What next?!

[DramaLlamadodah]

Hiya, dip in and out of this topic but more of a watcher than a poster I’m afraid!

Feeling rather “what’s the point?!” at the moment and I know you all have similar issues so I hope you don’t mind me sounding off a bit.

I have several long term problems/disabilities. Currently it’s my eyes causing me issues. They are so so dry and painful. I’m working reduced hours of 6 hrs split into 2 hour chunks so I can shut my eyes between shifts, I only managed to work 3 days this week and now it’s the weekend and it feels like I have been on a long haul flight. I will have to spend the weekend with them closed as much as possible, I cant drive, watching tv hurts. I have been referred for an “urgent” appointment but that’s not until January. I was thoroughly miserable being off this week, I hate not working and not having structure to my day. I looked into going private for a consultation and mention was made of maybe getting punctal plugs to see if that helps the dryness but that’s looking at £700 ish 🙁 I have started taking cod liver oil capsules and multi vits, I also use an eye mask and stay well hydrated but I’m a bit stumped really as to how to improve them.

I also have ruptured and subluxated bicep, along with bursitis tendonitis and the early signs of arthritis in my right shoulder.

Oh and I’m a wheelchair user, my legs don’t behave either.

The doctor will sign me off without issue but my mental health is so very poor when I don’t work. I feel like I’m stuck between a rock and a hard place.

I can’t see well and I can’t move well and I feel like I’m just a waste of space and air. All my many many ops and mobility issues I have managed to keep relatively positive but the eye thing is like icing on the cake.

I don’t know what I’m hoping to achieve with this thread really but if I’m ranting here I’m giving my husbands ears a break so that has to be good right?!

Hi @DramaLlamadodah I can relate to the not wanting to give up work it’s a huge part of your identity. For myself I became increasingly disabled but carried on working but then when I was pushed into a health crisis I was suddenly a nothing. Single so couldn’t hang my hat on still being a wife or a mum.

Is the mental health worse than the physical pain and frustration? Is it the paid work and the money or would it feel long as you did something “worthwhile” it wouldn’t make you feel like useless lump! As a society we spend so much time effort labelling those who don’t work as not trying hard enough that we do believe them ourselves. Then course if you have to rely on financial assistance half population would be quite happy if all you could buy was bread and gruel. Wait what you had a coffee in a coffee shop!! You outrageous overspender living on tax payers money.

I have various I’ll health and disabilities so I do feel like my life now has some slow structure nothing exciting but when you live in pain with a body that can’t keep up with pace of life. You do learn to adapt and find a way.

Have you looked into all sort fancy software that could help like screen readers? Not sure how that may work with your job. Must be difficult when at this stage you don’t know if you are doing more harm than good “pushing on” and it will Improve. Or it’s making it worse.

On TV front have you tried audio description it’s on settings (don’t ask me where) means you can keep u with action without having to see it. Could mean if you have favourite programmes you may be able get up. But I know Of course it’s not available for everything.

There is only so much you can do with being positive it’s not those fail don’t believe enough sometimes bodies are just rubbish no shame on making your life as bearable and happy as you can. You can still be just as worthwhile If you can’t work or do something else. We are who we are not what we do

Hi @Akire Thankyou so much for taking the time to post

I spent years and years having loads of surgery’s and wasn’t able to work until 2015, in my head I wanted to get 10 years in if I could. I’m 37 and I know I won’t be able to sustain these hours for much longer (I am usually full time when my eyes behave!).

You use the words “health crises” which resonates, I had a hospital stay in April and a new diagnosis, new pills. Then started my new job a week later! My mental health was bad in the job I had at the beginning of the year, I kept thinking how tempting it would be to go home and neck all my pills, so change was definitely required!

Feel like I’m just kind of “managing” my conditions, but there are too many to get a hold of at the moment and I feel they are spiralling.

I have thought about software to help with the reading screens, I constantly hop between different programs and I’m not sure if it would work but I don’t actually have a diagnoses for my eyes yet, I only know they aren’t producing “good quality tears” and my eyesight is blurry more often than not. I have an eye clinic appointment for mid dec (was originally mid jan) so hopefully I’ll have some answers soon.

I hadn’t thought of audio settings on the tv, what a good idea I will have a look at those today. Using audiobooks and podcasts an awful lot at the moment.

My mental health is certainly wobbly. Not so bad as it was in the beginning of the year, but bad enough. I think the eye stuff is really not helping. I can rest my poorly shoulder and strap it and generally be careful with my joints but I can’t do much to stop my eyes misbehaving apart from closing them a lot and that feels unsustainable.

You are right re having self worth tied up in a job, it really shouldn’t be the case but it is!

Thankyou so much for lending an ear and responding, just writing it all down helps somewhat.

What an essay sorry 🙈

That’s ok it does help sometimes doesn’t it. Think much worse when don’t know what future will be. Most of us can get use to chronic pain and illness to a certain degree but then it’s new or unknown pain that sends us off in to panic. No wonder you feel so worried when your eye situation isn’t certain yet. Hopefully there will be something they can do help and with a diagnoses work should be able put things in place more easily. You sound amazing we all can be down when we live with such difficult situation when we actually do much better than we give ourselves credit for.

Do feel free drop in and chronic pain cafe chat threads everyone in same boat with good days and awful days and everything in between.