Edgar’s 21st birthday- can’t believe my baby brother is 21, and I’m missing all the parties 😦 hope he is having a great time- I’m sure he is!
I’m going to apologise on 2 counts for this blog, firstly it has taken so long to get the energy to update you properly that now everything is a bit jumbled in my mind and I can’t quite remember what I am supposed to be telling you and in what order!
Secondly, the last week or so has been hard, I try not to feel sorry for myself but life really isn’t easy at the moment and its not much fun. I have had enough of missing out on things, sitting on my own panting away in pain and hearing everyone having fun in the next room. Don’t get me wrong, things could be a lot worse and I’m so lucky with all the support I get, but I am beginning to reach my limit now. I never get a break from this constant struggle just to breathe and this week has been a real reminder that I really am not well and time is ticking. I am really worried that Harefield just won’t call me in time, I keep thinking it must be soon but it might not be… Im sorry- you will probably find this blog does not have the usual optimism to it, but I guess it can’t always!
So to fill you in on things since 10th July, first of all I had my check up at the local hospital to check things had recovered since my last admittance (which I saw from my notes was actually diagnosed as pneumonia and type II respiratory failure (which basically means my lungs weren’t working enough to get rid of all the carbon dioxide). Think I was lucky this infection wasn’t worse. I had another x ray and they were pleased with the recovery and gave me an appointment for 4 months.
Unfortunately the very next day, I wasn’t well. I had quite a nasty pain develop and over the next few days was getting more and more short of breath. In the end after a really bad night, I went into hospital on tues 19th to get checked out. I will give you the short version of events because it’s all rather boring to be honest. They couldn’t find any infection or in fact reason for the pain and breathlessness, despite very thorough tests so basically it’s just a case of managing these symptoms of my lung disease and hope they lessen with time. The main change is they prescribed me liquid morphine, oromorph to help with pain and should lessen the breathlessness too. I was quite weary of taking this one but the few times I have tried it, it’s really worked. I take an anti- sickness pill with it and so far no problems. I am trying to keep it though for when things are extra bad, I don’t like having nothing left to try!
They let me go home on Friday 22nd, just in time to see mum and dad before they went off to my cousin Jonathan’s wedding. Congratulations to him and Emma, looks like they had a fantastic day.
I was cross last week to miss a little get together I had organised with some friends for Suzie’s birthday. It was my only chance to see ying-ying who is over from hong kong too so was a bit gutted about that.
On a nicer note, I really enjoyed a ‘Wheatley’ family get together the other weekend before I was ill, it was lovely to see everyone.
So after I got home on the Friday, I spent a very quiet weekend being looked after by Jane and Jim. I was very antisocial and slept for most of it. I have been so tired, I can still barely keep my eyes open now. Slightly worried that it is due to high carbon dioxide levels again as I have a few other symptoms like shaking. Need to go back to hospital to get my blood gases checked tomorrow. I also have caught a cold so not very happy about that. Really hoping it stays at head level though (fingers crossed!).
Right now I am in a good state to be operated on and it’s so frustrating watching time pass without being called and then I get Ill again. It’s so important that the call comes at the right time and I don’t know how many chances at that you get! All I can do is keep my weight and physio up but the rest I am not in control of at all.
I am extremely proud of my weight, 40kg is a huge milestone for me. I feel positively chubby 🙂 let’s hope I can keep it going. The first thing the sister on the ward said to me was “you have put on weight I can see!” usually that comment wouldn’t be met with such a big smile!
I have also been doing well at physio and climbed the stairs today for my bath all by myself 🙂 it did take a while but that’s ok!
So phil came over on Monday and we celebrated his birthday a few days late by eating chocolate brownies (his birthday cake!) and napping- all very wild! I am disappointed that I’m not feeling good and able to make the most of this week. Phil is here until Sunday and it is our only week together in goodness knows how long. I really wanted to be on good form for it. Never mind, it is still lovely to have him here.
Well I think that is enough moaning from me, sorry not to be more interesting but I guess there is no point in this blog if it’s not realistic!
Will end by saying happy 5th birthday to phil’s nephew Owen tomorrow! I hate missing birthdays but I’m sure he will have a great day and be spoilt rotten!