Twelve years ago if you had asked me what E.T stood for I probably, like many others would have replied “A funny alien on a bicycle!”
Like so many sufferers I had been unwell for a while, even as a nursing sister I did not recognise my symptoms. Endless night sweats were an early Menopause, severe tiredness was over work, persistent awful headaches were because of the tiredness!
Even two bouts of pneumonia, both requiring hospitalisation I put down to bad luck.
In 2002 a dream holiday in Tobago turned into a nightmare when I contracted Salmonella, I was ill for months and eventually paid for a BUPA health assessment. Within 20 minutes a medical officer called me in to say that my Platelet count was 980 and was I aware of any haematological disorder. I went directly to my GP practice and saw a locum who told me that it was only a side effect of the Salmonella, when I argued that I really was feeling unwell he told me to “Get a life”
Luckily, my own excellent GP saw the results the next day and by that afternoon I was having a bone marrow biopsy.
The rest as they say is history. Twelve years on I have a well controlled disease.
Living with ET is not easy, I am lucky that my son was 16 when I was diagnosed, I was able to reduce my work hours to part time and have a very supportive husband who knows the condition as well as i do.
There have been difficulties with the drug treatments, Interferon did not work for me at all and resulted in a nine month more intense drug treatment of busulphan. Hydroxycarbamide works well but causes awful blisters in my mouth, nose and feet and I occasionally need a break from it.
Without doubt, tiredness for me is the worst symptom, followed by the blisters. I call the tiredness “bone weary tiredness” and just simply have to go to bed and sleep. Pacing your self with work and activities really is the answer. The blisters are just a nuisance and require time and soft food.
Of all the MP Diseases I would say that this is the one to have, it is controllable, liveable and with the least side effects in my opinion.
I am lucky that I attend a fantastic haematology unit in Shrewsbury under the care of a first class haematologist.
Finally, I do try to do what I can to keep my self well. Keeping my weight down, walking every day, careful with my diet with lots of fresh vegetables and fruit, after all, although I have ET I am still prone to all the other life threating diseases and sticky platelets do not help!