For two and a half years my days have mostly centred around having a shower; the build up to it, the actual event and then the aftermath of performing such a strenuous and exhausting task. I talk about showers a lot I think. Sorry!
Recently I changed my routine. Instead of showering in the late morning or afternoon, and then wiping out the rest of my day from the exertion, I’ve started to shower in the evening. Showering in the evening means it’s perfectly okay to crash into bed afterwards. Plus, because it’s nighttime I’m allowed to go to sleep.
I think it helps me sleep too, this change of routine. Hooray! What a genius I am.
The only downside is that the current night sweats are pretty gross and so I could probably do with showering again when I wake up but that would require more energy than I have.
It’s been a busy few weeks, for me anyway. I think I did something, be in seeing friends or going to medical appointments, at least once a week throughout June. I only had one or two bed days. I also realised that I haven’t had to cancel any plans since January. That’s very good indeed.
I admit though that I am waiting for it all to come crashing down again. I wonder if I will live in fear like this for the rest of my life? Always wondering and waiting for the next crash or setback or, god forbid, full blown relapse. Over the last few days I’ve struggled with the stairs and have felt ‘on the edge’ as I call it, a feeling where everything inside feels like it’s at war and you wonder whether you’ve been running on adrenaline just to keep up with the busy month of June. It’s a sign to be careful and to be extra kind to myself and my poorly body and broken brain.
I think I find summer the hardest. I hear a lot people struggling with the dark, dreary Winter months but for me Summer is when I miss out on most. Picnics. Beach days. Cricket watching. Going clubbing in your flip flops. BBQs that go on until the early hours. Freedom. The fact that things carry on without you when you hoped you might be irreplaceable…
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| Rocking the bum bag, in the days when I could roll up a bouncy castle by myself |
Summer was always my favourite because of work. In recent years my parents have taken over the running of a children’s holiday camp but I’ve been attending or helping and then working there since the age of 4.
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| Fancy Dress Fridays |
In my final year at university I did a bit of the admin side of things too. I can’t even answer my own phone now nevermind the office one. This being my third Summer without the fun of the camp the pain has lessened considerably but I will miss the friendships with the staff, the impromptu nights out, the children, the camp overs… I am so far removed from it all now because of the good old M.E. There are few feelings worse than that of being replaced. I used to be important. I doubt there will be tears over it this year. The first was incredibly hard and, being new to M.E, I’d hoped I could be there. Now I’ve come to accept this life-changing illness for what it is: life-changing.
Alas I am plodding along and have much to smile about. My brother is home after graduating from university and he’s decorated my bedroom for me. A change of scenery for those wretched bed days!
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| Going green, thanks to my lovely brother |
This evening, all going to plan, I am finally off to see my friend’s new house. I have started once again with the painstakingly slow task of driving. My goal for the Summer is to drive the five minute journey to The Meadows, buy an ice cream and drive home again. I dream big! I also invested in some comfortable garden furniture so that even bed days can be spent outside in the fresh air, M.E allowing.
That’s where I am now, outside with my blanket, the sunshine, my coffee and just the birds.
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M.E. myself and I 