May is M.E awareness month and the 12th May specifically marks M.E awareness day.
Those of you who aren’t from the chronic illness community are probably wondering what M.E is and I wouldn’t blame you. Up until around 3 years ago I hadn’t heard of it either- it was only when I fell ill myself 4 years ago that I came to know about M.E; a very misunderstood, little talked about illness.
M.E stands for Myalgic Encephalomyelitis. These 2 words can be broken down into the following:
Encephalo→ Brain myel→Spinal Cord itis→Inflammation
M.E is a chronic neurological condition that causes a multitude of symptoms affecting the entire body. M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide. The condition has a spectrum of severities ranging from mild to severe all of which are life altering.The effects of ME are devastating enough to leave 25% of patients housebound or bedbound.
Some of the symptoms include:
- Post-Exertional Malaise (PEM)- a reduction in functioning and a severe worsening of symptoms after even minimal physical or cognitive exertion also known as “payback”
- Unrefreshing sleep
- Muscle and joint pain
- Brain fog
- Sensory sensitivities to light/ sound/ touch
- Ongoing flu like symptoms
- Orthostatic intolerance
- Temperature regulation issues
At this moment in time there is no known cure or effective treatment for M.E.
Here is a little insight into what the last 4 years have looked like for me, whilst living with M.E.
4 years since M.E began to creep it’s way in. Just a little more tired, going to bed a little earlier, a couple more headaches, aches and pains. Not noticeable really until you look back, with hindsight and gained knowledge. That was M.E making its bed in my bones. Moving in silently, making my body its home.
For a year what we now know to be M.E lay pretty stagnant. Rearing its head only on occasion, in stressful times, like exams. Or if I caught a bug of some sort, it was always harder to shake off. But nothing a few days of rest couldn’t set right.
A low profile M.E maintained until 3 years ago today. M.E reared its head once more but this time it was different. Debilitating fatigue, unrelenting dizziness, sensory sensitivity and excruciating pain soon became part of everyday life. No amount of sleep could lift the exhaustion that plagued every part of my body.
Countless A&E visits, Doctors appointments and hospital referrals followed. Numerous investigations, scans and blood tests completed. All of which came back clear- we breathed a sigh of relief as it meant there was nothing sinister going on. But at the same time it brought us no closer to finding the source of the symptoms I was experiencing.
Throughout the next year my health only declined further. I had stopped all non essential activities and given up hobbies in an attempt to keep up with school. I have been on a part time timetable since year 11, spending a couple of hours in school and rest of the day resting.
In October 2018 I finally got a diagnosis. Myalgic Encephalomyelitis (M.E). One part of me knew it was coming and was relieved to have an answer. The other part of me was all too aware of the fact there wasn’t a lot anyone could do to help, there was no quick fix or medication that could give me my life back.
They call people with M.E the Millions Missing. Missing from society, normal life, from hobbies, social events, school, careers and family time. M.E has come into my life and taken so many things: my independence, confidence and ability to socialise to name a few.
This predominantly invisible disability isn’t so invisible when you look a little harder; the pictures from days out I’m not in, the gatherings with friends I heard about afterwards because they knew I wouldn’t be well enough to go, the wheelchair that gets me through any extended period out the house.
A year and a half on from diagnosis with the help of my specialist team I am learning to cope with M.E, to process the emotions that come with having a chronic illness, place a question mark over your future, to pace better, rest better and do things that matter with the limited energy I have.
Whilst physically not much has changed in the last couple of years. I am more hopeful for a future where M.E and I can coexist happily rather than constantly fighting one another.
We are the Millions Missing
Can you see us now?