/2023 14:06

Amidoingitcorrectly · 08/05/2023 16:02

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

I have really thought about this, but I dislocate things regularly, and the idea that I might do something and have zero options for pain relief if I needed hospital just terrifies me.

Crikeyalmighty · 10/05/2023 14:19

@Antisocialfluffmonster I understand your anxiety on that- I'm on beta blockers and you aren't meant to take NSAIDs at all - which is a right pain in the butt when on some things they work far better than paracetamol

porridgeisbae · 10/05/2023 14:30

I have thought that way in the past but try to keep the faith @Amidoingitcorrectly . In my case, I had a few bad years and I thought it might stay that bad for life, then they found the best meds for my bipolar and it meant I went from barely being able to leave the house (partly due to a med that was actually giving me high anxiety as a side effect) to having many years now of mostly living a happy life.

Try not to despair, and keep going back to your doctor. x

Antisocialfluffmonster · 10/05/2023 18:53

Crikeyalmighty · 10/05/2023 14:19

That is a pain. I think it’s something people need to be aware of thought that in an emergency on ldn they wouldn’t get effective pain relief straight away. Given how often I’m in that position it’s a no go for me

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