Hi everyone,
I became ill nearly a year ago to the day and so I thought I would share my experience of Reactive Arthritis with you. I don't share a lot on social media, and have never posted in a forum in my life, but to "celebrate" this odd anniversary here goes nothing...
Before last November I was a very physically active 34-year-old woman with a stressful career and busy social life.
It took 6 weeks to get a conclusive diagnosis, during which time I was the most ill I had ever been in my life with what I now know to be classic Reactive Arthritis symptoms - pain in all my joints and tendons from the hips down making walking more than 10 steps very difficult, extreme fatigue, inflammatory temperatures, mind fogs, sensation of a UTI, bloodshot red raw but weeping eyes, extreme dry mouth, trouble breathing etc. etc.
During those weeks, and once I received a diagnosis, I was terrified. Terrified I'd never get better. Terrified I'd never walk normally again. Terrified I'd never be able to go back to work. Terrified I'd never be able to swim, or run, or dance again. Terrified I'd never be able to have children. The list went on.
I spent quite a lot of time in bed on the internet looking for answers, my faith in my doctors having been severely shaken by my experiences in the weeks without diagnosis of constantly being sent away, at best being told to rest and come back if things failed to improve, or at worse being looked at almost as if my symptoms were psychosomatic. I wanted to know: Why had this happened to me? (Answer, doctors never did establish the infection that triggered my immune system's inappropriate response.) What was my prognosis? And what could I do to make myself better, as nothing doctors were giving me (anti-inflammatories and steroids) were doing much good?
I wanted to tell you all that, a year on, I am better.
It been a long road. You'll all know how Reactive Arthritis works so as you can imagine there's been lots of ups and downs. I was discharged by the consultant after 6 months but I'd say it's only the past few months I've started to feel 100%.
Everyone is different and so what worked for me may not be the same for you but I thought I would share what I found helpful.
I read online that some people had found acupuncture helpful. I've never held too much truck with alternative therapies, and was scared of needles. But I was so desperate to try anything to get back to "normal" I booked an appointment with a Traditional Chinese Medicine Acupuncturist. When the first needle went into my foot I felt a pleasant rushing sensation down my leg. Where there had been pain and discomfort was suddenly energised and I was converted. I went weekly for months and I believe, along with time, and other changes detailed below, it has helped me to recover.
Once the flare ups started to get further apart, and I had a bit more energy between flares, I bit the financial bullet and joined a gym with a sauna and steam room. I found the heat of the sauna especially helpful, both with the dreadful cold aches in my bones I had almost continually and with loosening the tendons in my legs.
About 3 months in I went to see a hydrotherapist and got a set of exercises I could do in the gym pool myself, which I tried to do once a week for just 10 minutes.
When I felt like I had more energy, about 4 months in, I cautiously started aqua aerobics classes once a week. I told the instructor about my condition and she was brilliant and stopped me from overdoing it. (The temptation to push myself too hard in an attempt to feel like I was normal again was something I have battled with during my recovery.) Even though I struggled, had to take a lot of rests during the class, and hobbled out of the pool at the end, the sensation of having done something physical, however minor compared to what I used to do, was such a psychological boost.
As my energy levels increased, I started to go to aqua aerobics a couple of times a week. And then I found a very gentle Iyengar yoga class, and started going to that too. Although I had to block out the fact that I was clearly much, much less physically able than other people in the class that were more than twice my age, stretching the tendons in my legs seemed to help with my mobility a lot. The yoga classes also helped me to quiet down the terror I felt.
I read a lot about diet, and, although I didn't follow the strict elimination diet recommended by some, I did find there were certain things that did increased my inflammation: mainly red meat, sugar (both natural and processed) and caffeine so I avoided them (although wasn't puritanical). Now having given up caffeine, I'm not going back!
But over the past year I would say my recovery has only been in part thanks to these physical activities. My state of mind has been equally important. In the first months, whenever I thought about, and so became distressed about the future, an inflammatory fever spike would happen that I could chart with a thermometer. This made me realise that my mind and my body were not two entities but part of the same system. Sounds obvious but this is not how the medical profession was treating me. And so, that's why I would recommend yoga and acupuncture (I have since started gardening which is gentle enough and relaxing too).
I would like to say if you too are stressing about your future, there is hope. Celebrate even the smallest advances you make - even if it's just getting out of bed to have a bath. Coping with Reactive Arthritis is really hard and probably no one you know even knows what it is. Please give yourself a break. Don't beat yourself up. Be kind to yourself.
You can do it!