MY DIAGNOSIS STORY

As today is April 13th and 11 years since I was diagnosed with ME, I thought I’d mark the occasion by publishing my blog.

Those who know me well will probably know some of the things that I write in it. Honestly it’s quite difficult to write because I have so much to say! 

The whole premise however is to inform and educate, because that’s the biggest challenge for ME. People don’t know what it is, or they have a very outdated understanding of it. And very often people with ME are not believed.

So here is my story, starting with my diagnosis.

 April 13th 2013, the day I was diagnosed with ME, and, the day my life changed forever. Although I didn’t know that would be the case at the time.

Being a nurse from the age of 18, and also for the previous 20+ years, (latterly a lecturer teaching nursing), I had a very dated view on what ME was. In fact I told my consultant, “Don’t be silly, that’s Yuppie Flu” …. I left his office 20 minutes later with a very different view, and a lot of research to do.

My ME was diagnosed by exclusion - all tests normal. 

To me this was quite a misnomer - I was convinced my thyroid was to blame. 

It was also a big deal because there was no definitive test for ME. It was as if the medical world had let me down. 

And as well as no test, the next all consuming blow was, “There’s no treatment or cure”. Which for me, who had given my whole working life to the NHS and looking after people, making them better ….. it just seemed like I had been given a massive blow. I admit that in my career I had worked, and taught, mostly in surgical medicine which generally was about getting people better. Of course I knew about the medical side and chronic illness, terminal illness etc. it just wasn’t something that I expected to happen to me as a woman at the end of her 40’s. 

But no treatment?  What now?

I had found myself seeing an excellent medical consultant specialist in Thyroid disease because I had not made the expected recovery after gallbladder surgery. Fortunately I had access to private health insurance via my husband’s job, so I could get seen very quickly, and get back to my normal life.

Being a busy working Mum with a full on job, (Lecturer in Nursing), family (husband, 2 children and a dog) with a busy life outside of work and my father with terminal cancer and needing to support my parents, I didn’t have time to be ill.

The gallbladder surgery at the end of 2012 was straightforward and successful. But I could not get my mojo back. I felt like I was “swimming through treacle”.

I’d already hit menopause and was successfully taking HRT, and yes work was stressful, as was having my Dad fighting Cancer, but the unending fatigue was horrific. Coupled with brain fog (not remembering the names of my students or even what came next in a lecture I had delivered many times), missed appointments, falling asleep during phone calls and other strange things I was really struggling trying to cover everything up and pretend all was normal, because clearly it wasn’t.

I will write another time about the myriad of symptoms that are present with ME. But I did naively think that once I had my diagnosis, the NHS and my GP would roll into action with support , assistance and answers.

I could not have been more wrong.