Monday, 12 May 2014

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


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    1. Thank you for writing Elaine and so glad I will no longer be lonely on the OAP bench. Not that we can sit here for long as there is much to do. We cannot retire until all ME patients are treated with compassion, understanding and effective treatments by GPs and consultants. We have work to do! Thank you for all you have done to date for individual ME patients.

  2. Yes, Thank you for he support you have given me Elaine via the forum