Sunday 13 May 2018

Me and M.E.

I was formally diagnosed with M.E or Myalgic Encephalopathy which is a neuro-immune condition in July 4th 2017, but I'd been struggling with symptoms for quite a while before.

Having M.E. is like having pertinent flu and your body feels like lead. At times M.E. leaves me housebound or even bed bound when I'm going through a crash (a 'crash' is the term given when you're going through a flare-up in symptoms). When I'm going through a crash there are times when all I am affected by debilitating fatigue and all I can do simply do is sleep in the total darkness with zero noise and noise and light just hurts so much and even the pressure of my body on the bed is painful - simply everything hurts and all I can do is breathe through the pain and keep toped up with pain relief and I use the term pain relief because that all it is, relief from the pain because it doesn't take it away completely.

I live in constant pain despite all the medication I take to manage my symptoms. I live in a haze of brain fog and fatigue. Brain fog is another name for the cognitive dysfunction experienced by people with M.E. it can include symptoms like confusion, forgetfulness, poor short-term memory and difficulty thinking and focussing etc.

Another big symptom is Post Exertion Malaise or PEM for short. PEM is 'payback symptoms' for any physical or cognitive activity and if you don't watch out it can cause a massive crash. PEM can come from going to a Drs appointment or simply washing your hair. Life is a constant balance of pacing yourself to try and reduce PEM as much as possible. Its a constant battle and balance. Sometimes PEM comes on straight away; other times it's delayed and may come on 24-48 hrs after activity.

Each individual case is unique. There are good days and bad day, but in some individuals symptoms are constant. 

In the UK 250,000 people are affected by the condition and 1 in 4 people with M.E. are severely affected.

Alongside the chronic fatigue and pain I experience Chronic Daily Headaches; migraines; cognitive dysfunction; sore throats; fevers; infections; sleep problems; IBS and other digestive issues; pain in my muscles and joints; dizziness; hpersentivity to things like nose, light (I wear tinted lenses to help with my photophobia), touch and small. This is only a small list of my symptoms.

The symptoms intertwine with my other illness so sometimes it's hard to tell what is causing what.

I have good days and bad days and days where I'm a mix of both.
When I leave the house I need someone with me that knows me and my need and often i need my wheelchair as I get too tired easily and it eases the PEM and reduces the amount of pain and tidiness I'll be in afterwards. I also use crutches as my balance isn't great.

I only really leave the house for medical appointments. Every other week I go out with my carers to run errands such as to go to the post office and I'll have a rest when I get back. I do occasionally go on a day out with my family like when we went to Harry Potter Studios, but days like that are few and far between and I'm left with severe PEM and symptoms afterwards.

Despite living with M.E. some professionals still don't believe that the illness exists and believe that it's just a case of feeling tired even tough M.E. is much more complicated that that.

With my other illness alongside the M.E. I've had to give up on so many things. My education; my social life (apart from the times when I can make it to church); even my dreams of a career seem doubtful at times.
Current treatment guidelines for M.E. are poor. The recommendation is CBT and Graded Exercise, however this on;y works in less than 50% of cases and for a percentage of people it makes them worse. Thankfully current treatment guidelines for M.E. are being reviewed.

There is currently no cure for M.E.There is currently no specific test and there is a desperate need for more research into finding better treatments and a cure for M.E.
There is currently no specific test for M.E.; instead it's diagnosed first by trying to rule out other illnesses such as anaemia to see if that's causing the person's tiredness.

Living with M.E. and other illness is hard. I take multiple medications a day to mange my symptoms as best as possible. I pace out my activities and energy levels. I take naps during the day. 

This post has taken me a while to write. As a blogger I plan posts sometimes weeks, even months ahead and I type in small manageable chunks.

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