M.E awareness day!

Today, as I'm sure most of you know is M.E awareness day. This week I have had my thoughts focused mainly on two aspects of the illness, and not in anyway the symptoms. More on the public perception of the disease. I have discussed with people, read about and watched videos, all surrounding the same two issues. The invisibility of the illness and things that people say to sufferers, mainly in ignorance, and sometimes (thankfully rarely) to be intentionally malicious. So this is what I have decided to write about today.

Let, me just say this, when you see people with M.E or any other invisible illness, you usually only see the mask. The mask that most people show you will be smiling, looking relatively "normal" whilst inside they could be and probably are feeling far from it. They will try to present themselves as happy and positive, not really letting on at how they are physically feeling. This is the case for me personally, and for many other people I know. Just because we don't look ill doesn't mean we aren't and just because we try not to act sick doesn't mean we don't feel it. On the other hand, just because we are unwell doesn't mean we have to or want to look it and just because we are ill doesn't mean we have to act it. These are all to often society's misinformed assumptions, if you're sick you should look and act it. You shouldn't be a happy, smiling, positive person. You must instead, look horrendous, play the invalid, cry, frown and be depressed. I am in no way implying that this is the opinion held by most, but it is unfortunately (and I have personally experienced this) the opinion of a delusional few. These people are the reason for this blog, these people are the reason I try hard to raise awareness as it is normally through ignorance that these opinions are formed. It is this reason that M.E awareness week is SO important, to show the truth, and hopefully, in turn, be a little better understood. I was linked to this video, produced by a young M.E sufferer that combines both of the above issues, but especially illustrates this mask worn by many sufferers. So here it is, and a big thank you to Poppy, who is just 13 years old.

Personally, here is my mask, that face I like the world to see:

And here's the truth:

The other point I have been thinking about a lot lately is things that are said to sufferers. I honestly believe in my time with this illness that I have heard them all, possibly more and if I haven't I would be exceptionally shocked! Some examples include:

• "Well, you don't look ill" (Good! Who wants to look ill?)
• "Oh, M.E? Isn't that CFS, that thing that makes you feel a bit tired isn't it?" (No, not always, and a BIT tired, like diving in a swimming pool makes you a "tad" wet!)
• "My (enter obscure relatives name here) had that, she/he's fine now!" (Really? Oh well good for them). 
• "Have you tried the lightning process/acupuncture/massage/positive thinking/hanging upside down from your ceiling like a bat?" (Okay, so I haven't really heard that last one) (Oh, and I've tried them all, they didn't work for me, imagine that!).
• "You just need to pull yourself together!" (Well hell, I hadn't even thought of that, I'll get right on it, note the sarcasm).
• "You should try CBT or GET, my aunt's a doctor and she said that's what she recommends!" (I have tried both, CBT didn't work, GET made me worse, be sure to tell your aunt that!).
• "You should go on a holiday, somewhere hot, sunshine and holidays always make me feel better!" (So, are you paying?)
• "You get to stay in bed all day, I'd love that! You're so lucky!" (Seriously? It's not like I'm lying there watching TV, or reading, would you choose to be stuck in bed for years at a time? Soon looses it's "joy").
• "What? You're still ill? It's like you've been unwell forever" (Tell me about it!)
• "You can't feel like that all the time!" (Nope, sometimes I feel worse!)
• "Is there nothing you can do? Nothing you're not allergic to?" (Yes, there are things I can do, it just takes time, equipment and lots and lots of planning. Plenty, although sometimes even I wonder!)
• "You can't come out again/ you're going home early again" (I wanted to come out but strangely enough as I'm sick and my illness varies the two weeks I spent resting to come out for an hour simply wasn't enough, and I thought it was the thought that counted. Yes, I am going home early "again" it took weeks of resting and will take weeks of recovering just for me to be here for this long!).

So, next time you see us don't offer advice, just ask us how we are, ask us questions, we don't mind. Talk to us about your life, tell us funny stories about your kids and your pets, make us laugh. Most importantly, think about us when we are not there, as often that is when we need kind thoughts the most. Send us a text or an email, without expecting a reply. It will make us smile, even if it has to be read to us. 

Here is a video highlighting these very important things, thank you to Becki Luscombe for making this awesome vid! 

That's all for today folks, this entry took me a long time to write but was worth it as it is SUCH an important issue, let's raise awareness and stomp out ignorance.