Hi

I am Liz and new to this forum. I have joined as I am unable to get help from any of the usual sources given the virus situation. I have Scleroderma, polymyositis and osteoarthritis which combine to render be almost immobile (this is relatively speaking to what was my normal world) I need to use a wheely-walker to get around the house and outdoors, For longer distances I use a Travel Scoot but am now so weak I can no longer dismantle this and get it in and out of the car so am reliant on help if I want to get out. All very frustrating as I am naturally a very active person. the arthritis clinic has gone phone based and don't seem interested in me as an individual, the GP can only offer codeine which does not help and the hip surgeon is off sick and is not operating. On consulting a private surgeon he strongly advised against surgery on my hip because of other health conditions, this left me devastated, depressed and not knowing where to turn. Physio and other services are not operating because of the virus. The surgeon recommended daily walks and keeping moving, hard to do when alone with no support. I then found this community and hope it can give me the motivation to get going again, I have signed up for Let's Move with Leon so will see how I get on!

Comments

  • Poppyjane
    Poppyjane Moderator Posts: 395

    Hi @lizmcf7

    Welcome to the community, you have numbers of conditions which are making you increasingly immobile and are also struggling with pain and lack of support from the regular services. The pandemic has affected so many people in lots of ways but I hope that now you have found us we will be able to give you the emotional and social support that you crave to recharge your motivation.

    I have been following Lets move with Leon and have found it very useful because I can go at my own pace with no one judging how well or how little I can do. I hope you find the same experience.

    I attach two links which you might find helpful

    https://www.versusarthritis.org/about-arthritis/conditions/systemic-sclerosis-scleroderma

    Please take time to browse around the website and dip into the different forums . They are so varied and I hope that you will find somethings that attract your interest, our members will be there to share their advice and experiences with you.

    If you feel like talking with someone the Helpline is open Monday - Friday 9.00a.m. - 8.00 p.m.

    I look forward to hearing how you get on with Leon and his mum.

    Best wishes

    Jane

  • frogmorton
    frogmorton Member Posts: 27,670

    Hi @lizmcf7

    Reading your post I felt very concerned for you it seemed that everything you tried you hit a brick wall.

    Then I got to the end and saw you found us and feel it will help🙂

    I was so pleased even better that you are giving 'Leon' a go. I am doing the programme too and so far so good!

    Welcome welcome🙂

  • lizmcf7
    lizmcf7 Member Posts: 3

    Leon has been huge help, I have recently revisited the programme and it has got me moving more freely again. I was trying to get fit for a hip replacement but that has been postponed indefinitely as it seems I have too many platelets and am therefore at risk of clots. I am now wondering it it is all worth it and I should just continue to try to keep as fit as possible and resign myself to not being able to go out without someone to erect my Travel scoot for me.

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