Hello, I am updating you from Home! 🙂 it’s so lovely to be back and got quite a welcome from Disney, think she was very pleased to see her mummy!
I haven’t known until today which day I was coming home. This week has actually not been great, its been incredibly frustrating for a number of reasons. I will spare you most of the details but I am slightly worried by my lack of patience these days- Illness turns you into less of a nice person I think…. Certainly less tolerant and slightly more verbal anyway!
So I left you last Saturday, not feeling too bad and hoping to go home on Monday. That didn’t happen as I started to not feel too well and I stopped sleeping completely all week, which is usually a bad sign. Anyway trying to get the medical team to acknowledge what I was saying about not feeling well was pretty tricky, they were very keen to get me home when I felt it was too soon and I was still displaying symptoms that they usually tell me to come to hospital if I get!
They seemed to think I was very scared about coming home (which I wasn’t), and I had a number of ‘helpful’ chats about anxiety and being brave! all I actually wanted was to leave hospital feeling better than when I went in, having had one good day before I attempted the upheaval of moving and the energy it would take. I did start to wonder if I wasnt seeing things clearly although mum certainly agreed with me so that helped.
Wednesday and Thursday were terrible days, I really was just not well, and had temperatures on and off. Finally on thursday afternoon, the blood tests showed that my White blood cell count was raised and I was given some antibiotics. Obviously not what I wanted to hear but relieved to explain symptoms which yet again I was right about, I don’t know why I question myself every time that they don’t listen because I have been right every time so far I think!
It’s just becoming more apparent that the doctors really don’t know what to do for me . I know i have a very rare illness and lungs are a difficult area but sometimes i cant help but feel that instead of trying to get to understand my condition, they would rather I was just at home out of sight and so out of mind. I’m sure that probably sounds really unfair when the doctors are very kind and try their best for me. The trouble is I live every day with new aches, pains, symptoms, difficulties and challenges, but without much help. Lungs are tricky things to have problems with because it literally effects every other part of your body and every aspect of your life and yet not many people seem to really understand the extent of that. I know even Harefield hospital don’t have all the answers so I can’t expect Jersey to but as the patient this really isn’t too reassuring!
On Tuesday they decided I could try a sleeping tablet as after quite a few days of no sleep at all, I was absolutely exhausted and starting to be in quite a bad way and my breathing was pretty difficult. I was a bit nervous about taking it as before they have always said it was too dangerous for me to take any sedatives but these were only mild doses. Anyway was desperate for sleep so popped the pill which for 2 nights had no effect whatsoever and still didn’t sleep. Then Thursday night they tried me on a new one which worked instantly and have now had a few great nights sleep. It has taken two full nights though to feel any benefit at all, Friday I spent the whole day in a complete daze, was quite odd but thankfully Saturday I felt much more myself and quite a bit better. Apparently I can stay on these tablets at home and mum seems to think they may help with my back and muscle pains which would be good.
Saturday morning I had a little run in with a junior doctor trying to send me home which I won’t go into other than to say i’m obviously still more feisty than i look… but I had a good afternoon and evening and another night of sleep so decided today was the day to get home. Luckily the ambulance will still do transfers on bank holidays so that was a bonus, thought I might have to wait til Tuesday if I didn’t go on Saturday.
So now I am resting on my sofa in my nice cool living room with Disney sprawled out beside me (she isn’t too impressed with the heat either!) and eating the remains of Kim and Andy’s engagement cake, yum yum! Really looking forward to my own bed tonight.
Thats definitely enough from me for now, so I shall end on a nice note and wish you all a Happy Easter! Xxx