I have Ankyolizing Spondiolitis and I'm finding it very hard to adapt and to deal with the isolation — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

I have Ankyolizing Spondiolitis and I'm finding it very hard to adapt and to deal with the isolation

System
System Posts: 645

Scope community team

This discussion was created from comments split from: How is everyone coping with isolation?.
Tagged:

Comments

  • Teddybear12
    Teddybear12 Community Co-Production Group Posts: 2,126 Pioneering
    Hi @Anabel Welcome to the Community. Have you tried your Local Council for details of any groups they should have a list for your area. I think the pandemic for me has shown how important socialising is.  If you have any questions please ask. Take care.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,632 Disability Gamechanger
    Hi @Anabel - & welcome to the community. Also try having a look under your county to see if there's anything suitable here: https://www.ableize.com/disabled-groups-and-clubs-by-county/

  • Reg
    Reg Member Posts: 109 Pioneering
    Hello @Anabel

    Have you looked at online learning as a distraction ? 

    I found it great during lockdowns as there are lots of free courses on a whole host of topics or zoom lessons to learn a new language .

    I started with open uni short free courses but there are lots of other ones.

    I know online is not great when you want to get out there but learning something new can be a way to exercise your mind .

    Also if you are not working the university of the third age ( no age limits) run local courses from book clubs to photography of whatever takes your interest and they might have accessible meetings in your area.

    Hope you can find some activities 
    Reg

    I am a Scope volunteer.
  • Tori_Scope
    Tori_Scope Posts: 7,049

    Scope community team

    Welcome to the community @Anabel :) How are you doing today?

    I'm sorry to hear that you're experiencing feelings of loneliness and isolation, and that you haven't been able to find many accessible activities local to you. It's a shame that they don't seem to be welcoming to wheelchair users. 

    Have you been able to take a look at the above suggestions? I think there are some good ideas there :) 

    Just to let you know, I made your comment on the other thread into its own post so that other members would be more likely to see your question. 
    Online Community Coordinator, she/her

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us how we're doing? Complete our feedback form now.
  • janer1967
    janer1967 Member Posts: 13,344 Disability Gamechanger
    Hi and welcome to the community 

    I totally understand as I also became a wheelchair user 4 years ago after losing my leg 

    It is really hard to adjust its like the grieving process adjusting to a different way of life 

    I did a few online courses which gave me another focus 

    Just take it a bit at a time and you will adjust 

    Have you thought of working from home or maybe volunteer as a listening buddy for people isolated 

    You do lose a lot of friends and socialising opportunities unfortunately 

    We are always around here 
  • janer1967
    janer1967 Member Posts: 13,344 Disability Gamechanger
    That's great you have found a social club you can join in 

    I totally agree with what you say you don't realise the reality of what being in a wheelchair is like until it happens 

    Have you had a care needs assessment you can refer yourself on gov website.  Ot comes and does an assessment and will suggest aids adaptions etc to make life easier 

    You will get a life back even though it will be different 

    I would also recommend investing in a power chair as it really opens up your independence outside 
    Mobility scooters are OK but too big to get in some places 

    A folding power chair fits in car boot and means you can do things on your own 
  • vikingqueen
    vikingqueen Member Posts: 626 Pioneering
    @Anabel has your rheumy team not prescribed any medication? My daughter has had ankylosis spondylitis for about 16 years and gets on very well with her biological drugs, she rarely has to take painkillers. I know everyone is different but her drugs changes her life. 
  • vikingqueen
    vikingqueen Member Posts: 626 Pioneering
    Your GP wouldn't be the one to prescribe a biological drug as they have little understanding of them. My doctor openly admits they have minimal training with autoimmune conditions. Your team is the expert and to say because sulfa or another dmard hasn't worked so they won't try anything else beggars belief. I too take the same biological drug as my daughter but for a different disease and I can honestly say it changes my life as well. Neither of us has any problems. If your team offers it to you try it, your body will soon let you know if it doesn't like it and you don't need to taper it if you need to stop.  I hope something helps you feel better soon. 
  • vikingqueen
    vikingqueen Member Posts: 626 Pioneering
    edited December 2021
        Don't dwell on the down side of it look at it as 'well if I don't try I will never know.' I inject a dmard and a biological every week and I hate needles but I don't think twice now because I can remember what I use to feel like and I'm not going back there. I'm a great believer in sort out the pain then you will be a better mind frame. Good luck with your rheumy.  ( don't forget it can take up to 12 weeks to work)
  • vikingqueen
    vikingqueen Member Posts: 626 Pioneering
     I have not had a cold since lockdown, I just tend to stay away from people. I know my immune system is compromised but it's better than not being able to do the smallest things without screaming in pain. You need to talk through the pros and cons with your consultant or nurse if you are that worried, I'm sure they can put your mind at rest.
  • vikingqueen
    vikingqueen Member Posts: 626 Pioneering
        My bloods are done every 3 months, and I'm retired now so I don't need to venture out much. It's my dmard more than my biological that can cause problems, my daughter didn't need to shield and goes out regularly with no problems. Your team will tell you the ins and outs.

Brightness

Complete our feedback form and tell us how we can make the community better.