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 does depend upon what the illness is and if there are effective treatments and therapies for it out there.

I only really realised just how restricted I was outside acute flares (which completely screwed up my life) once I started on a medication which has massively improved my symptoms - within six months of starting it, I opened my eyes one morning and lay there wondering what was weird, debating whether I should wake DP up because something was different.

Then it came to me. There was no pain. I'd woken up and, for the first morning since I could remember, nothing hurt.

I used to go into things at breakneck speed and burn myself out/get injured because I was desperately trying to fit everything in, just in case the following morning saw me back in pain, unable to move/my skin red raw and burning from the inside out and it never got better again (when I wasn't thinking 'Well, I'm in pain either way, so I might as well do it and have the satisfaction of having done something for a change').

However, since having this release from the constant pain, exhaustion and other symptoms, I've been able to temper my instinctive reactions and actually enjoy just being active. It does make me sad to realise that being in pain since I was a child has cost me so much - if I had felt this good at 8/10/17/28/35 or 40, what could I have achieved? - but it also makes me extremely grateful for this period, however long or short it may be and whether the medication shortens my lifespan as much as it possibly could.

I hope that some of the posters on this thread are in a position where there are newer treatments that can give them relief or other things that can help them as they are now. Because yes, it's shit and I absolutely understand the 'what if this is as good as it will ever get?' question. I'd love to be able to say 'No, it isn't all downhill', but I can't. It wasn't for me and I will always be grateful that it was finally proven to me that it wasn't. It might not be for you, I hope it's not and that you all find relief in whatever form it might take.

It takes so much. Mentally and emotionally.
I feel so much older than late thirties. Hair is thinning badly, look bloated a lot and pale and tired. Feel like an old lady.
Nobody really gets it.

I feel like I have aged 30 years in the last 10, Fibromyalgia, ME/CFS, Underactive Thyroid, Autism, & B12 deficiency have all taken a toll on my body. I spend 16 hours a day in bed, have so many symptoms from my Fibromyalgia & ME/CFS, IBS, aches & pains, memory problems, fatigue, my B12 Deficiency has caused nerve damage in my feet & legs, I can hardly walk, have dry eyes, sores around my mouth, have lost nearly all my teeth. I dread being diagnosed with something else.

I feel like this. I have been recently diagnosed with myositis and it’s really hard when you look relatively normal on the outside but you know inside you’re not. It’s hard to explain to people without sounding like a mood killer, Debbie Downer so sometimes it’s easier to say “I’m fine” when I’m not.

I feel sad about the future and all the things that I planned that will probably never happen. I feel like I will be watching other people live their lives from the sidelines as I just waste away. I’m trying to be optimistic but it is hard.

Me too. This is the wrong time to write a post but thanks, all, for your comments! Reading and sympathising.

@SamSaid I’m so sorry to read this. If you have any questions about Dignitas in Switzerland or need any links, please let me know. I don’t believe that anyone who is suffering should be forced to stay earth-side a minute longer than they want to, myself included.

I can’t tell you how much I feel for all of you. This is exactly what the last five years of my life felt like - a very, VERY fast decline, like going down some kind of horrible funhouse slide. And when my doctor told me my illness is now actually life-limiting, I was SO angry and so relieved and so… except. I don’t feel like anything’s really happening except the same thing that was happening before. I’m still declining. It hurts more and more. I’m beginning to wonder if he meant, as I thought, that my veins just wouldn’t survive more than five years and that was that, or that I wouldn’t survive more than five years because even if my body did, the pain would eat my mind or the lack of mobility would kill my desire to keep living. I mean, I took him to mean, you’re going to die and there’s fuck all you can do about it. I see him on 19 April and we’ll be having a long conversation on what he envisions killing me. I feel so stupid for just blindly accepting what he said before but my tests were horrible, I was in a ton of pain, and it seemed perfectly logical. The more and more I think, the more I’m not so sure. I don’t want to be sick forever. But if I’m dying, I want to be sure.

Does everyone else feel confident that they’ll keep living for several years or decades even, despite the strain their conditions are putting on their body?

I mean, I completely understand how you feel, @Nat6999 and @SergeiL . They’ve just found yet ANOTHER thing wrong with me, I’m too sick for any surgeries anyway, so what’s the point even.

@5YearsLeft I don't know what to say to you. I mean you sound like you have accepted whatever outcome you have and write so graciously.
I was reading the thread as my DH has a chronic condition and just recently I have been wondering how we will reach older age, and if this is it from now on, not really sleeping at the moment as feel very angry with the situation, whilst not young we are in our 40's and I see older people enjoying good health and feel a bit envious.

Not sure I can offer you any help other than I hope you get all the answers you need to make the best decision to you. Do you have family support?

Lots of hugs to everyone suffering on here it really is an invisible situation for many of you.

@5YearsLeft I’d ask for second opinion so that you get a clearer answer on what runs scales are. I’m sorry it’s crap.
In answer to your question me I’ll have normal life span unless one condition deteriorated in an unusual way. Function is likely to get worse and stable MH but I worry about that. I know I’m lucky in many ways but I’d love to just have a body that has an occasional headache or cold…

@Battlecat98 I’m so sorry about your DH, and I can completely understand that anger. It’s so difficult, because it feels like the illness isn’t just stealing a current life, but also a future life you’d envisioned as well. I’ve always thought the best way to handle it (the illness, living with the illness, trying to plan a future life that now has the illness in it) is to realize that you’re allowed to grieve. You’re losing something. Grief is absolutely the most natural emotion. And anger is very much part of grief. Fortunately, your heart healing can be part of grief as well. If you need to be angry, be angry. I would say just don’t stay angry; there is still a life to be lived, even if it’s not the one you hoped for.

And yes, you’re absolutely right. I just need to get the best answers to make the best decision I can. I have some really good online support, and long distance friends, but unfortunately, not much real-life emotional support and no family (raised by grandparents so even though I’m not yet 40, I’ve already lost my “parents”).

@CPandme You’re absolutely right. I’ll be seeing the same doctor but also his boss on the 19th (it’s a hospital department) and they’ll do a new battery of tests, so I’ll make it clear that I need a much less fuzzy answer that I can hold with me on both the bad days AND the good days (admittedly they might not seem good to others, but hey, they’re good to me). And I understand exactly what you mean - the frustration that you’re dealing with this loss of your complete function when you wish you could just have a headache for a few hours and then its gone, or a stomach ache that goes away over night, or a normal cold that doesn’t make you feel like you got hit by an HGV. Sometimes it just hurts, and you wish you could be normal instead.

I’ve 51 and have got a degenerative neurological condition, sometimes I can name it and other times I can’t. I have a very supportive family and friends but in reality none of them have a clue what it’s like. I don’t think too far ahead which is probably why the post about the type of grandma upset me so much. The vast majority of the time I am ok with everything, 7 years diagnosed and I’ve pretty much come to terms with it but every now and again I have a good cry.

My best friend in her early 40s has a life limiting condition. She has had this condition since her late teens. I try to understand and support as best I can, but I know it can never be enough.

I watch her manage her pain, her life, her sleep, her diet, her energy, her medication, her research into what else she can do. Everything has to be managed so that she can leave the house for a couple of hours every few days. I hear her overwhelming frustration with her doctor, who doesn't seem to listen to what's she's observed happening in her body, doesn't want to offer her the medications she's found have helped fellow sufferers and constantly dismisses her.

She doesn't have the energy to change doctor. She doesn't have the energy to apply for PiP either, as it's a yearly application and the extra money isn't worth the energy she'll regularly expend on the form and assessments. The assessment I attended with her, the write up was talking about someone else...even had the gall to say she was able to attend alone when I was there escorting her in.

And because the sufferers of this condition don't have any energy, there is very little campaigning for research, as no one makes any noise. Everyone suffers in silence.

Add in the life trauma that she has had to learn how to mentally manage and the excess of grief she's had in the last 5 years, I am in absolute awe of her.

Sending many hugs to all of you having to endure 24/7 pain. I can't imagine what your day looks like.

I identify with you a lot, OP. I’ve had a chronic illness who whole adult life so was used to making adjustments and not being able to keep up with friends, but 3 years ago it suddenly ramped up enormously (I think Covid did it) and since the. I’ve got worse and worse and my life has become very small. Fortunately I like my own company and a quiet life anyway but I’ve gone from, say, being able to spend a day at home doing quiet things - renovating a chest of drawers, having a baking day, sewing, things like that, to possibly being able to do the washing up, hoover a couple of rooms and that’s all I can manage.

I used to go running 3-4 times per week. I was good at it and I enjoyed it. It did affect my condition but I knew how to compensate for it. Now…well, no. Occasionally the temptation gets too much and I put on my running clothes and let myself do a short run - 5k or similar. The first 5 minutes are agony but after that the endorphins kill the pain and I fly down the roads like I used to feeling like myself for the first time in months. I feel ok for 2 hours afterwards but then I crash for days and can barely get up.

Not really sure where I’m going with this but basically I understand. A lot of life is spent lying on bed, or just sitting unable to do anything. My brain isn’t as quick and can’t catch hold of things I’m trying to think, my bones and joints ache so much. I’ve always got a headache or diarrhoea or my skin is sore and ugly or my chest hurts and I’ve got palpitations. There is no ease to life any more.

Ugh, I feel this so much. I often have thoughts like this then feel like a mean bastard for even thinking it. My lovely colleague discovered she had breast cancer in the same month that I (FINALLY) got my most recent chronic illness diagnosis due to a flare that went on for about a year. We were both off work sick for about 5 months. She had a small op to remove the cancer and a few lymph nodes then a week of radiotherapy - no chemo. We messaged each other quite a lot and to quote her: “I feel absolutely fine, just a bit sore from the op”. Everyone at work rallied round for her - flowers, meals made and dropped off, fundraising for a little holiday for her after her treatment. And it’s not that I think they shouldn’t have done that, or that I think she didn’t deserve it and it’s not that I think they should have done that for me…but a bit of acknowledgment that I am very unwell, feeling awful every single day and won’t get better would have been appreciated.

Yes to all of this. It sucks.

I look very fit. Which makes it worse. 46.

I get the cancer thing. I feel more able to say that since a friend made the analogy with her husband being diagnosed bi polar but also being very abusive. No one could know. Whereas her friend who's husband had cancer had a million dinners dropped off.

After a 3rd covid infection my heart is constantly fluttering. It also keeps racing when I catch a bug. I'm used to the fluttering happening a bit my whole life, but with some other symptoms on top I'm a bit concerned but don't want to have to traipse to the Gp again.

Friends are ramping up their careers and I'm really physically struggling on 2 days. At least the Gp has given me alllll the hrt. Which could still be kicking in.

Yes. I feel like this atm. I am in pain. I've cried twice in the last month. I feel really down and sad and resentful about it.

The resentment is v hard.

So hard reading all these messages, but not as hard as it will have been for you all to write them.

Have had a chronic pain condition for about 7 years, nerve damage related, and will always have to be medicated, will always be in pain, and at times my life has felt so small it was barely worth living. Have had additional stuff on top like multiple disc prolapses (unrelated according to docs) and an undiagnosed autoimmune issue (already diagnosed with one but they also think I have another).

But - and I am really cognisant that this will not be the case for many on this thread, so please don’t think I am dismissing your stories, far from it - there have been ups as well as downs. At times I have been in so much pain that had I not got a child I would have killed myself. Not in an idle thinking about it way but in an every day for weeks upon end way. But with getting meds balanced, some expensive 121 support, I am currently as good as I have been for 7 years. I rode a bike yesterday for the first time in years (electric so not really quite as impressive, but I wouldn’t have even been able to balance before). I am still in pain every day - back in bed as we speak, but today like yesterday might be a good day. Because at the moment I can have both and that feels like a victory. And I only write all this out because I’m my darkest days I could see no way out except death, but I am so glad I clung on by my fingernails, and am so grateful to my child for being my hope.

I feel for every one of you, not least for the loneliness of it all. The fact it is invisible to all but those you live with. The sheer mental load it takes. And I really hope that some of you will have a ‘good’ day soon - whatever that looks like for you.

I have chronic illnesses and just feel like it worsens every single day. It's one thing after another and I'm getting so sick of it.

I am so sorry. You are not mean at all. The contrast must have felt horribly personal and unfair.

I am so so pleased for you that you’re in a good place at the moment. And from a selfish point of view, this was the positivity that I needed to see.

I feel like you do and I am so fed up of people saying at least I look well when I am unable to read, do any crafts I used to do, walk or see or write properly

Thank you. I really do feel like the worst kind of ME ME ME arsehole for thinking it.

Not at all. I think it's not that we necessarily want that fuss for ourselves, or resent the other person getting it, it's more what it says about how the world views our respective conditions.

Being desperately ill but feeling invisible and like people think your suffering is somehow "lesser" than someone else's really rubs salt into the wound

That must be really really hard.

@sweetsakura it is and I thank you for your understanding x