Blog: A year of learning how to cope – and live with – my new diagnosis
If you have a chronic illness prone to flare-ups if you do too much, you need to learn about pacing, especially when gardening.
Pacing is all about balancing out activity levels and rest to keep active without worsening your condition. Firstly, work out a baseline activity level, where your pain won’t flare up. This gradually increases so you can do more and become fitter.
I was well aware of pacing, as I’ve had a hypermobility condition all my life. However, I am terrible at it. Once I get outside, time seems to disappear and it’s only when the chronic pain/fatigue suddenly hits that I realise I’ve done too much. Then the flare-up begins, with intense pain and exhaustion for anything from a day to almost a week.
In September, after many months of scans and tests, I was diagnosed with axial spondyloarthritis (axial SpA), a painful, progressive inflammatory arthritis. In my case, it mainly affects the lower spine, sacroiliac joint, hips, knees and neck. Inflammation eventually leads to bones fusing, leading to stiffness and pain.
Pacing – Axial SpA affects many things
As it’s a systemic condition, it affects many things apart from joints and tendons. The eyes and gut can be affected and you’re at a much higher risk of stroke and heart conditions.
The condition probably started in my early 20s (it tends to begin in young adults) but was masked to a certain extent by hypermobility injuries. It was initially thought I had Ehlers-Danlos Syndrome but this has been downgraded to a hypermobility disorder.
It appears my mother also had it, as she ended up in a wheelchair, undiagnosed. One of the later symptoms is the fusing of ribs to the sternum, pulling and distorting the spine forward and compressing the lungs. When measured not long before she died, my mam had lost 6 inches in height! Her breathing difficulties were diagnosed as COPD, even though she never smoked.
Not a decent night’s sleep for 10 months
Things got much worse at the start of 2022. Apart from the decades-long back pain, my hips and knees started to hurt. I didn’t have a full night’s sleep until the anti-inflammatories kicked in during October. One kep symptom is pain and stiffness that gets worse after rest, or staying in one condition for too long. I generally woke up about 3am, when my painkillers wore off and couldn’t get back to sleep for the pain. This feeds into the general pattern of exhaustion.
My Axial SpA diagnosis is late, and I’ve already lost one and a half inches in height. However, it’s not too late for me. Now under Rheumatology at my local hospital, I have a specialist physio and am on a waiting list for hydrotherapy. I take the anti-inflammatory Celecoxib, which has been a huge help, plus paracetamol and codeine for pain flare-ups.
My left knee, damaged by hitting it with a large pot 18 months ago, has been difficult. In November, I had to have it aspirated (a big needle stuck in to draw off fluid) and had a steroid injection. This was NOT good – I whimpered like a child. The steroid helped initially but with weakness and osteoarthritis in it, the knee seems domed to be painful.
Pacing – exercise gently is the key
Exercise helps this condition in moderation. Each morning I do 15 minutes of stretches specifically tailored to help my lower spine, neck and ribcage. In the afternoon, I do 5 minutes on an exercise bike and 15 minutes of yoga-based back stretches over a bolster. Gardening has had to be cut into very small portions. Expect tasks from me to be spread out over several chunks! Here’s more about gardening with back pain.
I find sitting on a stool helps when gardening but I have to move around often. I can’t kneel, so the raised bends and pond have solved that problem for me.
If you feel you may have axial SpA, visit your GP. Before it was diagnosed, it was thought I had rheumatoid arthritis. The sooner you get treatment and a tailored exercise regime, the better your prognosis is.
For more information on pacing with a medical condition using the example of gardening, visit www.ouh.nhs.uk. You can find help and advice on axial SpA at nass.co.uk.
