This is a photo that my husband took me of this afternoon. Lying in a darkened room, wearing an eye mask because even the light coming through the curtains was intolerable. I’m wearing headphones and listening to wave sounds because my wee neighbour is bouncing outside on her trampoline and the noise of it is painful. I was nauseous, experiencing muscle spasms, pain and feeling too weak to sit up or hold up my head. I wanted to share this photo in the interest of honesty and openness. We’re all very guilty of carefully curating the image we present on social media, me included. I started my blog because I wanted to share the realities of living with M.E, to help raise awareness. I must admit, I still don’t like being too negative so I often try to downplay things or sugar coat them, which kind of goes against my reasons for starting this whole thing in the first place. I want people to truly understand what this illness is. So, today I wanted to share this little dose of reality with everyone. Yesterday I went to yoga. It’s a class that is specifically for people with mild - moderate M.E. It’s all very gentle, done either lying down or sitting. Then I rested all afternoon, before watching Eurovision in the evening. That’s it. Didn’t run a 10k, didn’t do any heavy lifting, didn’t go out drinking til 3am. Just gentle yoga and Eurovision. I know that lots of the people following me on social media also suffer with M.E or other chronic illnesses themselves, so they will know exactly what I mean when I say I crashed. This afternoon I crashed hard. It’s actually the first time in a while that this has happened to this extreme, and the worst of it passed quite quickly. That didn’t really make it any less unpleasant at the time unfortunately. The truth is, we never really feel well. I honestly don’t actually remember what it’s like to feel 100% well anymore, it’s been that long. We have days that are better than others and days that are worse. When you do see us, it’s because we’re having a better than usual day and we’ve more than likely spent days carefully resting, in anticipation of spending time with you. When we do see you we, like everyone, like to put our best foot forward. We do our hair and make up, we smile and laugh and enjoy feeling normal for an hour or two. But we’re smiling through fatigue and pain, and all the while trying to keep a check on how much energy we’re expending so that we can try to temper the payback later. The horrible bit that no one else sees.
To my healthy friends and family, I know it’s sometimes hard to truly get what we mean when we talk about payback, or what a ‘crash’ looks like.
This is it.