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Wednesday, 12 October 2016

Seven incredibly important things every ME sufferer wants you to know


If you've been loyally following my blog for a while, then you may be aware that I suffer from a chronic illness called ME/CFS (Chronic Fatigue Syndrome). It's estimated that around 250,000 people in the UK also suffer from this debilitating illness too.


Although ME is a relatively common illness it's surprising just how many people still don't know exactly what ME is, and how it can affect people. 


Damaging comments like this for example are still being made on a daily basis, these can come from anybody from a family member, to a somebody you used to go to school with. To a person battling with their health day in, day out these type of outdated opinions can be both upsetting, and extremely frustrating. 

So, to shake this 'you're just lazy' label once and for all here are seven incredibly important things that people with ME want you to know... 

1.) It's not just 'feeling a bit tired' like the name Chronic Fatigue Syndrome suggests

Sure, we do feel extremely fatigued and exhausted, but believe me when I say ME throws an arm length list of symptoms at you- we're talking countless ailments here. From dizziness to swollen glands, you can read the list of symptoms in more depth here, if you wish. 

I'd also just like to mention the fact that when we say we're 'tired' it's definitely not in the same context as 'oh today was a long day at work, I can't wait to get into bed'. The fatigue is crippling, it's almost indescribable- the exhaustion takes over that much that you're often left unable to move, talk and focus properly. 

The most accurate comparison would be; you've just ran a marathon, with the flu and a hangover. 

2.) We are the very opposite of lazy 

The term 'lazy' often gets thrown about when you mention the fact you suffer from ME. To your everyday average, 'healthy' human, I guess saying that you don't have a job/go to college etc, and you stay at home in bed all day seems like the dream life. 

It's not. In fact it's so far from the dream it's unreal! We aren't lazy at all, we don't choose to stay in and not participate in daily life- there's nothing we want more than to go out and have a job and a normal life. 

Chilling out on the sofa whilst watching back to back episodes on Netflix, aren't an every day occurrence for us, believe me. 


3.) If a person with ME has a 'good' day, it doesn't mean they no longer have ME 

Another very misunderstood aspect of ME is the 'good day', 'bad day' side to the illness. To explain this very briefly all this means is that on a 'good' day you perhaps won't be suffering as bad as you normally would, the symptoms are very much still there but you can push on and make the most of this and maybe have a day out. 

A 'bad day' means that a sufferer will spend all day in bed feeling extremely unwell, unable to much at all- your usual symptoms are exasperated 100x more on these days. So yes, even though we can have better days that unfortunately doesn't mean that we will be able to go out everyday.And the days we do manage to get out of the house have probably took a lot of resting beforehand to be able to do so. Always bare this in mind, if we did something last week for instance we maybe won't be able to do that again the next week- everyday is different! 

4.) Just because we don't always talk about it doesn't mean we aren't still suffering on a daily basis 

I happen to be the prime example for this particular point. I've always kept a lot back when it comes to my illness. For instance when I'm feeling awful there's a 99% chance that I won't utter a word about it. I simply carry on! 

Half of the time we really are award winning Oscar standard when it comes to acting like we're okay. However this doesn't mean that we actually feel okay, more often than not I'll go above and beyond just to ensure people think I'm fine. My social media accounts prove this, you'd never suspect a thing if I hadn't mentioned I have ME on my blog. 

The trouble lies here; you share too little and people assume you're now miraculously better, on the flip side, share too much and you come across as a hypochondriac that loves the lime light. To put it simply, you can't really win! 

5.) Looking well doesn't equal feeling well... we only wish

ME is an invisible illness which means that sufferers look perfectly fine and healthy... although sometimes I beg to differ as without makeup I resemble a zombie. 

This means that people are unaware of just how poorly we are/feel as we look just like any other person. You don't have to look ill, to be ill. 


6.) There are no cures. Eating clean, exercising and what not won't miraculously 'cure' us

Right now there are no cures for ME, hopefully one day in the near future that will change but at this moment in time we can only try to manage our condition and the symptoms that come along with it. 

Suggesting things such 'you just need to get out more' or 'have you tried *insert the following, here* exercising, eating healthier and so on' are no help at all. Exercise made me 100x worse, and that's coming from somebody who loved going out and keeping active- we really aren't gym shy, despite what some may say. 

7.) No two people suffer in the same way

You may not know that theres different severities of ME, they determine how much you suffer! There's three categories and they are; mild, moderate and severe- it's important to point out that some people may not fit into just one category or you could be bang in the middle of two. 

For example you may know two people who suffer with ME and it's more than likely that they'll suffer in unique ways- no two people have exactly the same list of symptoms and the severity of the symptoms will differ as well. This just means that one person may be able to do more than another sufferer but this in no way means that just because you're able to do more it doesn't effect your life- it 100% does. 

Thank you so much if you've made it to the bottom, round of applause for you. I hope that you now understand a little bit more about this debilitating condition- if you happen to have any questions, don't hesitate to ask me! 

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