Going Blue For M.E Awareness Day!

As you may know May the 12th is Myalgic Encephalopathy (or M.E for short) awareness day, it's hardly known within society or even within the medical circles and that why people need to talk about it. I'm guessing most people would've learned about Florence Nightingale but not many people know that she suffered from M.E and was bedbound and housebound for numerous years. Her birthday was the 12th of May so in remembrance the M.E Awareness date was decided on that day.  It affects 250,00 in the UK alone. Its an is invisible illness so the person you smiled too in town or the person who served you at the shop could have it. The thing with M.E is that a few people can lead a normal life, they have to manage their symptoms but can have it under control while on the other end people are bedbound that cant sit up, feed themselves or talk. Even though people can 'recover' the likeness of doing so is slim, there's is no medication or medical procedure to cure or help, only painkillers and pacing to help deal with the symptoms. M.E has little research so is misunderstood and mistreated, awareness is needed to try and get the funding it deserves.

M.E is a neurological disorder which affects the central nervous system, this controls everything that happens in your body. Its persistent fatigue that hardly improves with rest and causes cognitive dysfunction such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing. It causes typical flu like symptoms,nerve pain, IBS, sensory overload, unregulated temperature regulation, joint/muscle pain and exacerbated symptoms at mental and physical exertion. It can also cause paralysis of the complete body, legs arm, face and even stomach, it can cause people to have seizures and the symptoms go on and on.  The fatigue is like you haven't slept for a days, you can sleep all day and feel exactly the same, the thing you wouldn't expect is the crazy insomnia. This Buzzfeed video explains what happens when you're deprived of sleep, M.E acts like you haven't slept in days.

Its best described as a phone battery, a normal person can sleep for a night and wake up refreshed and fill up the battery. A person with M.E has a broken battery, I doesn't matter how much you sleep it won't make the broken battery fixed, a lot of the battery is used up with normal bodily functions like breathing and sight. The amount of energy differs per person. Some people believe exercise can cure M.E but that'll be like playing a game with low battery, it's not going make you have more battery but it will drain it faster. Most peoples symptoms will deteriorate if this is attempted. The current NICE guidelines are detrimental to a person's conditions, they recommended graded exercise and need a complete overhaul but need the funding to do this.
 In reference to the photo people with severe M.E dont have enough energy for their essential needs so often are paralyzed, tube fed, bedbound and housebound.

Personally I cant work, cant go to university, my friendship circle is very small (do my pets count?), I rarely leave the house, struggle to keep on top of hygiene needs and hardly can make food for myself. Before M.E I was the most stubborn person, I wouldn't let anything stop me, even after 5 major operations I still picked myself and carried on. It was often joked that even after my major operations I would still do more work than a 'healthy' person. I was also a perfectionist, I wouldn't stop till something was perfect in my eyes. Anybody can get M.E, some people wake up with it while others never recover from an illness like a cold or flu. Most people say that M.E is exactly like having the flu, you absolutely feel like shit. There's actually a few people who have had cancer and chemo and say M.E is so so much worse. 
M.E destroys lives.

I cant remember when I first got diagnosed, I felt so poorly and felt spaced out and the pain in my muscles and joints was uncontrollable, it is a complete haze. At the moment my pain is so much better but it's the major cognitive problems that are the worse at the moment (as well as the extreme fatigue). I have chance to be in the moment for a while but as soon as the fatigue hits it been described as if my eyes just glaze over and I'm no longer there. I cant go out on my own and have to be closely supervised, my boyfriend is regularly pulling me from walking into roads in front of traffic and stopping me walking into obstacles in my way (such as roadworks/shop stands etc) that I dont process. My Mum and Boyfriend help me communicate and try and decipher my words that aren't actually words or make sense. I sort of go into a bubble, I dont process things around me and get overwhelmed very quickly. Even when I'm 'well' I cant process things in time, I could see somebody I know and not acknowledge them at all.

Everything is affected, firstly my face becomes partially paralysed, my vision blurs so much I cant take anything in and get disorientated by any noise or lights, my spacial awareness disappears and my mind become so jumbled I can't speak properly, take any information in and my memory completely goes. After this I start to crash and need to lie down, sometimes sleep and cant do anything for days after, I cant leave my bed or sofa. Daily I cant read more then a few lines, cant concentrate on programs/films and loads more but what has it helped? I appreciate the little things such as watching my chickens goof around, I love to watch the wildbirds come into my garden and when i'm having a good day I'm so so grateful for what I can do, the moments you can do something it make it's so much more special. I'm so lucky for the things I'm capable for and  can appreciate everyday as M.E is a very unpredictable, you never know if you're going to wake up the next day not able to leave your bed or even if you're going to improve slowly.

The most important thing to remember is we are not lazy, it takes twice as much energy to do half the amount of work. This is a illness that seems invisible, is underfunded and deserves to be known about for all the people that are hidden in there houses, confined to their beds, this is a real illness and destroys lives so please spread awareness.  

For more information please look at
 M.E Research
M.E Blog Bomb
BT More Than Just Fatigue.
Huffingtonpost, Living with mel
Huffingtonpost Laura Roche
Huffingtonpost Kayleigh Bell

Thank you so much for reading! It's taken me a while to write it so it may be a bit jumbled but please leave links down below for your blog posts or favourite M.E websites and I'll add them to the post  😃

Devon x


No comments