Guest Post from Elaine Stammers - My ME Story

My ME story

In 2005 I began an unpleasant autoimmune illness called Lichen Planus and while covered in itchy spots for months, I began to feel run down and excessively tired. I was in the middle of a terrible stressful life event which went on for 5 years. So began the point that I think of as the start of my own personal journey with ME. In fact looking back I can point to at least 5 years before becoming aware of a poor immune system, and even further back being diagnosed hypothyroid. I can see other markers on the way further back still.

Now 9 years on from the Lichen Planus outbreak, my journey with ME has taken me through various points both up and down. I was able to start a new part time job in 2007, but in 2009 after a serious eye op produced a relapse, followed by a worse relapse less than a year later after catching whooping cough, I felt unable to return to the busy working environment and have never been back to work since.

I have spent 4 years trying out various approaches to getting better, and some have helped, though none so far has transformed things for me in a reliable way. The nature of ME is that it fluctuates and that I find the hardest part to live with. Some of it is now managed better, especially my severe food intolerances – and eating differently has improved my migraines too. However I still have immune dysfunction and get frequent cold viruses that really drag me down, and give me setbacks. I feel I have come to the end of things I want to try out though, and much of the treatment has been private, and therefore expensive.

I am very lucky that I have my 62nd birthday in June, and therefore I will get my State Pension later this year. I feel that the benefit changes have affected so many people with ME for the worse, though even in that I have been lucky to stay in the ESA Support Group for the last few years while I have tried to recover. I learned a lot about the benefits system, and spent 3 years helping and advising other people to navigate their way through, via an online support forum. If I had been pushed by anyone to prepare for work again, then I fear it would have been another relapse both mental and physical. It isn’t that I didn’t want to work, but much of the stress I had before I was diagnosed was caused by the Jobcentre process and that is much worse now for people with the sanctions policy.

by Elaine Stammers

for #May12BlogBomb

Image by Wendy Boutilier