A burning desire to sleep


There is a certain cruelness to this disease in that when your body aches and you are in pain and tired, you can’t sleep. I know, I know, I demand so much of my poor broken body, I mean sleep when I need to, really pushing it there. There is also something poetic about the fact that I am actually drafting this post, in bed, at 1 am on my phone because guess what? I am in too much pain to sleep.

To continue the lack of sleep theme, the more tired I get the more my body mis-behaves and I get things like tremors, only on my right side but as this is my dominant side it can cause issues. See there was a little bit of an incident last Friday, I had only had about 45 minutes of sleep and I was trying to make a coffee. An action that was clearly beyond my sleep addled brain. What I actually ended up doing was to poor boiling water all over the back of my left hand. Years of living with a paramedic meant a certain amount of common sense kicked in, remove wedding ring and watch in case of swelling and straight under the cold tap. It wasn’t really looking to good so of I went to minor injuries where they put a specialist burn dressing on it and bandaged it all up. Then so a couple of weeks of trips to the nurse every few days to change dressing and keep an eye on the blisters, which burst. It was all looking rather unpleasant but is slowly healing.

Other than those escapades it has been an interesting week, I had an appointment with the neurologist on Monday, in regards to the tremors, I had to take along video footage of the tremors. The great news is that it is 99.9% certainty, not early onset Parkinson’s. However, the neurologist is not quite sure what is causing them so before he puts it down to ‘part of the autonomic dysfunction’ he wants to rule out the possibility of TIA’s or mini stokes. So it’s off for a contrast brain MRI. Fortunately there wasn’t much chance to wait around and worry about it as the hospital called me on Tuesday and I went for the scan on Wednesday. With the burn on one hand and my notoriously bad veins it made cannulation interesting but thankfully not impossible, after a couple of attempts they got a line in. The scan itself was fine, the MRI is a little claustrophobic as you have to have a cage over your head and a plate on your chest. However it is just one of those things you have to get on with – lie back, close your eyes and think of England – Ohhhhh Matron! I haven’t had the results of the scan yet but should receive them in the New Year.

I also had a Cardiology appointment on Thursday, busy week for me as it was my first week back driving again after the spinal surgery. The cardiology appointment went well, although I have now been diagnosed with postural orthostatic tachycardia (POTs). This is why I get those episodes of ‘spontaneous sitting’ my cardiologist quite liked this description of fainting. This means some life style changes, I need to drink more isotonic drinks rather than water – which as I pointed out was not great for the post-Christmas podge that I am developing. Also I need to try and wear compression stocking, which I really really hate, I cant stand having my legs trapped and they make me feel permanently trapped. When I came home and told my husband I had to wear stockings more often I don’t think he had the surgical type in mind ;-) not really a sexy look! There will also be a period of trial and error with new heart medications.

We are now in that time between Christmas and New year, I always love this time of year. My family and I are actually away and it is so nice to have a break from the hospital appointment and treatments. Even if the first thing my husband I do is locate the nearest hospital, just in case. It is a nice time of year to relax and reflect on the year and contemplate the new year ahead.

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