Behind the smile

Over the last four years I have made incredible progress and I am finally starting to regain some independence. This is wonderful! Alas, this improvement is causing confusion. I am NOT recovered. For a start, I started writing this post in December and am only now managing to finish it off…

I am a little bit better though, or at least I’m choosing to believe that. Perhaps I don’t do anyone any favours because, when asked how I am I will never respond with a list of symptoms. Instead I say “not too bad” or “I’m okay” because I truly believe that I am. My ‘okay’ and yours are just worlds apart.

It wouldn’t be healthy to dwell on the awfulness that I experience everyday. Luckily for me it is in my nature to seek out the good things. But perhaps, just for today, I need to be honest with you about what is going on behind my smile…

Behind the smile (photo taken in Decemeber 2014 when I started working on this post. Each one takes a fair while…


So at this precise moment in time I have intense pain in my knees. My left knee cap feels like someone is scraping something along it. My eyes are so heavy they are only half open. I have a headache. There is a shooting pain going up with left thigh every now and then. My blood feels cold. I’m pretty sure I can actually feel it rushing through my veins. I am dizzy. The room is spinning. I cannot see as ‘well’ as I usually can. Everything is that little bit more fuzzy and out of focus. My throat is dry. I feel like I can’t get enough air into my lungs. There is the feeling that a load of ants are crawling around at the front of my skull. I have tinnitus. My hands and feet are freezing. My face is boiling. My heart beat is making my body move to its rhythm. I have palpitations here and there. I feel nauseous and have no appetite…but if I don’t eat I will feel even weaker than I already do. I feel like the muscles around my ribs are being pulled off the bone. The fatigue…the only way to describe it is to say it’s ridiculous! I feel anxious because I am home alone. I don’t really know why. Perhaps it’s a comfort thing. Perhaps it’s that I’ve spent days before now sitting on the floor in the hall waiting for someone to come home because I’ve run out of energy on my way to the bathroom… I’m not sure I could get to the front door if someone knocked on it. I can walk but my legs feel as if they are full of concrete.

This is four years in. This is after immense improvement. All this and I have trained myself not to panic; to just be. I have to stay as relaxed as possible. I’ve got used to this now. I don’t feel sad or numb. It’s actually a content day, like the majority of the others. Today there will be no shower or getting my own lunch or leaving the house or catching up with TV. 

So I mean it when I say I cannot yet join you on nights out or stay for more than a few hours at gatherings. I can’t join you at the gym. I cannot go out for walks or days of shopping. I cannot manage weekends away where we all share hotel rooms. Sadly I still have to be regimented with myself about what I do. Trust me when I say that that is the hardest thing I’ve ever had to do. It is never that I don’t want to do something. (Unless it is!) It is that I can’t. Not yet. That is not me doing negative. Save yourself the time and energy of telling me to think positive…

We just have to be patient and hope that things move forward that little bit more. There may well be a relapse and there will most certainly be setbacks, where for a few weeks I will be back to near the beginning. Sadly that is the nature of M.E. And it is never my fault. Please, if you do anything, don’t make me feel like it is.  To question “have you overdone it?” is hurtful. It implies that I am at fault somehow. I am still learning. It still baffles me that to watch TV at the same time as sending an email can be interpreted by my brain as overdoing things.

There will always be post exertional malaise (quite like having a hangover after a big night of drinking, except we suffer after any kind of exertion or activity) because that is essentially what makes M.E. what it is. For most things I do there will be payback. 
This isn’t being published to make you worry about me. Just as when I started M.E. myself and I in 2012, it is essentially to help you understand why I seem to have turned into an anti-social hermit who won’t even answer the phone when you call. 

I have come to accept that this is how life has to be for me. You need to do the same. Hard as it may be, we have to let the Old Anna go…

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