Jan's ME Story

Jan’s Story
When I can, I make bespoke silver jewellery. It’s my happy fix.
6 years ago I was fit and healthy, with an active social life and several craft projects on the go. I loved going out and meeting up with friends for a bit of shopping, and I thoroughly enjoyed my job. Two weeks before my daughter’s wedding I went down with a virus infection, that I just couldn’t shake off. I had to give up swimming my 40 plus lengths 3 to 4 times a week. I had no energy and couldn’t breathe properly with a constant cough, sore throat, and had all the flu like symptoms of heavy lead muscles, rusty joints and constant headaches, to name a few. Welcome aboard the GP/Specialist Express!
I can’t remember all the Doctors, I do remember all the blood that was taken. All results came back negative & one specialist told me to see a psychologist as it was all in my head! Then in early 2013 a specialist in London diagnosed a genetic immune problem and referred me to a lung specialist for the cough. Later that year I was diagnosed with Bronchiectasis, my lungs damaged due to the persistent infections. Diagnosis was a huge relief, as now they could treat it and make me feel better. I initially responded well to the huge doses of antibiotics and the cough went away, but I felt worse. Within 2 to 3 weeks of stopping the antibiotics, I would get another lung infection. Back on the Specialist Express, more hospitals and tests – again all negative. In 2014 I was finally prescribed 2 different antibiotics for long term use. Although they generally keep the lung infections at bay they tend to emphasise all the other symptoms. Late in 2015 I was also diagnosed with ME (Myalgic Encephalopathy).
I now manage my diseases. I am fortunate that for now I can still work full time, though some days, weeks it is really tough going. Weekends are for recovery, so I can go back to work on Monday. I have a great job, working with good people and it gets me out of bed in the mornings. When I have a tiny bit of extra energy I make bespoke silver jewellery. I set myself goals and work from piece to piece. I still enjoy visits with family and friends, just not as often, as I find it quite exhausting. It’s all about managing my energy – if I do this activity, I won’t have the energy to do something else.
Laughter helps me deal with the pain. I am thankful my life is relatively good, there are many people out there who are far worse off.
Jan