My StoryWe all have one...
The start of something:
If you are reading this you are probably familiar with the struggle and overwhelm that accompanies chronic health issues. I deeply empathise with you. I have been procrastinating on writing my story as it is painful to recall the details but it is important for me to give you some background. Certainly, the last 23 years of my life have not been a walk in the park, but I look back on it all (..well.. most of it!) through eyes of love and gratitude. I know that these experiences have taught me an enormous amount and I wouldn’t be here writing this without them!
Many moons ago..
When I was 21, I was at university in England and was working hard and playing hard whilst gaining my Bachelor of Dental Surgery. When the knuckle of my little finger on my left hand started to look red and swollen and became painful, I thought I had just knocked it. A week later the soles of my feet became excruciatingly painful to stand on as if I had run a marathon, and running is really not my thing! Every step was painful, but then after a couple of weeks it calmed down. However, the pain in my finger didn’t, so I thought I would venture to the student health department.
The abysmal young doctor who informed me that I had Rheumatoid Arthritis basically said: “You have this condition and sorry there is nothing we can do!”. I have always been quite unflappable in a crisis so I just accepted the diagnosis and carried on. After all, my granny had been disabled with RA so it was no surprise really. I was so young that I don’t think I could fathom the gravity of the situation and my stubborn nature wasn’t going to let this setback bother me. My family, on the other hand, were deeply upset by the news.
Weeks passed and the inflammation spread to other fingers, and my feet got really painful again. I was also suffering from IBS at the same time. Thankfully my mother (who was a GP) encouraged me to ask for a referral to a consultant. He was a lovely man but elderly and looking back on it, rather out of date in his management skills. He basically injected me with steroids at regular intervals over the next 4 years. At times my knees were so swollen that he could drain a cup of fluid from each knee. He injected steroids deep into my shoulder and knee joints and the tendons in my hands when my fingers were curled up in contraction.
Numbing and dumbing it down:
I am grateful that these regular doses of steroid gave me some function back and allowed me to get on with my life and training as best I could. However, I have no doubt that much damage was done to my body through this method of management. The steroids gave artificial pain relief so that I was then walking around on acutely inflamed knees and using my hands and arms in ways that shouldn’t have been possible. I didn’t tell any of the staff in the dental school as I was afraid they wouldn’t let me qualify. Looking back on it, this seems ridiculous but I guess the lecturers, in general, weren’t the most caring bunch so I was apprehensive of their reaction.
Four years later
As I moved into my first practice in a different city, it became clear that I was really struggling. My knees were giving way at times when I was walking, and the pain in my hands, wrists , jaw, knees and feet was debilitating. I was rarely getting a full nights sleep. The new consultant took one look at me and, shocked at the state I was in, took me straight into hospital for a weeks treatment. Here, I had countless more steroid injections but at least now I was resting after them, rather than walking around on artificially numbed knees. It was at this point that the need for DMARD’s ( Disease Modifying Anti-Rheumatic Drug) became known to me. I probably should have had them years earlier!
I remember there being a woman in my ward who was probably 10 years older than me and she had just been diagnosed with RA. She was crying often and obviously really shocked. I can remember thinking that she was a bit of a wimp and being irritated by what I perceived as weakness! Looking back on that, I seem so unsympathetic, which was actually unlike me, but I can see now that my coping mechanism was to have a stiff upper lip and carry on..perhaps in denial! I didn’t see the point in feeling sorry for myself, and other people constantly giving me sympathy was a real downer. I guess what I wanted was empathy.
Now, I realise that I actually never got upset about my diagnosis but instead buried it deeper inside me, which probably made it worse. I have been trying to access those tears in recent times ( hard for someone with Sjogren’s syndrome, ha ha!) , so as to actually grieve the life that could have been. It is my belief that feeling into that disappointment is an important part of the healing process but more about that later.
I was put on Sulphasalazine and Methotrexate and gradually the inflammation lessened and was more manageable. Some pain was still there every day and I had unpleasant nausea and hangovers from the weekly Methotrexate. I also had Urticaria (hives), Angioedema ( lips and face swelling up), Asthma, frequent viral infections and some acute flare-ups, but at least I could function better in day-to-day life.
Time for a change:
By now, I was unfulfilled by my job and desperately seeking a creative outlet. It was time to go travelling. I went off to Australia with my then partner for a great adventure. The freedom of the warm climate did me the world of good and spending much time barefoot, out in nature and in the heat of the sun was truly a great tonic for me for six months. Only when I ventured to the wetter, more humid climate of the Northern territories did the more severe pain return. That familiar ache and lack of movement were not a welcome reminder of the disease still present. I had learned that even warm dampness was detrimental for me.
On returning to the UK, sea air and the bohemian nature of Brighton was calling me and life there was never dull. Again, the severe pain returned and I hated my work. I felt trapped and unsupported and this led me to escape from the pain and responsibilities through partying a lot at the weekends. Several other Autoimmune conditions that I also had (Urticaria, Angioedema, Interstitial cystitis and what I now know to have been Endometriosis) were made much worse by this burning the candles at both ends. I came to the realisation that I couldn’t continue in work I disliked and my creativity was what mattered to me the most. In fact, this stifling of my creativity was making me more ill.
From then to now:
In 2001 I was now with my husband-to-be and at the start of a path of healing that has taken me to the present moment. I gave birth to two beautiful sons which entailed coming off the Methotrexate and taking oral steroids as the inflammation did not subside in pregnancy, as it does for some apparently. This left me with severe osteoporosis and tears to two of my shoulder cuff muscles. Sadly, I didn’t know how a change of diet could improve the levels of inflammation then, but at least the steroids allowed me to get through the pregnancies.
Over the earlier years, I was officially diagnosed with Sjogren’s syndrome and endometriosis. I had an operation to remove an endometriotic cyst on my right ovary after a couple of incidents of pain so severe that I required an ambulance. Hydroxychloroquine (Plaquenil) was added to my list of medications and I was persuaded by my consultant to move onto biological treatment at one point. The self-injected “Enbrel” provided amazing relief from the RA for about 4 weeks but then tailed off and also caused me to have excruciatingly dry eyes, to the point where I was suffering corneal abrasions. So I desisted with the injections and became determined to find another more natural holistic approach to my conditions or what I realised now was actually Multi Autoimmune Syndrome.
There are still imbalances to be rectified with my health and this last year has been tough as I have suffered from chronic fatigue and borderline hypothyroidism. However, I know that many aspects are healing, my digestion is much much better and the Rheumatoid Arthritis is lessening its fiery grip. The urticaria is 99% gone and the angioedema only occurs if I accidentally ingest something I am allergic to.
All of these symptoms would be immeasurably worse if I was not following my regime. It has involved huge amounts of self-inquiry, energy healing, meditation, modifications in diet, expressing my creativity and exercise when possible. Additionally, the support from my loving husband Anthony and my dear family has been immense. I have reached a point where the Rheumatoid Arthritis is much better managed with much less chemical load on my body. I feel proud and motivated to continue to see just how much improvement I can experience with determination and perseverance. My story is becoming a happier one!