My journey towards poor health began in Zimbabwe.
I first started getting joint pain when I was 39, during my second pregnancy in 1996. I also developed food sensitivities at that time, which have remained with me.
The sudden unexpected loss of my husband 3 years later triggered further symptoms.
Diverticulosis was diagnosed in 2000. I was prescribed opioids for my joint pain the same year together with an anti-depressant and an anti-anxiety. I started prednisone treatment for polymyalgia in 2007. IBS was diagnosed after two laparoscopies and the removal of my appendix in 2008.
I was finally referred to a specialist physician in 2009 and was diagnosed with Lupus (SLE) and Rheumatoid Arthritis. (There were no rheumatologists in the capital then, and that was still the case in January 2021). After getting about on crutches for a year, I had a right hip replacement in 2011 due to avascular necrosis and was warned that the left hip was also showing signs of necrosis, apparently from being on too high a dose of prednisone for too long.
I tried various prescriptions for fibromyalgia starting in 2011. This did have the unwanted side effects of my falling asleep at work! My life was a cycle of work, shop, cook, eat, sleep on weekdays, and on weekends I crashed and stayed in bed.
In 2017 I left the specialist physician for an endocrinologist, as my GP felt he was more clued up about autoimmune diseases. My blood tests showed no rheumatoid factor and the arthritis was then diagnosed as osteoarthritis, as my bone density was so poor, and my bones had been breaking easily (left shoulder in 2006, then left knee in 2017). I started medications for osteoporosis. He tentatively diagnosed Mixed Connective Tissue Disease.
Later that year I developed a rash on my face, which quickly spread to the rest of my body, diagnosed by a dermatologist as eczema. The endocrinologist was not happy, and he put me on to a Johannesburg-based Zimbabwean rheumatologist whilst she was on holiday in Zimbabwe. She ordered all sorts of tests, one of them confirming I am HLA-B27 positive. She diagnosed Psoriasis and Psoriatic Arthritis with the beginning of Ankylosing Spondylitis. I started on medication not available in Zimbabwe, so very expensively imported from South Africa. Once she returned to Johannesburg, we consulted via WhatsApp video chats.
After the second parcel of medication overheated in transit from South Africa, I agreed with my GP that it was time to go back to my roots, and move to the UK where medication was more readily available. I moved here in January 2021. Hello covid! Hello lockdowns!
My health took a big dip – I’m sure the move was the trigger. My back, left hip and leg pain worsened to the extent that I could not walk more than 30 meters before my body locked up. I now use a walker to walk short distances. I am often too sore to get out of bed, and I can sleep 14 hours at a time, then dragging myself out of bed, with brain fog only clearing for a few hours in the evening. Depression set in, despite being on an anti-depressant.
I am grateful that I was eventually referred to a PICS Pain Clinic course which promoted mindfulness and movement and clearly explained the dangers of strong pain killers. Fortunately for me, the PIC pharmacist changed my anti-depressant to one that also covers anxiety, and in addition, helps with fibro pain, and he recommended paracetamol for arthritic pain. It’s working in parallel with meditation and positivity and movement!
I was able to see a physiotherapist in December 2021, and he sent me on a group workout course. Whilst this did help my mobility, it also knocked me for six, and I would be bed-ridden for 3 to 4 days after each fortnightly session. I was too demotivated to practice at home, as I was losing so many days. I perked up the minute I read in the Ilkeston Life about the FibroActive Group teaching Qigong and Tai Chi and I feel optimistic once more. Better still, I am also on their upcoming Fibro Therapy Course. The physiotherapist was also happy to hear I had signed up.
That doesn’t mean I’m giving up on medications – yet! I have now been on a medication for 12 months, and it has done nothing to improve my psoriasis, or my mobility. My dermatologist has persuaded the rheumatologist to let me try a new medication specifically for psoriasis AND arthritis, and I start this in early December.
The gifts that my autoimmune disease (whatever its name) has brought with it since 1996 are mostly still with me today: Raynaud’s, Livedo reticulatas, Sjogren’s, IBS, photosensitivity, frequent bouts of uveitis and fatigue.
I have a goal; to be able to travel to the Netherlands next summer to enjoy a visit with my younger daughter.
26 September 2022