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.

Right?!

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.

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