Hi everyone, I’m back!
Well, I am feeling quite a lot better although am still very tired. I am mostly sleeping ok which makes a big difference to how I am the next day.
It’s a strange thing, some days from the moment I wake up I am struggling to breathe and I am constantly just waiting for the next 4 hours to pass until more nebs or morphine dose etc. Then the next day I can wake up absolutely fine and almost forget to have my nebuliser for an hour or two and wont take any morphine all day. It is so changeable and I can never seem to really work out a reason for any of it. Anyway I am not complaining- if I felt awful all the time it would be horrid so am always grateful for a few good hours! ☺
I am sorry I am so out of touch with everyone. The last few weeks have just disappeared, I have slept loads. I have hardly been able to keep my eyes open most days, plus going back to physio has made me tired although they haven’t been full sessions- just walking assessments etc. I am slowly getting back onto my computer and into e-mails so I will get round to replying to all your messages in time. I love hearing from you all so please keep messaging me- no reply doesn’t mean I haven’t read and appreciated them.
Thank you for your wheelchair name suggestions too. I haven’t fully decided yet although there is a current favourite in my mind. Keep them coming and I’ll let you know when I do formally name him! People have asked why a boy? I don’t have an answer to that- it just seems a more boyish piece of equipment than Mabel… its very heavy too (not that I have lifted it but poor mum has to!).
The exciting parts of the last few weeks have been visits from Kim and Andy (my sister and her fiancé) and my Dad. Phil is here for a whole week at the moment and Mum will be back on Monday. Feels like ages since I saw her! She left for holiday on her birthday, we had a little celebration the day before and here is a picture of her and her cake (which she had to make herself!)
I also finally made the most of skype and had a great long overdue catch up with my good friend Ying-Ying in Hong Kong ☺
Disney has now gone home and I am getting used to it. I miss her of course but I know she is being well looked after. She has been so well behaved and just continues to adapt to changing situations- she is such a sweetie. Just before she left I found her all cuddled up in my brand new dressing gown. Rather naughty of her but so cute so I had to take a photo!
Oh and thank you to Aunty Sue for buying Disney a new, very special collar. Think it is right up Disney’s street, with real swarovski crystals in it. Phil will take it home and put her in it and photos will have to follow. It’s pretty special ☺
Aunty Jane has been testing my brain and trying to teach me to play bridge. It is a great time to learn to play (especially whilst I am living with an expert!). I am finding it quite a lot to take in and still don’t know half of it but good to get my brain working on something. I also want to learn to play proper Mahjong (I am addicted to the computer version on my ipad!) and I am trying to improve my non-existent chess skills. Dad tricked me into thinking he wasn’t very good and then beat me within 5 minutes (wasn’t too impressed with that!!).
When I was at the Brompton, I met a lady in the next bed who runs a charity based in the Victoria ward there which buys things for the patients to make their stay more comfortable, like hairdryers and remote controls for tvs etc. It is a really good idea and she obviously works really hard at it, with a few other people. They make things to sell to raise the money and when she is well enough she does a market stall. Anyway I took some little cross stitches to make for her and I also said I would make some jewellery- bracelets and necklaces with beads that I like to do and I would send them to her to sell. So this week, I put aside a day to start that. I made a couple of nice things but will need to make a few more before I send them to her. Its nice to do something useful for a change although like everything else, it really tires me out. Its quite frustrating not being able to do as much as I think I can- my body just doesn’t keep up with my brain!
I was so lucky to get that Brompton admission when I did, I learnt to use the biPap not a moment too soon. I would have been in real trouble the following week without it as for the first time my carbon dioxide levels rose very high and needed properly rectifying. The only way to really do this is BiPap by yourself or a full ventilator, which they did talk about at one point. I have probably said before that full ventilation will mean no transplant for me and it’s very unlikely with my lungs in the state that they are that I will either come off or last very long on the ventilator. Depressing subject I know, although shows you how lucky I was with the Bipap timing- to have my own machine, set up and ready to go.
At the moment I am sleeping on the Bipap every night, I am meant to do 6 hours if I can. Most nights I wake up between 4 and 6 am and switch back onto my normal oxygen. The bipap mask is not nice to wear and has to be very tight against your face (you can see the photos below). When you are first told you have to fall asleep with it on- you just want to laugh and say how?? I have to say though, it doesn’t actually keep me awake thank goodness. Anyway, last night I woke up about 2am and had enough so switched to oxygen, except I didn’t move the tubing. So it was only when I got up at 11am this morning that I realised I had been without oxygen all that time- no wonder I didn’t feel great! Not very clever but I guess as a one-off it won’t hurt! Here are some pictures of me modelling this very attractive accessory…!
I think I have said quite enough now so I will just leave you with a few more pictures… xxx