Chronically ill and sad

[Chronicallyill6]

This isn't an AIBU. It should be in health. I've posted shamelessly for traffic. I'm ill. I've been ill since I was small and there's not lots doctors can do. It's physical and serious. It's very debilitating, I can't go into details. I'm now in my mid-40s and I had maybe 10 years where medication worked, then it stopped. I can't have children, I'm often housebound, I loved travelling and would go to far-flung places on my own and do brave things. I was always so clever and did really well, but now I go for jobs and get usurped by someone with much less qualifications. It's pointless - I couldn't go into an office anyway. I don't know why I do it. I was dumped by someone who realised how ill I was (I was well when I met him). I do work (they employed me before I got sick) but my responsibilities are being pulled away and I'm bossed about by people 15 years younger in an office, while I sit alone at home. They talk about their holidays and weddings and children and I'm so sad. I want a life. I feel like such a loser, just sad and ill and housebound. I've had therapy but the issue is I'm physically unwell - just a quirk of nature that happened before I was born. I'm not after sympathy. I'm after advice but please not therapy as I have a lot of hospital appointments already, and I need to be in the right frame of mind, and I don't have the energy for a dog.
Thank you.

I'm disabled following an accident ten years ago.

I now have other stuff on top and can no longer work.

It's really tough. I really wanted to keep working but it was just too much for me.

I try to be happy with small things. I've joined a choir. We're all pretty bad singers but our leader is really positive and I enjoy going.

I'm in a wheelchair most of the time.

I grew some tomatoes this year. Badly, but I enjoyed watching them grow.

I know you don't have the energy for your own dog, but just in case it's of interest to you I thought I would mention my friend in a similar situation loves animals but can't have a pet. So instead she has a few local people whose dogs have separation anxiety who go to hang out with her when their owners are at work or out for the day or whatever. She absolutely loves it. The owners walk the dogs before they drop them off, and she just enjoys the cuddles and lets them out for a wee in the garden as needed. She's made some good human friends that way and has a lovely bond with various dogs with none of the cost or responsibility. If she's having a bad day they just lie on her bed with her and are living their best doggy lives whilst she enjoys the company.

I'm sorry you're having an especially hard time just now.

I have MECFS. I got it after covid I think. So I've been coming to terms with it for around 3 or 4 years now.

Chronic illness sucks. One of the things that has helped me is my Facebook support group where people truly get it.

I also think acceptance is vital. It's not giving up but it's a kind of resigned peace where I accept my limitations and also try and know that my worst days are not going to be forever and I have better days too.

I'm wrestling with it right now though. I'm have a crash and I wanted to go visit my mum before going back to work next week. I may go anyway but it's a risk as I've been feeling just awful for days now. Both choices are shit.

I try and find joy in smaller things and try not to fight it all the time. I have made some jam recently from my own fruit tree, I've bought a new plant, I've got rid of some junk, I bought some new earrings.... Little things can really help and when it's really difficult... just have a good wallow and some mindless TV.

I did buy a book by a young writer who I like (I read her social media posts) Pippa Stacey. I've not got far with it yet but might be if interest

How to Do Life with a Chronic Illness: Reclaim Your Identity, Create Independence, and Find Your Way Forward https://amzn.eu/d/dPIbSts

I have audible. Another small joy. I like it better than TV.

I also have a chronic illness so i do understand.. but .... you have to take ownership of this.

You are clearly competent to work and maybe they're are taking away responsibilities to help you (reasonable adjustments?) If you aren't happy about that you must control and speak to HR

You sound rather depressed and I echo others. You should seek help. Your GP is your first stop
You can self-refer to counselling on the NHS

I think I am depressed, which isn't my typical state. I've always been more anxious! I just can't motivate myself to do the same small things, year after year, try the same medication, visit the same specialists (who I've no criticism of), when ultimately my life is at a standstill. I don't want to do it anymore. I want to jet off on a plane, quit my job, move to another country... but even a short walk is tricky. I feel trapped in my body.

I should say I've actually had a lot of therapy and some rather specialist (I'd prefer not to go into the condition) but I think I'm coming to the end of the road where I can be hopeful. And losing hope is a killer. But again, I'm not suicidal, just desperately sad.

I second this. Good therapy can be incredibly valuable in coming to terms with life changing disability and finding a new way forward. It certainly was for me.

@Chronicallyill6 have you read anything about radical acceptance?

I've been thinking since last night and I do think that was one of the things that changed my mindset. I hated it to start with, my wife listened to many, many rants about how stupid it is. Then something clicked.

I wouldn't say that I "accept" how I am now, I'm too stubborn for that. I have more developed a tolerance to be able to get along with it.

Hope that helps, I saw that you read a lot of academic papers so it could be a rabbit hole for you to explore and see if there's anything for you there.

This thread really resonates with me. I am not ill but have become disabled over the past two years. I have gone from fell running, mountain biking, hiking to just about being able to walk. I struggle so much with my new reality, especially as my husband and friendship group are so active and I feel left behind.

I've tried so hard to reach acceptance but I just...can't. I feel so angry. I self harm some days because of the rage inside me.

I completely understand how you feel, OP. The world seems so unjust and it's hard to feel separate from it. I also don't think therapy works (personally) and there isn't really a cure to this feeling or a solution. But acknowledging your sadness is important.

You sound just like me. I was so angry and upset and focused on getting back to hiking up big hills that I think I blocked out other options for trying to meet that need if that makes sense?

I totally agree that it's important to acknowledge your feelings and 'be' with them.

Disability and illness shakes your entire identity. There is a social pressure to be brave etc but actually sometimes what I need is to sit and wallow and rage about how shit it is. Because it is shit.

Maybe part of being OK sometimes is accepting that you don't have to be OK all of the time?

Not ignoring your self harm, I've been there with self harm / suicidal and there isn't anything that I can say. I've had so many damaging things said to me re. all of that, mostly by highly paid doctors. Take care of yourself the best that you can x

I can relate as well. I absolutely hate being disabled. I used to be so strong and fit. Now I have days where the walk from my bed to the bathroom and back is the most I can manage.

I'm not suicidal. But the irony that I'd have been put down by now if I was a pet animal doesn't escape me.

I do try to enjoy the little things and be grateful for what I can do. I force myself to do as much as I can. But it's hard. Going from being able to do sets and sets of push ups to not even being able to hold a hair straightener without being in pain just plain sucks.

I've got no advice unfortunately. But you're not alone xx

I can relate, I've become disabled. I have my son. But not much more adult company.

People seem so interested in when you will get better. Drs will not remove my cyst in spine cord as it will come back and presently 'safe'. But so much pain. Going out sends my back into spasms. People talk about going hiking again I wish they could understand the outcome of being disabled there is not always a reset, or treatment that leads to a cure.

Money on benefits is so low by the time I'm paid 2 days later no money left and that makes me very vulnerable going out. I never felt the same able it's incredibly scary when you legs shut down with hardly any notice. Wheelchairs don't fit in handbags just incase.

If you like reading would you consider reading Buddha in Your Mirror? (available from Amazon). I read this book many years ago when I was in a really tight spot. It really helped me

I think this is one of the most relevant threads for my situation that I’ve ever seen on MN. So much wisdom in everyone’s posts. Thank you for starting it, @Chronicallyill6

Thanks for responding, firstly. I understand the concept intellectually (although haven't read much on it). I just can't seem to practice it! But I think I need to.

I will - thank you.

That's where I was with it for months. I got why it should work, the nuts and bolts of it but it just meant nothing personally.

I don't know what to suggest other than continue playing with these ideas etc and see where they take you.

At the same time I was reading things about radical acceptance things I was reading zen things, Buddhism without beliefs, "I am that" ( can't remember author ) lots of things about body and mind connection / disconnection.

I read a lot of weird shit to get to here. Seems like maybe an approach you may like?

I really want to thank people for responding and offering advice. It's heartening to know I'm not alone. Some more information (although not drip feeding): my doctors aren't dismissive, but unfortunately not everything is curable. I do have friends. Some are more empathetic than others - but I think, equally, it's virtually impossible to imagine a life like mine unless you live it. I struggle, I think, with the drudge of it. When you have the flu you feel rotten but there's an end point. I suspect I feel depressed more latterly as symptoms have once again worsened, so it's another year without a holiday or anything fun. I will read your book suggestions. I will try and motivate myself for therapy. I will reflect on small moments of joy. I will try and be compassionate to myself. I might journal. To the person who cuts themselves - please, please don't.

@Chronicallyill6 i see you xxxx

I’ve had long Covid since 2020. Although improved, I grieve for the person I was. I absolutely understand.

Sorry, I’ve nothing really to add apart from I listen to audibles, live as healthy a life as I can and meditate.

One thing that’s really helped is having zoom chats with other friends in similar situations. One of us is often too poorly to physically meet, but a 30 minute zoom cheers us both up.

This might sound silly but I worked out my illness was functioning as a protective barrier. As a kid my mother was very abusive and as an adult when I planned to visit her my chronic fatigue would suddenly get tens times worse and I had to cancel.

Maybe start to pay attention to when your health dips and plateaus. It might help you unravel a mental component.

It doesn’t sound silly at all. Loads of stuff out there now about the brain/mind/body connection.

I used to hike a lot.

Now post-accident I can't walk far but I do do wild swimming.

I don't swim far if at all - sometimes I just dip - but it can be disabled friendly and you do get some of the "being in nature" hit.

I totally understand how you feel, @Chronicallyill6. I'm 45 and have had M.E since I was 14. I've had relapses and remissions, but the relapses have become more common as I've got older. I used to absolutely adore running in the remissions, I can't run at all now. To be honest, there's not much I can do now. I've recently been dismissed from my job on the grounds of medical capability. I grieve for the life I could've had. I have no children or partner. I feel like I'm living a shell of a life and it makes me so angry and sad. Since the relapses have gotten worse, I've developed type 2 diabetes and now can't even really enjoy the comfort foods I used to. Believe me when I say, I truly understand where you're coming from and how you feel. Sending love 💗 💐

It sounds like you’re losing hope for and grieving the life you thought you might have. Very tough. And you need others to share it with you.

You mentioned you can’t have children due to your condition - don’t know if it’s going to be relevant or not but Gateway Women is a great connection/support organisation for the childless not by choice and have a group specifically for women who are childless due to health conditions.

Hugs

If I can offer some advice - seek help from a therapist who is disabled themselves. I agree about Radical Acceptance / Radical Compassion but maybe hearing that message from someone with a disability will land better.