OK, I kinda failed on the promise to keep this blog updated regularly.
I’ve got myself into this habit of leaving the house on my few-and-far-between good days to make the most of them, and having all these words and ideas flying around my head, but by the time I get home and settle myself down with a cup of tea or something to eat, I’m so exhausted and brain-fogged again, I can’t think straight enough to type out a half decent sentence.
Many times I’ve got the laptop out with the best of intentions, but I’ve got as far as clicking ‘add new’ and then sat trying to think of a title for half an hour whilst getting distracted by other things like Facebook & Twitter notifications, or emails I realise I should have responded to several weeks ago
I’ve come to realise that the first stage of exhaustion with ME/CFS is a bit like how I’ve heard ADHD described in adults. My body is physically tired, but my mind is darting from one thing to another, unable to focus on one task and actually complete it.
The second stage is complete FuzzyMuzzies – you can barely remember your own name, let alone think about things you have to do. It’s lying in bed, possibly holding the phone and watching something simple on Netflix (I’ve got my TV shows broken down into categories: those I need to concentrate on, and those I don’t), but pretty much ignoring everything else. The third stage is being pretty much unconscious, barely recognising that the white rectangular thing that’s beeping at you is an iPhone.
Another contributory factor in my failing to keep on top of anything in life was the withdrawal of my Melatonin tablets. This is a synthetic hormone that is supposed to help regulate your sleep cycle. They weren’t fixing the problem completely, but they were certainly of some benefit and for reasons that are still unknown to me & my GP, the prescribing consultant decided to withdraw their approval for prescription (these can only be prescribed under a shared care agreement, a GP cannot prescribe themselves) leaving me without anything to help me sleep. Although ME is known for being a condition that makes you tired a lot, half the problem is actually a completely unregulated sleep cycle. I will go through … of not sleeping, being too exhausted to function, and sleeping for excessively long periods. This also leads to sleeping at odd times of the day, and then trying to break that cycle and get back into a ‘normal’ routine. This is partly why I prefer winter. It is darker for longer, although I do curse Daylight Saving Time – give me dark mornings and light evenings!
Last week, I saw a new consultant who readily reinstated my Melatonin prescription, so I’ve managed to get up at a reasonable time the last 2 mornings, without feeling like death, something to be celebrated in itself. I thought about writing this yesterday, but decided to get my diary up & to do list up to date, and save this for today when I knew I could come and sit in the garden.
So, I’m sat on the ‘terrace’ at the front of Memory Loss Manor. It’s pleasantly cool enough for me to be comfortable (heat is not my friend), and it hasn’t started to rain yet. Several birds have come to visit, although garden kitty – my little ginger friend who pops in to sit and watch my knit sometimes – has yet to make an appearance.
I’ve now achieved something today, I feel much lighter. Fingers crossed this isn’t my only good day so I can still go for Rolkies this week – post on that to follow soon (hopefully) – that’s my go to therapeutic self-care at the moment.
Roll on better sleep and more good days!