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?

I suffer from a chronic illness and really am struggling at the moment. It’s so isolating and lonely even when there are people there for you - as they don’t understand how much you’re struggling. I have constant pain that is so debilitating and exhausting and it just feels like there is no way out. I used to have hope in the fact that maybe one day I will get better and will live my life the way that I want to. Yet now, I just ‘cope’ just to be able to get through each day. I want to live and not just survive.

Yup. I worry it I feel like this now, then how bad will I be when I’m 60?! Especially since I am knackered working and with DC. No time to look after myself to try and aloe the demise down.

I agree with you. I'm in pain most days. Struggle to sleep as my bones physically ache 😔

Yes I’m really struggling. I hate waking up in the morning and being in so much pain before I even get out of bed. I keep researching for things that might help but so far nothing is making much difference. I’ll keep trying though.

I have multiple, born with some, collected others. Depending in what's happening round me and where i am physically and mentally with occupying hobbies etc, sometimes I cope better than at other times. I did so much grieving years ago when I finally got so sick i had to address things. And then kept riding a roller coaster of uncertainty, new symptoms and more things I could no longer do. Now, I'm kind of a mix of come to terms with it plus total throw the script in the air and fuck it.

Yep. I feel the same. I managed to meet my mum, Dsis and DNiece for a cuppa/park trip and ran about 5 metres after my niece. I could hardly catch my breath.

I know it’s deconditioning from my ailments and it makes me feel so rough and anxious. But I can’t do anything about it.

I’m 47 and I’m bored and fed up of just existing. I don’t know if anyone else is the same buy my brain still acts like my body is capable at times, yet my body is like ‘feck that’!

I agree Op.somewhat
I obviously struggle with OestoAthritis recently diagnosed to add to my Rumertoid Athritis prognosis a few years ago
.it's real Shit

I had a steriod knee injection hasn't worked that well on myself, other some people it does,

I suppose its hardly suspring I can't straight me knee properly it's buggered until knee op

Can't come sooner

I feel the same and add into it the fact my DC's dad died so they are both fairly hyper vigilant around my health, it's a lot

Yes.

I have multiple chronic illnesses and neuropathy. I've had to stop my medication as my youngest now needs insulin shots and I need a clear head to do them.
The pain is horrific, I couldn't even wear a T-shirt yesterday and it was causing me to want to rip my arm off.
It really does go downhill sadly.

I nearly posted a thread like this a few days ago.
I've not got a diagnosis yet. Had loads of tests/ investigations but none have shown anything. Consultant has started me on a new medication as a 'test' which is helping a bit. It's been going on 4 years and amazingly she's only taking me seriously now. I've just started flexi retirement (mid 50s) so hoping less stress and fewer night shifts will help.

I have a progressive, chronic condition and am getting worse and worse. Been feeling really low about it. Whereas usually I cope well and just crack on. Not sure what has triggered this despair but sounds like we are all feeling it.

Mines been more down, down, down, up for a bit, down, down, down, down again. I was really really sick at 20, bed bound, had to rest after walking the 10 steps to the toilet before I could walk back to my bed. It took a long time, but I came back from it to some extent got married had kids.

I've been in pain every single moment off the last 22 years. I even dream about pain. The last 7 years have been all downhill. Things are really really bad at the moment for lots of reasons. I'm in agony every single moment, my brain can't think straight from the pain and exhaustion and I keep pushing through too much, I'm terrified I'll push to far and never recover but I don't know what else to do. Stbxh turned out to be emotionally abusive and scary angry, and made me feel absolutely worthless, which I still do...our DC have SEN and one is struggling with mental health and self harming and there's just me. We're still under one roof till everything is sorted. I just want to never see his face and have a little peace in my life. I scared if things keep getting worse.

Yes I am feeling really down today. Two bouts of COVID this year have made me much worse. I am mainly bedbound. I can sit up for a few hours a day. The doctors are trying various new meds but the side effects (nausea, hairloss, insomnia etc are debilitating too)

I used to run to the swimming pool,.swim a mile and run home! I used to do watersports all weekend and then a full week in the office .

Now my children just accept that their mother is mainly horizontal. And they are good about it but it breaks my heart.

And I dont know if it's because it's a rare condition that people don't understand, or what, but I just feel like outside my little family noone is interested or cares.

I feel like some conditions like cancer lead to huge outpourings of sympathy and others people just don't want to know how much your life has changed. Maybe I am being unfair, but thats how it feels.

@SweetSakura thats completely it. I feel like a shit in that I know one day a family member will get cancer and everyone will rally round with childcare and food and meals and love. It will obviously be shit, but I faced a life ending illness and surgery and actually asked for help and no one came. No one was updated on what was happening to me despite people saying they did so I thought no one gave a shit about me. I was right. We now live in our little family bubble knowing we are on our own. Despite how much we did and do for others.

This is so sad. Agree that some illnesses are given less priority than others. It must be very hard.

I'm so sorry . It's horribly isolating isn't it.

I felt awful complaining about this but had a feeling I wouldn't be the only one feeling the contrast.

It feels like people have an almost visceral reaction to a cancer diagnosis and the level of understanding and outpouring of support is just completely different to that for other -.equally life limiting /debilitating etc etc - conditions

I shared about my diagnosis on a closed Facebook group for friends while I was still processing it (and was very ill). I was shocked and looking for support. The same day another friend then shared in the group that she had had pre cancerous changes and needed the loop biopsy treatment. I've actually had that myself so i know it's not fun but it's also pretty short lived. The outpouring of support for her "cancer" was such a marked contrast to the couple of comments for me.

And my husband and children are amazing, but it feels like noone outside our home knows or cares what we are coping with.

@SamSaid Thats a roller coaster of a week. It's a strangely fraudulent feeling looking normal to the outside world while battling physical symptoms.

That's good advice about therapy

Same here, I've started avoiding the doctors because they keep on finding something else wrong with me. I've been playing a game of cat & mouse with them as it's time for my annual health check.

I have a couple of conditions that affect my ability to do things and I am worried about what might happen as I get worse. My DH has a degenerative neurological condition and admitted to me he is very scared of the future. It's crap.

I have cerebral palsy and am worried about the future. My body is already suffering.

medical professionals including doctors, nurses and physios are taught that it is non progressive. Yes it’s true that the brain problem has not changed since birth but lots don’t recognise that using my body in a particular way, walking badly, overusing one arm will age it quicker.

Me too, I have severe heart failure after contracting myocarditis 4 years ago, my prognosis was 3-5 years. I’m waiting for an urgent referral back to cardiology because I’m steadily deteriorating but heard nothing after 9 weeks- chasing it up got me nowhere and the doctors strikes are exacerbating it all.
Pretty resigned to what will happen; reversing the downward trend won’t happen.

@Nat6999 I am exactly the same. They are threatening to stop my medication but I dodging a medication review because I don’t want any more symptoms to deal with.

Not symptoms but diagnoses.

Sending love to all those struggling and worrying, your stories have all stayed with me today.