Health knowledge made personal
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I hope everyone had a wonderful Christmas and Happy New year for tomorrow night!
I am typing my blog on my new laptop, yes I have a new laptop! So hopefully no more waiting half an hour for things to load, I did just have my brother around sorting it out for me though as my Internet was playing up. I'm now on Google chrome apparently which is better. I was very spoilt this Christmas, I also got a new phone, so now I can go on the Internet on my phone and it's not touch screen so I can actually text again without getting very annoyed at my phone! I got three charms for my Pandora bracelet, DVDs, PJ's, dressing gown, clock and mega drive games you can play on the x-box along with many other gifts! So I have been playing on Sonic, Sonic 2, Sonic and Knuckles and Golden Axe all week, I'm not as good as I remember! I have so many memories of playing on these games with my brothers, writing down what to do on each level, such geeks! I felt really guilty actually as I only had four presents for Pete, there was supposed to be five but one got lost in the post! I wasn't well enough to go shopping once I got out of hospital so my pile for Pete was rather small. Pete finished my Christmas shopping off for me and wrapped everything, but I can't obviously get him to do his own! We managed to get the Christmas tree up on the Thursday before Christmas, but only the 6ft one and not many other trimmings, but at least there was something on the day to make us feel the part! I didn't have the best Christmas, just because I felt so terrible. The food, people and presents were great, just my body that wasn't. However I tried my best but to be honest I was dreading Christmas Eve-Boxing Day as we had so much planned and I had no idea how I was going to do it. When you get so breathless so easy everything is such hard work, even going to the toilet, every action takes so much effort. Last Thursday I practically stayed in bed all day and even turning over in bed was making me breathless and cough terribly. It's so hard to describe and until now I don't think I've ever experienced it and could not imagine what it could be like. I couldn't cook anything as I couldn't face walking in to the kitchen, I most defiantly could not shower or bathe on my own, I had a shower one day and ended up sat on the the bath floor because I tried to wash my hair. I was obsessing over things I was going to have to do which would make me worse, like at Pete's parents I knew I'd have to walk up the stairs to go to the toilet and I had to think of clothes I could wear without a bra as bra's just make me feel constricted. Anyway I managed to get through the festivities and did start to feel slightly better on Boxing day, however the day after I felt terrible again. It's disappointing because anyone who knows me knows I love Christmas and I still had a good time, I'm just angry at my body for making a fun time of year even more hard work and worrying for me. I went to the ward on Wednesday and the good news is that my sats were 96% so that's an improvement, my fev1 was 33% and my weight was 52.9kg so I'm 5kg down. They are now becoming anxious about my weight so I have lots of supplements to try and I'm trying to have 900 calories a day in supplements. I'm having a ensure plus which is 300 calories to sip on in the afternoon and a skandishake in the evening which mixed with full fat milk is 600 calories. There are all sorts of supplements, some come made up and are like a milkshake like the ensure plus, some are like a fruit juice (they are horrible but okish if mixed with lemonade). Then skandishakes and build ups are a powder you mix with milk so more difficult to make but taste slightly better. I have also been put on Prednisolone 30mg (steroids) and damn Voriconazole again! My CF team do not like to use steroids unless really needed, they have alot of nasty side effects such as thinning bones, upsetting blood sugars and other things I don't really know about. Two things I do know they cause which I dislike is a moon face (although only usually if on them for awhile) and insomnia. I only had 4 hours sleep last night! The good thing about steroids is I already feel loads better, its amazing! They make you have lots of energy and my appetite is already better too! The Voriconazole I know all about, no doubt I shall feel like a vampire soon because they make you sensitive to light and my hair will start to thin again. Hopefully I won't hallucinate this time! So I am feeling so much better already its unreal, I can do things again! I am at the hospital again next week but fingers crossed my lung function and weight will be up and this will be the end of the silly cold that ruined Christmas! |
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