Archive | April, 2011

Sunday 24th April – Easter day!

25 Apr

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

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Saturday 16th April

16 Apr

Well it’s 5am and I can’t seem to go back to sleep so I might as well use the time wisely and update the blog which I have been meaning to do for days now!

I am back on Bartlett ward, moved here on Tuesday evening in the end. Nice to get out of ICU, although it’s all very reassuring being there and the nurses are so lovely, it’s not a very peaceful place, having said that it was very quiet this time so not so bad. They looked after me very well and sorted my breathing out, and monitored my heart etc for a few days and now I’m just building up my strength a bit to go home and reducing medication.

I have my own room and everything I need in here and the nurses all know me pretty well by now so nice to have friendly faces around. I also have my anniversary flowers and cards all up in here which look lovely. Bad timing to have been in ICU where you aren’t allowed them but luckily I moved here before the flowers died!

I was initially hoping to get home today but I decided I wasn’t happy with that, I only went down to my usual amount of oxygen yesterday and still only just managing the necessities like washing. I am so tired but am sleeping quite well, apart from about 4.30 til 6 am at the moment. I will fall back to sleep after doing this blog and won’t be able to wake up for my coco pops!

The afternoons have been quite testing so far, I either get very breathless or I feel pretty grotty, or most days both! It’s obviously just an afternoon lull from tiredness I guess so not much I can do about that but was hoping to get out of the habit before going home.

So the latest plan is home on Monday and I am looking forward to it, I miss Phil and Disney a lot in hospital and I also miss my bed! The ICU beds are really comfy but I’m not so keen on the ward ones, how they can think they are big enough when I can’t stretch my legs straight in them I have no idea! What do tall people do?! I have my trusty v shape pillow with me though- that comes everywhere with me these days and makes most places more comfortable.

Sorry for the lack of update until now, I have just had no energy at all, I have hardly used my iPad or anything this week, not sure how the time has gone so fast when I have done absolutely nothing! That’s another reason why I’m not going home today, everything is more tiring at home, more to do for myself and further to go for things so will find it more difficult than being in here.

The good news is I haven’t lost any weight during this illness, I managed to keep eating, plus I have discovered hugely calorific White chocolate mochas from the bean and have been kept in constant supply (thanks Dad) 🙂 think they have definitely helped on that front.

So the only other thing really to mention is my horrid mood! I am not a happy bunny and am really struggling with keeping positive at the moment. I am absolutely totally fed up of being Ill and that call can just not come quick enough as far as I am concerned. I find it quite worrying though that I have almost done a year on the list and not one even false alarm…. Makes me worry it’s just not going to happen…
Anyway, will leave these dark contents of my brain for another post and another day, think I had better try get some more sleep!

Hopefully will update from home soon! Xxx

Sunday 10th April

10 Apr

So hello from intensive care again!!! Great timing as per usual- it’s not exactly where phil and I were hoping to spend our first wedding anniversary yesterday! Never mind! We managed to make it special in our own way, can’t believe it’s been a year since our lovely wedding day. I’m very lucky to have such a lovely and supportive husband.

Anyway back to medical business, I’m sure you’re all wondering what I’ve been up to over the last week. It’s not a particularly exciting story, just kept getting worse breathing wise and temperatures etc. On Thursday, The doctors decided to admit me for a bit of a reassessment but by the time I got to hospital they felt I was safer in ICU. Good call it turned out especially when my heart decided to misbehave the day before yesterday although I think we have sorted that out now.

Last night I finally got a good night sleep and now definitely made progress today. We are now hoping that a room will be free on the ward tomorrow and I will still be well enough to move.

Thank you for all your thoughts, cards and texts and I will hopefully update from the ward soon.

And thank you to Kim for typing this up for me! Xxxx

Wednesday 6th April

6 Apr

Sorry for lack of posts, it’s unfortunately not been a good few weeks. I’m doing ok but will update you when I’m feeling more energetic.

In the meantime I will leave you with 2 pictures that tickled me and I feel some sort of connection to this week!

Will update properly soon xx

Photo catch up!

6 Apr

Hello, as you may have seen I have been working on the blog and added some photos etc to make it more interesting! There are a few photos that should have been attached to blogs whilst in hospital so I’ll put them up now:

Special present from Dad! xx

Kim's 'special' Doughnuts!

My personal Tuck Shop in Hospital

My present and card shelf in hospital