While I am making incredible progress I feel it is important to remind you that I am still so very poorly and so far from a normal, healthy life as society sees it.
You might remember that I managed a little holiday this Summer. Well, while we were away in Cromer at the end of August, Mr Tree Surgeon and I had our worst M.E. experience to date. In fact it was so awful that I’d say I’ve only felt more ill and more scared once since my M.E. journey began.
We were staying in a bed and breakfast (found on Airbnb) and being in someone else’s house is not my preferred place to have had such a ‘turn’.
We had travelled the just-under-two-hour journey on the Friday, checked into our room, rested for a good hour, and then wandered the 100 metres to the village pub for something to eat that evening.
On the shuffle home I was really struggling to make my legs move enough to put one foot in front of the other. We had to stop every few metres or so. Nothing new there. Just the standard exhaustion, muscle pain, extreme fatigue. But when I finally made it up to our room and curled up on the bed things seemed to change.
I have had trouble regulating my temperature properly since having M.E. But this was on another level. I felt cold but my skin was boiling hot, sweaty and bright red.
I could not move at all or speak, and it was a different feeling to that of the temporary paralysis I have come to normalise. I had an incredible urge to vomit but couldn’t.
My body seemed to completely shut down. It had somehow become overloaded and the system just stopped working. I wonder now if it was just a classic case of sensory overload. People struggle with getting their head around that idea: sensory overload. I simply mean that there were too many things for my body to take in that day – moving images during the drive, the noise of the car and the ‘quiet’ pub, new smells in the B&B, sitting upright for too long… All these things sound silly and far fetched but they affect my incredibly sensitive body now.
It lasted what seemed like hours despite my attempts at remaining calm so as not to exacerbate the situation. With cold makeshift flannels on my forehead and wrists, made from Mr Tree Surgeon’s (hopefully) clean socks my body temperature started to sort itself out.
The next day I was strangely functional but very aware of the previous evening and somewhat scared of the lack of control I had had over my own body and the situation.
I feel it is important to share this side of my life with you. How else can I expect you to understand the severity and complexity of my health condition? So there isn’t all that much information here, and little you can do, but on the days when you feel confused about how I can manage to do one thing but not another, I think it’s good for us all to be reminded that my health can dip at any time. And it does. You’re just lucky enough that you don’t have to witness it when it happens.