When your health and life means nothing

[grumpytubwumper]

It’s just a pity fest. Sorry

i have a chronic illness that affects every element of my life. Covid has fucked with my immune system so badly that the immunosuppressant medication for the chronic illness means I am constantly sick now where I managed ok before with maybe one or two infections a year. Now they’re back to back.

I’m recovering from four months of being unwell, more recently quite seriously so. I’m on horrible steroids, antibiotic after antibiotic and just feel like shit. I’m recovering from pneumonia. My PF is going back up, I’m not wheezing and and there’s no obvious or regular crackling in my lungs now but something doesn’t feel right. One lung feels obstructed. I’m not sure I can explain well, like there’s a flap or something in the way and it sometimes makes my breathing less… flowy. I thought it was just prolonged mucous but it seems to be dry. Coughing produces not much and moves nothing.

i had to stop my immunosuppressants medication due to the pneumonia and I can’t get hold of my rheumatologist to find out about restarting. I’m reluctant to start again without their approval in case this flappy obstructed feeling is prolonged infection but if it’s because of inflammation then restarting is absolutely the right thing to do. My GP says call the rheum. In four weeks the rheum helpline staff haven’t called me back to advise what to do. GP wont order chest xray but I don’t think an xray would show what needs looking at (deeper lung inflammation or damage via CT is what I ought to be getting) but with nobody actually listening to me or doing anything I feel like I’m just being left until I finally fuck off and die.

I’ve been such an advocate of the NHS (Scotland) but this past 2 years has been awful. Some departments have been amazing but the rheumatologists are absent, always short staffed and never deal with emergencies. The Gp refuses to deal with rheumatology issues (of which the lungs are likely to be part). My rheum has no emergency service and my nearest hospital which does hasn’t transferred me to their books in the two years since my own rheum referred me there.

i honestly don’t know what to do anymore. Imm not massively old. I had a life. I have children and a partner. I ought to be well enough to live a reasonable existence. Appropriate medical care and treatment would mean I could return to some kind of useful life as a mother and a worker. As it is I feel like a parasite on the nhs, someone they’d rather forget about until I die of one these infections or the chronic illness. I’m coming to realise my life isn’t as valuable as others and that my continued existence means nothing to anyone other than my kids. It makes me so bloody angry and helpless.

no money for private. Just fucked

Why can't your gp contact your consultant??

That's what they ought to be doing.

Solidarity and sympathy, op. That's all truly shit. I hope you turn the corner this year

I wish I knew. They tried the on call rheumatologist at the closer hospital but because I’m not registered there yet (2years waiting!) they said it had to be my own (same city different hospital) . The secretaries of my own rheum told my GP I had to call the helpline myself and I’ve done it twice a week for four weeks and they haven’t got back to me.

i didn’t realise how badly the system was broken until I didn’t fit neatly into their 6 month appointment system without additional needs.

I would push your gp to get fierce with them.
A strong letter and maybe a strong phone call.

In this situation I would (I did) look to refinancing for private treatment. Keep pushing your NHS things at the same time (don’t think of it as either/or)

Start with paying for an initial consultation (£250 ish) and that will probably lead to some diagnostic testing (I don’t know but budget £1000).

After that you will have much more of an idea of ongoing costs for treatment and can look to get a loan.

Also at this point - you may be able to transfer some of your private findings to NHS treatment.

Stay local to you and try to get who you see privately to be the same as the NHS consultant you would want to see. They will be more likely to ‘help’ you eg I saw a consultant privately and he helped me see him on the NHS. In the end I went privately with him because it was the difference between a three week wait and a 2.5 year wait on the NHS.

It’s so hard when you feel like crap but there is a way ahead.

I felt like this when I first had sarcoidosis,being on prednisone and methotrexate was awful, and between puffers and pills I felt I was always tied to a schedule.
I'm sorry you are dealing with this, and hopefully they get some answers for you soon!

Oh bless you. I really get how you feel.

When I've had a serious issue with my arthritis and needed steroids, it was literally impossible to get through to rheumatology. They have an emergency line that's open for a couple of hours a few days a week and it's constantly engaged. My GP ended up sending me to A&E just so someone could call the rheumatology department internally and let them know I was trying to contact them. Absolute waste of time and resources for everyone!

It really does feel like no one gives a shit.

I hope you’re managing well now @DaftyLass That was one of the first conditions I was checked for many many years ago. I’m sorry you have to deal with it.

Im sorry you’ve struggled too @DontGetYourTitsInATwist - it shouldn’t be this hard to get treatment or even just a response.

if I had the money or ability to refinance anything to go private @Cherryana I would but because my partner earns too much (less than uk average though!) I’m not entitled to any sickness benefits so have zero income myself. We literally do not have a few thousand spare and with two growing kids them being housed (rental) and fed is a priority. The reality is most people don’t have refinancing options.

I can’t know your particular situation but I do know the feeling of desperation after feeling so ill for so long.

I hope you find your own way through to health x

I hear you OP and I sound in a very similar position to you. I had infusions for my RA the back end of last year. Since then I have had endless serious infections and was finally admitted to hospital and put on antibiotic infusions and scanned.

I couldn't get a response from Rheumatology, via helpline or Consultants secretary. It transpires as a result of the infections (zero immune system), I need two operations (done at the same time), but they won't operate until I have seen Rheumatology. I now finally have an appointment with them at the end of April. The most input they have had is to say "don't take Methotrexate whilst you have the infections". No shit, I already knew that and stopped ages ago.

I'm on endless antibiotics, which seem to do bugger all.

Its all going very smoothly!

That sounds so familiar @HelpMeGetThrough I hate how we get put on hold for treatment of other things and ignored when other problems crop up because the rheumatologists that don’t seem to exist should just deal with everything now.

i was told I couldn’t get further investigations into a gastro problem (most likely due to the inflammatory disease I have) until I had a formal diagnosis because of the risks of immunosuppression. I’ve been waiting 13 years for a formal diagnosis or something close to it . Last gastro appointment wanted answers from my rheum in 2021 and I haven’t heard from them since so no more investigating that problem that could well help firm the diagnosis one way or another.

I can’t get a respiratory consultant either because my past X-rays look ok (no mention of inflammation in smaller arteries etc which is the problem and need more specialist scans) and I think I now have permanent lung damage which is affecting my quality of life and will continue to do so. Without a formal diagnosis and the proper treatment for it the damage will just continue to get worse.

My initial consultant disappeared pre covid and the hospital didn’t/couldn’t replace them. So we were all just left on hold and it has never recovered from there.

This deliberate underfunding and mismanagement of nhs resources has led to this but even in an insurance /private market I wouldn’t be covered because of pre-existing conditions.

my life is worth nothing.

No, you're right. It shouldn't. I also feel like my health isn't worth anyone's time.

I'm stuck on crappy benefits that are increasingly too little to live on. Nine times out of ten, I wake up feeling like absolute death. I've got even more joints affected in the last few months. It's just no way to live.