Living With An Invisible Illness: M.E / Chronic Fatigue Syndrome

Is getting tired without doing anything considered a talent? Oh, how I wish that was a joke.

This blog post has been a particularly hard one for me to get stuck into and write, which is exactly why I feel the need to stick at it and type away. It's something I've been wanting to blog about for some time now after being heavily inspired by others online. It's a topic I've always hated talking about, let alone telling other people that I suffer with it. I've always worried about people judging me and not understanding so I tend to keep it to myself as best as I can, however, I've realised this is something I need to change, not only within myself but in the hope to help others as I wish there was more awareness around the topic.

Today I'm talking about an invisible, chronic illness which is; Myalgic Encephalomyelitis. Yep, that is a legitimate illness and I bet you didn't try to pronounce that one in your head since it sounds familiar to supercalifragilisticexpialidocious. Even for someone who has been diagnosed for a good six years now, I still had to google the diagnosis name and spelling. But, in simpler terms, it's referred to as M.E and it's also known as Chronic Fatigue Syndrome (CFS).  So, if you're not familiar with these diagnosis names at this stage, frankly I don't blame you because when I was first in the hospital and was diagnosed, I didn't have a clue what this meant, or what the heck it stood for. Honestly, I thought my doctor was speaking some form of Spanish to me. 

So what is M.E?

This is one of the most dreaded questions I get asked too often, which honestly, my response mechanism is to start off laughing followed by the question; how long have you got? When in reality my body is internally crying. Ok, so I'm sure we've all done it, we've plugged in our battery dead phone to charge up over night before going to bed, only to wake up and realise we didn't flick the switch on, or we didn't plug it in properly and instead of seeing that green 100% battery, we're slapped in the face with a 8% charge. This is what it's like waking up with M.E, you're never fully charged. But, it doesn't matter how many times you plug it in to charge, because you have a faulty battery and your phone is broken, buddy you're screwed. 

What are the symptoms?

M.E  affects your day-to-day life, severely.  It's like having the flu whilst being intoxicated 24/7. Oh, and you've just ran a marathon. Fatigue isn't tiredness, it's a whole different level, it's physical and mental exhaustion.  On bad days, general fatigue can be so bad that you need to take a twenty-minute rest after having a ten-minute shower. Pain is also another big symptom, muscular pain and joint pain, yay a two in one.  Not to mention the crippling headaches, dizziness and brain fog, sorry what was that again?

When you're tired, you sleep and you wake up feeling refreshed. But, for someone with M.E, this is an absolute myth. You can also be so tired that you can't physically move and all you want to do is sleep, yet you're good old friend insomnia decides to get back in touch and pay a kind visit. Sensitivity to light, noise, alcohol and food also play a lovely role in the long list of symptoms. And last, but certainly not least, it's hard to control your body temperature, it may be nineteen degrees outside but my dressing gown is still my friend. 

You also have to pace yourself and plan your day to day tasks waaay in advance. For instants, if I have a big event coming up, or simply having a meal out with some friends, or even going up to London for a hospital appointment, I have to plan how my body is going to cope before, let alone after. The day prior I will have to rest and keep my agenda to the minimum in order for me to manage the day ahead, have enough energy and generally feel well enough. Then you get the aftermath of feeling absolutely awful and having to spend the next two days recharging yourself. It's a never ending circle. 

One of the worst factors is the underlying unknown. It's always there, lingering in the back ground, even on good days. You can be having a great time socialising with your friends, but it's only a matter of time before your body starts to break down inside. Don't get me wrong, you have good days and bad days. But, you can be doing really really well yet, the bad days are always lingering and on the way to chase up on you. 

Truths...

As much as I've struggled over the years with not only coming to terms with this illness and how to cope, pace and generally get through each day, I've finally almost come to terms with accepting it and I'm no longer worried about telling people and being scared that they'll judge me for it and won't understand. Like I said, I would never want sympathy from anyone and this is definitely not why I wrote this post. But personally as a M.E sufferer, people suffering aren't seeking the sympathy card, we're seeking a little understanding and validation surrounding the illness. 

If you've read this post then thank you and I hope you now have a little understanding about this illness. If you have any questions, are a suffer yourself or know anyone who is, then feel more than welcome to get in touch :) 

Gem
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