Jan's ME Story

Jan’s Story
When I can, I make bespoke silver jewellery. It’s my happy fix.
Jewellery6 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.
Can't brain today

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on reddit
Share on email