Lived Experience Forum

[MoonGal]

It's a hard thing coming to the realisation that I am (to use the insurance phrase) 'totally and permanently disabled". I was such a tryer, i worked hard, i was high functioning for a period in my life and really got somwwhere career wise despite my wildly fluctuating moods and mental pressure, stress, everything. I did it and I did myself (and my ma and pa) proud.

Then, I had a catastrophic back injury, resulting in surgery and a very long slow recovery, chucked around awfully by the aenesthetic and pain relief, and my world crumbled. I now live with chronic sensitised pain syndrome as well as bi polar, PTSD, OCD and anxiety.  I fell apart and could not cope with both my mental illness and my physical pain, the two combined brought me undone. Despite trying again and again, I have failed at all the work I have tried to do in the past few years. now officially an "unreliable employee" I can't sit, or stand, or walk for any length of time, the pain ramps up and becomes clamatous to my mental health and concetration.. The mental energy it takes just do put one foot in front of the other, precludes being able to concentrate on 'work'.

It eventually came to me that I was no longer 'fit for work' but that was a horrible hard decision to make. I felt like a failure, that my contribution in the world had come to an end. Wanting to die became a daily prayer. But - i got through that and am in the process of an insurance claim (with lawyers to help) and yesterday a milestome of having the reports by my doc finished and sent off to the lawyers. Now it is in the lap of the gods-of-insurance.

I realised and accept that life happens, that this all just happened to me, I try not to take it personally, just accept it now. But, I do feel somedays like a massive boil ont he bottom of humanity! <there's a picture> and have to work very hard to self-talk that I am a woorthwhile human being, that my illnesses and pain is not "me" they are just happeneing to me. And that, even if this insurance claim goes nowhere, I tried my best. still, it is a hard field to hoe, this life.

[CannonSalt]

Hi @MoonGal , I'm sorry to hear that you've been feeling like a massive boil on the bottom of humanity lately. In a way, what you've gone through might be like what people go through when they realise that they have to retire for their health - in that they take stock again of what makes life meaningful to them now that they're not working as they once were. I just wanted to say that you're not alone with those doubts of one's own worth, post-work. Putting a value on your unpaid work might be worth thinking about.

[AlienBP2]

Life can be tuff moonGal ....
I'm wondering if you have tried swiming ?
Perhaps dog paddle as your joints would be " unloaded" and that could help you get fit perhaps without much pain?
Do you have a heated pool in your area...?
Just trying to help Allan

[AlienBP2]

MoonGal swimming would also allow you to interact with other people to....
Have you thought of a writing a small poetry book you maybe to sell on the web... To lift your self esteem Allan

[Appleblossom]

Hello @MoonGal

I also have difficulties recalibrating my sense of what is a worthwhile life outside of career and typical success stories. The challenge comes in redefining it to be fair to your circumstances and developing from there.

My bank manager said "predicted" I would struggle and might have to go on a disability pension when I started setting up my teaching business after my marriage ... I didnt realise at the time how much my pain was written on my face ... but some lovely ladies at gym let me know in a kind and respectful way ... as I was working ... always working ... at rehab exercises.

I probably have a similar pain sensitivity or fibromyalgia but it is not technically diagnosed yet beyond the cervical disc problems  ... a doctor in my choir suggested I had it and gave me some handouts and she also has it ... but I have not yet been able to be treated with sufficient respect by the medical profession to get my needs met.  I did end up getting a disability pension ... but somehow the diagnoses stopped there ... I am still hoping.

One thing that helped me a long time ago was that somehow I ended up singing next to a lady who was an ex Grammar School Head of Languages but had brain tumours and never worked again ... we bonded over disability and our mutual gentleness made it possible for me to sing with her and contribute socially ... she helped me face my disability with dignity. I was very lucky to meet her.  Now when I sing with boisterous types my neck often goes out ... I have to be very careful.

Good Luck finding a way to live this life as it is without giving yourself a hard time ... it is enough to deal with chronic pain and lack of career and social exclusion ... we dont want this to happen ...or be blamed or rejected by others which unfortunately happens a lot.

[MoonGal]

Hi AlienBP2 - Yes I have done swimming and it was great for a time, then I developed bursitis in both my shoulders, swimming and doing hydrotherpay...
Dog paddle! Maybe I need to get over my amazonian self image and just dog paddle. 🙂 yeh, good idea. get back to the pool. thanks!

[MoonGal]

@Appleblossom I have an email from a reply you wrote but can;t see it here in the Discussion. Just want to say thank you. ❤️ there is much to think about in what you wrote and I appreciate your time and care.

[MoonGal]

- DIGNITY.-  especially your mention of "dignity" @Appleblossom. 

[Former-Member]

Hi @MoonGal
I have been wanting to reply to you for a while but my energy and motivation levels are on empty battery levels.

You sound like a strong person who lives daily with chronic pain. I can only imagine how difficult it must be to be somewhat physically limited in that way. I stopped working early this year afte becoming very unwell and I've felt such enormous guilty and shame about this and yet know that I have really not been stable enough to do so. And right now the future doesn't seem like something I can plan for. However I can say that I know an absolutely beautiful person who lives with extreme pain from dystonia and hasn't been able to work for a long time but he writes stories and poetry and plays. He leads a poetry group and is the kind of person who finds time for anyone and makes them feel wonderful. He is a bit of an inspiration to me with what he does despite his pain and illness and constant medical appointments. So I guess I'm trying to say that our worth isn't only defined by our 'work' or doesn't have to be anyway... We may not even know of our impact on others... But I suppose we keep on trying ...
Lj

[MoonGal]

@Former-Member, thank you for your encouragment, and sharing some of your own lived experience. Your friend who lives with dystonia has found a beautiful life in the pain, and that gives me some hope too. I think it is because right now as I go through the lawyers and all the palaver - it is all out of my hands now, and I have to just rest and be quiet while it all goes through. It can take months and months.

I am sorry to hear too that you too have had to cease work because of your health. 

I have a lot to live for, and a beautiful, supportive partner, a gorgeous greyhound girl and foster greyhounds, so I do 'contribute' at the moment my life is much proscribed, but i can be 'dog-mother' and partner, poet and daughter, and I need to rest in that and say it is 'enough'. I am not good at resting, I am pretty driven, so having to slow down and match my life's pace to my body, my new 'normal' has taken a long time to accept.

I lurch from being very glad I can just 'stop now' and at other times feeling useless, I have to work hard to keep equilibrium - isn't that the way of mood disorder anyway. Perhaps once the outcome of my claim is done i can lift my eyes to what's next. In the meatime I can create my artworks and poems, share and engage here. I like this community.