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.

what a difficult situation OP. I think you need to realise that your life is different to others and always will be. So for you, living your best life is going to be different and you just can’t compare. But that concept also works both ways. You are special in that you have an experience others don’t have. You could start a blog or instagram to inspire and give hope to other chronically ill people? Give them a supportive ear if they need? You could enjoy things that you can, for example good books, art, film. It sounds to me like you feel that you lack agency or purpose. I would encourage you to take ownership of your situation and live the best life you can within your constraints. It’s not easy but I think you can get enjoyment and fulfilment from life, even with your challenges

Therapy is useless, I had a massive breakdown while coming to terms with the fact that I am and will stay disabled.

You're not a loser, there will be things that you enjoy and do well. You need to allow yourself to enjoy them and then look at ways that you can share these things.

I don't actually know how this happens but it can. I still have bad days but I am happy now.

I read a lot about other people's experience of pain and disability and put time into 'self care' even when it felt pointless. Treat yourself like you would treat a stranger.

I'm sorry, all of this advice sounds daft but eventually it did turn around.

coming to terms with a disability is one of the hardest things to do.

I'm not 'ill' but i do have a condition that has taken away my mobility and left me with chronic pain and fatigue, and occasionally needing a wheelchair, and using crutches.

It limits what i can do, and makes every outing an effort and needing careful planning to make sure i can get there/get around/get home and have rest time before/after.

It's isolating, and i don't go out much.. i see a friend twice a month, and a couple of others once every 2 months as they come visit. My lifeline is online, gaming, chatting to friends, finding a niche hobby we all have in common.

The key is to find stuff like that, and having a supportive group of friends in similar positions to laugh and cry about the bullshit of being disabled with. I don't know where i'd be without those people.

OP ... DM me if you want private chat and need a friend. I understand all of this. Xxxx

I think this is it. I don't really know what the point is. Not in a suicidal way, I'm not suicidal, but I'm terribly sad.

Ok

I need to be able to turn a corner but something is stopping me. And I'm not being obtuse. I have no idea what it is. I suspect I don't want this to be my reality.

Therapy was useless for you. It isn’t useless for everyone & it’s unhelpful to make such sweeping statements. Therapy actually saved me & life is great again.

Of course you aren't being obtuse, you feel how you feel.

All you can do is keep trying little changes and see what works.

Do you feel unusually sad this evening @Chronicallyill6?

You can find some things which bring you happiness and contentment even if it doesn't follow the standard trajectory.

I doubt you live anywhere near me otherwise I'd come round with some board games to distract you for a couple of hours :)

Haha! You would win. I think it's just difficult seeing people doing such seemingly simple things and thinking "why can't my body out ball?" I dream of a holiday, or making plans with friends, going into the office. I can't imagine not being sick. It's relentless and sometimes I want to scream and throw things because of the sheer unfairness of it. I feel I never really got a life. I got a bit, for a while, but it was taken away. I'm moaning! I'm sorry! How did people resign themselves to the... well, chronic, nature of it?

And thanks everyone for being so kind during this pityfest

Are there any support groups for the illness you have? I have a chronic condition and their are helplines and Facebook pages that people use to chat to each other.

I do understand and well meaning people will say watch a good film/read etc but you want life to be more than that (and why shouldn't you).
I had emdr for the trauma that caused my disability I'd say it's taken the edge off but it's not cured me of that frustration of my limitations.
I'm a single parent and when I became disabled and unable to work and my friends and family disappeared the one thing that kept me going was my dc but this also brought with it awful guilt that through no fault of their own they became young carers. I realised in therapy I was blaming myself for this instead of the person that caused this.
My main frustration comes from my fatigue to the point even watching tv or reading a book is difficult and I struggle to follow conversations so my world has got smaller and smaller.
I understand the not being suicidal but thinking what's the point. I would never commit suicide but if I'm not scared of dying. I think I'm just probably numb to most things these days in order just to protect my dc and me.
I haven't got an answer but just know your not alone.

How did people resign themselves to the... well, chronic, nature of it?

Cried, shouted, complained to my friends.. and then got to.. well, it is what it is.
This is my life, my spine isn't going to heal, the arthritis isn't going to cure itself, i will get worse slowly as time passes.

Of course there are days/weeks when i am ANGRY at the world for leaving me in this condition, watching friends and family not have to think and 'just go' somewhere.. its so easy for them to go 'just come along' and i can't, because it would ruin their day, and put me out of action for the next few weeks, if not permanently cause me more damage.

But then there are times when i just think.. fuck it, and i try and make the best of it, i just plan to need a few days to recover.

It isn't a linear journey, and you're ALLOWED to be ANGRY about it, to shout, or to be horribly sad, you're allowed to feel your feelings. The trick is to feel them, acknowledge them, then put them away and find your 'fuck it' to make the most of what you can do when you can do it.

Who said you can't moan? Moan away! surely that's what mumsnet is for ? :-)
Your moans sound entirely justified, that all sounds shit, it's like grieving for the life you could have had.
Your nihilist outlook makes sense & is a logical response to the pain of living, I'm not sure that it's as rare as some might assume.

@Chronicallyill6 you'd be surprised 😁

It's one of my goals to play more games so I'm losing at present as I'm learning.

It's fine to have a vent and feel angry, from time to time, it IS unfair. But you still have things you can do and enjoy.

When I was going through a serious illness, I found that doing creative things helped, I painted models and made patchwork shapes, knitted hats, did some creative writing and researched my family tree.
I think I had a kind of background feeling that if I was to die I would be leaving something behind.
I know your situation is difficult to this but being creative may still help.

I recognise every word you’ve said, especially where you say you’re sad. That’s exactly how I feel, I’m sad for myself,
for my loved ones who need to see me like this and sad that I don’t want to live another 10/20, however many years like this. I have absolutely no advice but I do understand.

I understand you’d be unable to have a dog because they need lots of attention but maybe a rescue cat? They can be full of character and have lots of love to give x

Thank you for your responses. They're very kind. I think I need a think. Therapy is probably a good idea but something quite targeted. I'm not, by my nature, particularly crafty but perhaps I could learn!

Yes there are and I dip in and out, plus I read academic papers (probably too many!), but sometimes they're overwhelming. It can consume me.

OP, I send you love. I had a chronic and painful condition for 13 years that really restricted my life but it is much better now. I'm sure if I was still in that position I would feel exactly as you do. It is all so unfair, and I really remember on my worst days that feeling of thinking 'I never really had a life'.

I wonder if you have ever heard of Jodi Ettenberg? She is (or was) a Canadian travel writer who suffered a devastating incident (a spinal CSF leak) that left her completely debilitated and mostly housebound. She writes about it very articulately and you might find it interesting or relatable. Here's a post from her website, just in case: jodiettenberg.com/chronic-pain/

I really get understand @Chronicallyill6 . My life is ruled by a very debilitating illness, and has been for many years. It’s very, very limiting, and it’s the sheer relentlessness of it. It grinds you down emotionally in a way that very few people who have their health can understand.

Neither of these may be applicable at all, but since you asked for advice…
A cat can be a great companion and is much less work than a dog. And…I happened upon something called Postcrossing recently. It’s a worldwide network of people who send postcards to other members who are randomly selected for them. It might not be your thing at all. I find it interesting and quirky, often people put a lot of thought into their cards. There’s quite an international outlook. No membership fee, all it costs is the postcard and the stamp when you send a postcard. It might be a way of feeling linked to the wider world as you presumably did when you could travel.

Everyone's messages are nice. They've made me cry but in a good way