New year, new start? Not in my world. I had the misfortune to end up in A&E at 1am New Years Day. I hasten to add, that it was not drink, or drug related, well it was kind of drug related, in that I couldn’t access the medication that stops my right hand side kicking and shaking. I usually administer it straight into my central line, but my TPN was up, so that option was out of the window. We phoned (I was at a friend’s house party) the emergency doctors, who eventually came out, about 2 hours after we phoned them, and I’d explained to them multiple times what was wrong and what I needed, only for the GP to fail to cannulate me (apparently hadn’t done it for 7 years!!) so he phoned the paramedics, who managed to get a line in, so the GP could administer the medication. Unfortunately by this time my spasms were completely out of control, and my rescue medication wasn’t enough to stop them. After some coercing by the paramedics the GP gave diazepam, which didn’t work and I was bundled into the ambulance. It says a lot about your lifestyle when the first people you greet happy new year to are paramedics and a Doctor!!

Fortunately A&E was quiet when I arrived, apparently I timed it well. Was seen relatively quickly, the doctor came back a bit later and asked me had the medication helped, he wasn’t too impressed with my response of “what medication?”. Think someone may have been in the dog house with him for that. Was given yet more diazepam, which slowly calmed the muscles, but I was still completely with it, which I think he was rather surprised about, but clearly doesn’t know that many EDS patients don’t sedate very well!!

Eventually made it home about 4:30 am, got to bed around 5 and was meant to be up again at 7. Kind of failed to do that, which meant the care agency again went against my wishes and phoned my parents to ask what to do. I’m 27 and my parents are not my keepers, and so don’t know where I am at all times. They are meant to do use an emergency key, but apparently that was beyond the call room staff, I must have the same conversation with them every couple of months.
Carer located me finally, I did some essential stuff and then crawled back to bed. Was a very quiet day unsurprisingly.

I was back to training on Wednesday which was good, but still no time on the water, as the club is flooded still, which is a real shame, but what can we do?

I’m really giving my body clock a battering this week, after not getting to bed until after 5 on Tuesday, today I was meant to be up at 3:30 to see one of my consultants in London. Hospital transport say you have to be ready four hours in advance, so that was 5:30, and it takes two hours to get all my medical stuff done as well as standard prep stuff. In reality I woke up at 4:47 and panicked!! Thankfully although they say be ready four hours in advance, I’ve never known them come more than three hours early, so luckily I had a bit of time to spare. Consultant was wonderful as ever. He is the one who refers me to people and generally just makes sure things are ticking over aka tells others that they’re being unreasonable/ridiculous etc…

Tomorrow I start back with my PT, I think it’s going to hurt, but then as they say

No pain, No gain

Then I’m heading to the local hospital to see my orthotics specialist, I’ve lost/ had stolen one of my ankle braces, wanted to ask him about stronger ones anyway. Quick turn around and off into the city to see a friend, pick up a few bits, and have an eye test. Going somewhere new to see if I feel happier with them. Oh and then in the evening, I’m going out to a friend’s birthday, which should be nice, although given the week I’ve had an early night might be more tempting!!

It’s been a crazy week, not just on the training and medical front, but on the personal side, I’m not one for airing my laundry in public, but there’s been a lot of emotions running round.

I’m hoping for a more straightforward week next week, unlikely to happen given it’s me, but a girl can dream can’t she?!

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