I’m getting tired of talking about my symptoms with my family; my lovely wife I know grows tired of it. I was diagnosed in 2016 when I was 54. I developed psoriatic in my late 20s small patches on my knees, elbows and right foot, I thought it was just rashes, but it never went away and I learned to live with it, it didn’t bother me really. I wish I had acted earlier but I just got on with my life.
I have worked firstly as a nurse then a social worker in the mental health field; I spent all my time thinking about and helping others as best I could. I enjoyed being a professional and have worked with many great clinicians and met thousands of people. It’s rewarding work and now I have been signed off sick by occupational health and haven’t practised for more than a year. I’m hopeful of working again but fearful I will be told I cannot. My symptoms are numerous pains in the soles of my feet, my toes are changing shape and I have gone up two shoe sizes in two years. I’m always looking for comfortable shoes and wear boots now because my ankles give way in normal shoes usually at bad times; it happened a lot before I got into lace up boots. I have pain in both hips, lower back, hands and my fingers making my guitar playing difficult.
I lived in the UK until 2005 and now I live in Perth in Western Australia, so I’m grateful for socialised medicine systems, which have kept my hope up. I take about 70 pills a week including methotrexate which has made my hair very thin, I now get my head closely cropped and have quite a few nice hats ( I like hats). I’ve tried adalimumab and entanercept to no effect; I’m currently taking tofacitinib twice daily for about two months now to no effect.
I have learned to understand my limitations, but I still try to stay active walking every day and hydrotherapy when I can get a booking.
I see a rheumatologist who has a nice mix of sarcasm and sadism, my GP is a star and really helpful I also developed ocular hypotension and have eye drops every night. I gave up alcohol and have lost about 20 kilos it’s nice because I get to wear the clothes sizes I was in 20 years ago. I’m trying to stay positive, that’s all folks.
Submitted on 22 July 2019 by a 56 year old male living in Australia.
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