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How do you manage to continue with work?

Posted , 5 users are following.

Lainey8
Lainey8

Hi

I was diagnosed with PA back in January this year. I also found out that I am HLA B27 positive and have spondilitis. I had crippling back pain and wrist and finger pains. I tried to ignore all of this to start with and was determined that it was nothing major and that it wasn't going to get the better of me! I started on methotrexate (15mg weekly) back in late July, but I have recently had it reduced to 10mg, due to side effects. Although I am still in some pain, my main concern now is the fatigue and general rubbish feeling that I wake up with every day. My doctor has signed me off work and said that ignoring all I have been through this year, was not the best idea. I have a physically and mentally demanding job and dont know if I can continue with it.  I was wondering if anyone else struggles with working and if so, how do you get through it?

Thank you in advance x

0 likes, 25 replies

25 Replies

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  • Carol_JM
    Carol_JM Lainey8

    Posted

    I am on the same place as you. I have had AKS for a number of years and only been diagnosed with ps recently.

    I am just in my early 50es and don't want to be on the scrap heap yet

    • Lainey8
      Lainey8 Carol_JM

      Posted

      Hi Carol

      Being on the scrap heap describes how it feels very well! I have been signed off for over 6 weeks now and I am getting worse rather than better. I have followed the wonderful advice given on this forum though and it has helped to keep me positive. I am trying to get out for a walk every day (even in the rain)! I have contacted citizens advice and checked out various websites to see if I am eligible for any financial support. Unfortunately I will not get anything as I am too mobile for PPI and as my husband works full time, we are above the threshold for help. I am now considering working part time in a different role and finding extra work to do from home. 

      I have been back to my specialist and he said that the methotrexate dose I have is not working. I now have inflammation in my elbow and shoulder and my back has got worse. Sciatica is something else that I now have! I will be getting the methotrexate via injections soon and the dose will be raised. I was assured that I wouldnt struggle with the same side effects if I take it this way. He has also said I shall have a course of steroids to relieve the symptoms in the mean time. I am still waiting for that to come through from the hospital. 

      I try so hard to remain positive, but definitely have days when I wonder if it will ever get better. My doctor thinks I have depression, but I think I am just fed up with hurting and being stuck at home, while everyone else is out working having fun. I have now started to come to terms with the fact that this condition is life changing. All my goals and aspirations seem to have been thrown in the air! I am determined to make new and more achievable goals and to sort out a suitable job that I will still enjoy. I will also take any advice that is thrown my way!!!

      I am sorry that you are suffering and wish you well xxx

    • Lainey8
      Lainey8

      Posted

      *PIP not PPI!!!
  • sheila65847
    sheila65847 Lainey8

    Posted

    Hi Lainey,

    you WILL be entitled to PIP as it's not means tested - so it's not based on your income. Get in touch with the Disability Employment Adviser at your local Jobcentre. There is a lengthy application form to complete and you will need to attend a medical.

    • Lainey8
      Lainey8 sheila65847

      Posted

      Hi

      Thank you for reply. Unfortunately, I am not eligible for the PIP. The man I spoke to said that if I can walk around and do tasks for myself, I would not get anything. I also looked into getting other financial help or benefits and these are the ones that I couldnt get as my husband is working! I could have really done with some help as my husbands wages aren't as high as we would like!

      Thanks for your advice though x

    • lucynewas
      lucynewas Lainey8

      Posted

      Re PIP - check out the disabilityrightsuk.org website.  They have a good section on PIP to help you work out if your symptoms would qualify.  It's not just about being able to move around.
  • lucynewas
    lucynewas Lainey8

    Posted

    Hi Lainey

    If you're in the UK, ask to be referred to occupational health, to explore adjustments and adaptations, including flexible hours, working from home, mini-breaks, - access to work may be able to help.

    • Lainey8
      Lainey8 lucynewas

      Posted

      Hi

      Thank you for that. I will check out that website now. I spoke with my head at school yesterday and she was so helpful. She asked if I would like to see occ health. She has also offered to find me a different role and work less hours each week, permanenty, or just until I start to pick up. 

      I really appreciate your advice x

    • lucynewas
      lucynewas Lainey8

      Posted

      good luck with that - I happen to be an independent OH practitoner myself, so do my all means PM me if you'd like more specific advice.
    • sheila65847
      sheila65847 Lainey8

      Posted

      Great news Lainey! Glad you have a helpful, supportive boss. It makes a vast difference😀 x
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