Severe M.E.

M.E. is a neuroimmune disorder which stands for Myalgic Encephalomyelitis.

In the UK M.E. (also known as Chronic Fatigue Syndrome or CFS) affects 250,000 adults including children and young people. M.E ranges in severity from mild, moderate, severe through to very severe. Around 1 in 4 people with M.E are affected severely or very severely.

M.E. affects the whole body and comes with a whole host of symptoms and some people can go on to develop secondary conditions. Here are just some of the symptoms:

M.E. & Me

I first got ill in 2012/2013 after a bad time with the flu despite being vaccinated because of my vulnerability to such infections. In 2013 was when I feel my M.E. began. When I first started to feel symptoms more severely many months later such as difficulty walking, sitting upright for long periods, fatigue etc my GP just kept diagnosing me with 'Post Viral Fatigue Syndrome' and just told me that with rest I’d soon recover, each time I was told this I never did.

Then finally in July 2017 I saw a neurologist in London. Some of my symptoms didn't fit with FND alone. He asked me questions about my fatigue and other symptoms, how much activity I could do before my symptoms worsened and how long did it take me to recover etc. He then went on to say that as well as diagnosing me with FND he also said that I also have M.E.

I went home and had to look up M.E. as it wasn’t explained to me and I had to learn for myself how to live with M.E. By this point my M.E. was moderate but I still needed carers a couple of times a week. But it felt a relief to have a diagnosis and to not blame myself for things like my extreme fatigue and why I struggled so my much with hypersensitivity and PEM.

As time has gone on my M.E has had it's ups and downs but ever so slowly, bit-by-bit my M.E has worsened and my M.E is now considered and classed as being 'severe'. 

M.E. is much more than just 'simply feeling tired'. I experience a wide range of different symptoms all over my body from memory difficulties, brain fog, different types of pain, autonomic issues, Post Exertion Malaise, flu-like symptoms and much more. For me I experience my M.E more as a neuro-immune condition so my immune system is also greatly affected.

I spend most of my day in bed because this is where I can get most comfortable and be able to reposition myself due to my bed being a profiling bed (like the ones you'd find in a hospital); I’m also able to better mange my symptoms laid in bed. Despite this even when I’m resting my pain and fatigue levels are severe and most days any activity leaves me exhausted afterwards. There are so many emotions to go with this.

I have help from PAs/carers to support me with all sorts of tasks from getting washed and dressed to making my meals and drinks, reminding me of things such as my medication and taking me to appointments, social support amongst other things.

When I leave the house, a rarity, I need my wheelchair and someone to push it for me as well as having someone at all time. If I go out I wear my darkest sunglasses and noise cancelling earplugs due to hypersensitivity to light and noise. Leaving the house often take me days to recover and will cause an exacerbation in my symptoms.

I try to turn my experiences into something positive by raising awareness and fundraising. When I’m well enough I make cards to fundraise for M.E. charities - more about my fundraising project. I also have my Instagram account where I raise awareness and I work with M.E. charities on different projects and this blog is part of the M.E. Champion Bloggers project which highlights and recognises that my blog champions raising awareness of M.E.

M.E in the UK

M.E is a greatly misunderstood illness as well as being severely underfunded and researched.

Thankfully NICE have now revised their guidelines for M.E which I hope will improve the way M.E/CFS (Chronic Fatigue Syndrome) is seen and treated by medical professionals.