There’s no real reason I haven’t blogged, other than lack of time and nothing much to say.
Let me start with the traditional January pleasantries (when exactly is it late enough in the month to stop saying these?!)
I hope you had a lovely Christmas, and a happy new year. I wish you a healthy and fun filled 2014.
Okay before anyone asks my Christmas and New Year were memorable for many of my family whereas they’re completely forgettable (forgotten technically) by me.
The tale starts the 22nd, when we decide due to bad weather I’d drive up that night. All good and fine when I eventually managed to leave at 20:30 for a 2:30 drive. The next day is spent uneventful (for once), until I realise that having come up early I didn’t have enough of my anti- seizures medication to cover the whole period. Trip to the chemist the next day “oh, sorry It’s a special order, we can’t get it in time”, so being sensible we go to the local hospital, who thankfully can supply it after a long wait, but we weren’t urgent, so I’m not complaining, I’m just grateful they were so understanding. They had to go to the other side of the hospital to get some though as it was a specialist drug. So all sorted, ready for Christmas.
Wrong. I wake from a nap, coughing and coughing and getting more and more breathless. This is where the fun began. I phoned 111 who insisted on sending an ambulance. I’m sure emergency docs would have been fine. Except my body decided that having a seizure as well would be extra fun. Had that treated and managed to escape just before midnight. Apparently I was quite entertaining as I was rather full of drugs and insisted to my mum that I could walk, to which she replied, no you can’t now sit down!! That was me told.
Christmas Day I don’t really remember much of, I was suffering the after effects of the night before. Had dinner did all the usual Christmassy things and then had another seizure, apparently I spent quite a lot of the night in resus and was looked after by a cute doctor (dammit why do I have to be unconscious when the hot doctor is around?!) woke up the next morning very confused as to why I was in a hospital bed. Had multiple seizures whilst there so don’t remember much other than them feeding me mostly baked beans as that’s all they had that was dairy free!! I wasn’t allowed home until I was 24 hours seizure free. Managed it and got home, only to have another seizure, so back I went. Had the same paramedic both times, which was handy.
On the whole I was treated fantastically, received good care and the doctors tried their best for me. Nobody knows why I had so many as usually I only have one, could have been a virus, they don’t know. Given they don’t Know for sure what causes them it’s difficult. I’m hoping the neurologists will shed some light on them ASAP. I’m grateful they’re not epileptic as that would be much worse, but they’re still far from ideal.
I managed to get back down to Cambridge the next day. Upon which I was sent to A&E as there were concerns that my retinal tear had got worse. Assessed the next day in emergency eye clinic. Thankfully no worse and should be safe without treatment phew!!
I thought that was it, until New Year’s Eve, I partied hard- we painted a friends house!! But then the coughing started and I became breathless: got home and rang for help. Due to 111 not being perfect they put my lack of proper breathing down as low priority!! Poor paramedic was not impressed although worryingly we remembered each other from a previous visit!!
It was a long night in A&E not that many drunks, but it was very busy. I think it worked in my favour as I was actually put on a ward round so saw a specialist who was quite helpful and I saw a respiratory nurse which was handy. I was admitted for the day and let out late that evening.
It’s been fairly quiet here since thankfully, other than a bit of grumpy asthma still. I’ve got a busy month with specialists, but hopefully things are going to start moving forward.
I’m in the process of sorting out changing to Direct Payments from a care agency. An agency who have been an absolute nightmare and I’m garnering the energy to put in several complaints about them. I’ve got two PAs lined up, but no funding as Social Services messed up the admin so I’m stuck at the moment especially as the agency are terminating my contract. So I’m at risk of having no care for a while, which is not going to be good for me.
Why do we have to fight for such basic things? The ‘care’ agency debacle is definitely worth it’s own post, which will be done soon I hope.
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?!