I do apologise but this is going to be a slightly moany blog, I guess life cant be wonderful all the time! I want to make it clear though before I start that I know how lucky I am and as much as I might complain about a few things now- it is absolutely nothing in comparison to what I used to live with and what other people are still coping with… I really have very little to moan about.
That being said, I have had a couple of tough weeks. At my last clinic I mentioned that the Dr had stopped my ‘happy pills’- the citalopram and amiltriptiline- both of which I have taken for probably about 2 years now. I honestly hadn’t thought that they were doing very much but maybe I was wrong! Coming off them (especially together) I have had horrid side effects of headaches, nausea, sickness at times, dizziness, confusion, feeling boiling hot, weird dreams and just generally feeling really quite odd. Then on Friday I felt absolutely terrible- everything was way worse but specifically the headaches and nausea became unbearable. I have spent the best part of the weekend in bed which didn’t help- the only thing that happened was last night I started a stinking cold! I am now feeling thoroughly miserable and sorry for myself- I think it might be man flu lol. On top of all this of course I have felt what can only be described as fragile! Phil would probably call it grumpy and yes I have been in a really bad mood. Plus I keep crying at stupid things…. like Chris Moyles leaving for examply (although that is actually really sad) but maybe I do need those pills!
I have also been having bad aches and pains in my neck and shoulders which I put down to starting the gym classes and pilates last week. I asked my lovely brother to give me a proper massage which highlighted the fact that I have a big lump at the base of my neck which is what is sore. It turns out I have a “Buffalo Hump” from the high dose steroids. Just brilliant…. no one else has even heard of this but typically I manage to get it. I look like the hunchback of notre dame and Im not happy about it! Hopefully it will go down with time but fingers crossed I wont need to increase the steroids any time soon as I’m not sure my body will cope too well with any more medication.
I am completely puffed up, swollen face, hands, massive tummy which does not go down. I’ve put on so much weight (some fluid but yes some of it is just food) and I don’t sleep much. I hate the way I look and feel really uncomfortable in my body at the moment. I know though- it really is a small price to pay- a year ago I would have been disgusted at the thought of me moaning about tiny inconveniences like this- and would have given my right arm to be walking about and living a normal life- believe me I will never take it for granted ever again so sorry for being so silly now.
The thing is transplant is not a cure. We were always made fully aware of this before going on the list and now I understand why. The whole time we are trying to keep things at appropriate levels and it is a constant battle. I am pumping my body full of strong drugs everyday to fool it into carrying on and thinking it’s healthy- it’s no wonder every now and then it gets confused and rebels! It’s hard work this transplant lark and it’s hard not to always understand everything. It’s a rollercoaster ride- but one I would get back on everytime! I find it hard knowing which doctors to contact and when- you cant go running to Harefield for every tiny thing but on the other hand no one else wants to take responsibility for deciding what is a tiny and what is a significant problem. I also find as amazing as Harefield are, that they do not pay much attention or give enough acknowledgement to side effects, I agree that they are not the main focus but they do make a huge difference to everyday life. Thankfully I get a lot of support from other transplantees online and find their support and advice invaluable on a daily basis.
I’m hoping I am now over the worst of the withdrawal and within a few days my cold will have passed and things can get back to normal. My pet hate at the moment is cancelling arrangements- I have had to do that far too much over the years and it’s not something I like doing now. Apologies to those of you who have been inconvenienced by me this week.
I’ll end on a nice note- the few things I have managed to do this week have been really nice and I did enjoy my first pilates class although not sure if that added to the neck problems. It was also my Mum’s birthday and I enjoyed being able to make her a birthday cake this year and I tried out some of my new cake tools which was fun 🙂
I also forgot to mention before I went to the UK last time I met up with Rachael and Tom for a coffee. They have been travelling in Australia for a year and did a sponsored cycle for the British Lung Foundation while they were there. Rachael for those of you who won’t know / may not remember looked after me 3 days a week when I was ill. She was so kind and was such a help and she really understood what life was like for me on a day to day basis when I was poorly. So to meet her for a drink and show her my amazing new lungs was just wonderful 🙂 Big congratulations to them on their recent engagement too- lovely news xx
So, will shut up now as I expect no-one is reading to the end- you will have got fed up of my pathetic whining! Hopefully I will have sorted myself out before my next post.
Love Kerry xxx