The side of ME you don't see

I post a lot on social media. The day out I went on, the chocolate cake I made, the latest achievement I've had. But you don't see the whole picture in those posts.

I have M.E.. - Myalgic Encephalomyelitis, aka. Chronic Fatigue Syndrome. It's not a secret, but it's not really something you see in the Facebook posts that result in comments such as "That's amazing" or "Congratulations". You might see a photo of me on Facebook on a day trip to Nottingham or Nantwich, and all looks fine. You can't see a health-related difference between me and the friend next to me in the selfie. But you don't know the impact of that day trip - the consequences that inevitably follow.

I can have a day out with my friends. But the next day, or days, or week, or sometimes even weeks, will require a huge amount of rest to recover from the exertion. I don't post about that on Facebook. I keep that to myself.

You might see I've made a cake - and yes, I do love baking with chocolate. But behind the making of that slice of chocolate cake, a large amount of energy was used. It required me to rest afterwards, and that's even when I took measures such as sitting at the table to bake rather than standing in the kitchen, and putting anaesthetic plasters on my wrists to help with the nerve pain. Baking is fun, but it's not always just "a piece of cake".

And you will never see me post about the more severe after-effects - because sometimes the consequences are worse than just needing rest, and dealing with the muscle and nerve pain. Sometimes it involves having a non-epileptic seizure that no-one really knows anything about. It's my body's way of saying I've overdone it, so it's going to throw a hissy fit, and make everything worse. And there's nothing I can do about it.

I almost had one of these seizures a couple of months ago... at a picnic. Not anything over-the-top, it was simply a picnic on my university campus with some friends I'd been looking forward to seeing. I'd rested all day and thought that a picnic in the evening would be fine. I was wrong. The almost-seizure involved my legs being unable to stop shivering, which destroyed any strength I did have in my legs. And now I'm still recovering from it, and having to use a walking stick if I want to walk for any real distance.

I've had this "invisible illness" for 11 years now - since I was 8 years old. And you learn to live with it. You hide it when you want to, share it with the people who need to know, and discuss it with those you trust not to belittle your feelings. But then, this walking stick threw a curveball my way. It was visible - I couldn't really hide my differences now.

You might be wondering why I'm sharing all of these previously hidden facts and thoughts and feelings now, when the title of this article is 'The side of ME you don't see". Well, the fact you don't see it is exactly why I want you to. As July is 'Disability Pride Month', I believe now is the time to shine the spotlight on this side of ME. I want you to know that not everything you see on social media is as easy as it seems, not every picture is simply a slice of cake, and behind each smiling selfie, something more may be going on. But this is not a weakness on my part, it's a strength. That I can survive the unseen side, and still come out smiling on the other side.

We tell people not to judge a book by it's cover. Well, I also think we shouldn't judge a person by their online presence, as this is just the highlight reel they want to share with the world. Because life isn't all just chocolate cake and selfies. There's a real person behind that account, and you have no idea what they've decided not to post about online.

It can be so easy to become jealous other people's seemingly perfect lives. But we cannot live like that, because they're not telling you the whole story, and you cannot see what is going on behind the scenes.

Someone commented on a photo of a cake I made for my mum's birthday "Is there anything you can't do?". The answer is yes, there's a lot I can't do. It's just that I haven't posted my failures or shortcomings online.