New here
Hello I'm new here. I got an auto immune condition or got diagnosed 4 years ago. It affected my lungs and pretty much overnight I went from walking, moving, being me to being bed bound, losing my mobility, my speech, my hair, my muscle mass. I was in hospital for 6 months and in icu and when returned home I was given a terminal diagnosis. It's all happened so fast. Three years of searching for a cure of suddenly needing mobility aids and learning to walk again only to lose mobility again and again only to be told you're terminal now from damage to organs. I keep hoping one morning I'll wake up and just feel better. But it never comes. There's no cure for what I have and I'm finding it very hard to cope with losing my body and also my career, friends and life. The daily battles to just try and open a bottle or swallow food well. The constant pain. Being housebound. It's too much.
I saw a link to this forum and joined. I never wanted to say I was disabled mainly through fear or sadness but really need to find support. No one from my old life gets it.
So hello. And thank you for reading. I hope this isn't too imposing a read šø
Comments
-
Hello @glassbottle Welcome to the Community. If you have any questions please ask.
Thank you for telling us your story. I am sorry you are having such a difficult time. We are here to help and support you where we can. Nobody on the forum will judge you.
Have a look around and join in when you are ready. You might like to look under Categories where there are lots of topics and information.
I hope you enjoy your time on the forum. Take care.
1 -
Hi @glassbottle - you're very welcome in this friendly & supportive community. It's very difficult for people to understand what you're going through, but I think that's one thing you'll find here, so I'm pleased that you have joined. Thank you for telling us a little about yourself.
1 -
Hi
Im new too and yours is the first post I have read š you really are going through so much. It makes my problems seem insignificant.
I hope you find some support here, Iām sure there are some lovely members you can talk to.
we are all in situations where we find ourselves here and in need of support.
xx1 -
Thank you š· and you also. Hope you get the support you need. And hello :)
0 -
Ho @glassbottle sounds like your going though a very difficult time, I hope the forum fetches you some relief and on line friendships
1 -
Thank you. š
0 -
1
-
Thank you š·
0 -
Welcome to the community @glassbottle, thanks for sharing your story with us, I hope you're doing as well as possible at the moment. We've got some lovely members, so I hope you'll find it an understanding and supportive place to be š
If you have any questions about anything please don't be afraid to ask.
1
Categories
- All Categories
- 14.1K Start here and say hello!
- 6.7K Coffee lounge
- 60 Games den
- 1.6K People power
- 85 Community noticeboard
- 21.7K Talk about life
- 5K Everyday life
- 47 Current affairs
- 2.2K Families and carers
- 818 Education and skills
- 1.7K Work
- 421 Money and bills
- 3.3K Housing and independent living
- 876 Transport and travel
- 650 Relationships
- 60 Sex and intimacy
- 1.3K Mental health and wellbeing
- 2.3K Talk about your impairment
- 843 Rare, invisible, and undiagnosed conditions
- 889 Neurological impairments and pain
- 1.9K Cerebral Palsy Network
- 1.1K Autism and neurodiversity
- 35.2K Talk about your benefits
- 5.6K Employment and Support Allowance (ESA)
- 18.3K PIP, DLA, and AA
- 6.4K Universal Credit (UC)
- 5K Benefits and income