Here is my story about my rheumatoid arthritis and fibromylagia.
How it started
My first ever attack was on 25th February 2001. This was the first of many attacks, lasting up to 6 weeks at a time.
A visit to the medics and my diagnosis was: you have a virus!
For me, I would describe what was happening as like something had taken over my body, the invisible disease! Some months later the attacks happened again, then again; then the medics suggested medication and injections…
Deep down I was exhausted, both mentally and physically. I was devastated; how could this be happening to my body? I keep fit and eat well, so what is the problem! The medics at this point are now saying it could be periodic rheumatoid arthritis and that it may burn out! Well, there’s hope and I fixated on this possibility.
To keep my condition masked I continued to take a cocktail of prescribed medication so I could function both for work and golf. I sized down my exercise classes, then eventually delegated them fully elsewhere. I coached netball rather than played, then even this had to be phased out. Accepting these changes was very difficult!
I began to call off going out with friends and for work entertainment — making excuses, or at least taking the lead on the venue to avoid places that had stairs. Even at home stairs also had become a problem; we had our home adapted, with a downstairs bedroom en-suite. Even at this point my friends, employers and work colleagues had no idea of my condition. My family new a little, however not too much — I did not want to worry them.
To be at my best for work I would go home, my husband would have a meal ready, then I would shower and he would tuck me in for the night. Each day I was getting more and more fatigued and tired.
After many years and seeing many consultants, I was eventually diagnosed with rheumatoid arthritis and fibromyalgia. I was devastated! I wanted a cure not a label! At this point I was on steroid injections and 28 tablets a day! Everything began to spiral out of control. I was mentally and physically exhausted! I could not do anything — I had pushed and pushed to hide my condition and now I could not function. To make things worse, I had to be taken home from work! I was physically and mentally drained, burnt out!
What happened next!
Some big lifestyle changes, rest, diet changes, stress-related changes. A work and life balance!
Why did I hide the condition?
I did not want to be different, judged, labelled. I was fearful for my relationship, long-term health, finances and losing my job.
What have I changed?
I practice mindfulness and wellbeing. I listen to my body. I have a work–life balance. I have changed my diet.
What should I have done?
At least confide in a friend — seek counselling — join online groups — share experiences. Not try and win the fight alone!
“It’s now February 2021 — I now have my condition comfortably managed for me and I’m happy to discuss with people with similar conditions what lifestyle changes and practices may assist them”