I don’t know about you, but I have had to learn the art of acceptance and it hasn’t come easily. I always wanted to control situations – probably as a way of feeling safe within the world. However, what I have discovered is that the more I try to control people, places and things the more unhappy I become and those around me.
A few years ago now I was diagnosed with a rare disease that isn’t curable. Basically, the mast cells in my body don’t work properly and I go through the day having allergic reaction after allergic reaction to everything and anything.
In 2015, I noticed that a rash was growing on my upper thigh. The rash had been there since I had had my daughter in 2006 but hadn’t grown in size or shape before. It travelled down the thigh and the same happened on the other leg too. It didn’t disappear and was always there. For a vain person this was horrible – I looked like I had a permanent case of chicken-pox. So I went to the doctor, who referred me to a consultant and eventually, in September 2016, I was diagnosed with cutaneous mastocystosis.
Mastocytosis occurs when too many mast cells accumulate in the skin and/or internal organs such as the liver, spleen, bone marrow and small intestines
Following my diagnosis, I had to have a blood test to rule out systemic mastocystosis. This is where the mast cells don’t just accumulate abnormally on the skin but also in the internal organs. After loads of blood tests, bone marrow biopsies and finally being referred to a consultant who specialised in systemic mastocystosis systemic mastocystosis was not ruled out, instead I was diagnosed with it in October 2019. It made sense of why I had felt incredibly unwell for so long and in so many different parts of my body.
Over the last four years, I have discovered certain things that will instantly cause reactions. When I say reaction what I mean is that my heart starts racing (140-160 beats a minutes, breathlessness, hives, dizzyness and then extreme tiredness). I have discovered that exercise (changing body-temperature), sitting out in the sun for any length, swimming pools (even being in the vacinity of one) and water (challenging) all cause me to react. This has proved incredibly challenging. I have had to accept that I can’t run or go to exercise classes, I can’t go on pool-side holidays and I can’t luxuriate in a bath. I have also had to accept the permanent rash. I have a permanent rash covering both thighs and on a daily basis the rest of my body will come up in hives. It isn’t pretty and I used to wear trousers all the time because I hated it so much, but recently, I have started to wear shorts! I have had to accept that I need to take 20 – 30 tablets a day just so that I am able to function but I still have daily reactions and can’t go anywhere without anti-histamines and my epi-pen.
I didn’t want to have a rare incurable disease but in accepting that I do, it has brought me a great deal of peace. I chose to resign from my headship and put my health first – stress and mastocystosis don’t go well together. I am now teaching again and living my life gently – more gently than I think I ever have done and with that I have contentment. George Orwell was right:
“Happiness can exist only in acceptance.”