A little moan…

17 Sep

Hi everyone,

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 πŸ™‚

Happy Birthday Mum!

Inside the masterpiece πŸ™‚

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 πŸ™‚ 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

Disney

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7 Responses to “A little moan…”

  1. Esther Chevassut September 17, 2012 at 9:15 pm #

    Hi Kerry, don’t worry about moaning – it’s completely human and natural and we all do it from time to time! You cope so well with everything you’ve been through, it really is an inspiration to us all. πŸ™‚ i’m thinking and praying for you – the side effects sound like they really affect everday life and that must be so challenging, -most of us really don’t know what it’s like but I hope you feel better soon. You are really beautiful and smiley, and so lovely and easy to chat to! don’t forget it, because we all love you as you are πŸ™‚
    P.S. the cake looks amazing!! lots of love from Esther xxx

  2. Mark W September 18, 2012 at 12:59 am #

    Hi Kerry I agree with the sentiments expressed in this post about transplant “It’s hard work this transplant lark ” you are not wrong !! It must have been hard to come of the tabs quickly like that I remember when they stopped my Tramadol suddenly I was ready to swing for someone!! steroids are such a pain, I also understand how putting on Weight is hard I am only now starting to lose mine slowly and you will too.
    One good thing I am always happy about is the superb,supportive and amazing people I have met since my transplant people like yourself.
    It is so nice to be part of this very elite club and help other like us transplanted or waiting for Tx , even if the membership fee can be a bit high at times:)

  3. Carolyn Eley September 18, 2012 at 9:31 am #

    Hi Kerry, You are definitely allowed to moan. You are right that it is wonderful to be alive but side-effects are something we have to live with on a daily basis and it is hard to be grateful all the time. When Dan came off the anti-depressants at the Stoke Mandeville he felt much better, strangely, but he came off slowly. Even this weekend he fell down the rabbit-hole with his third urinary tract infection in 6 weeks. We had a whole weekend of deliriums and fever and shivering. Not nice when you can’t move. Much recovered, now, but it makes you realise how important a feeling of well-being is on a daily basis.

    I will never forget the hush that fell over the church at Kim’s wedding. Firstly, because she looked so beautiful and secondly because you looked so beautiful….and you were there with us. We have to live for these little miracles ….. you are a miracle, Kerry, and we love you for your guts and determination.

    And if that means that you need to moan a little then moan away. We send you enormous hugs, Carolyn and David and family xxxxx

  4. rubyslipper September 18, 2012 at 12:52 pm #

    Hi kerry

    You can have a bit of a moan after all you’ve been through. It was lovely to meet you at last and you didn’t look even a little bit grumpy.

    As for being a bit confused , I bet you have yet to visit the wrong house as I did that Sunday. !! How daft is that!!

    We had a brilliant time in Jersey and enjoyed it even more than we expected. Hopefully we’ll catch up with Phil too

    We hope things look up for you soon.

    Lots of love to you both.

    Andy and Joy

    XX

  5. Alex Baker September 18, 2012 at 2:18 pm #

    Kerry you have such amazing spirit, you are perfectly entitled to have a moan, can’t imagine how you feel, remember on every rollercoaster an up always comes after a down. It will get better, God bless Alex x x

  6. Sue Devereux September 18, 2012 at 8:09 pm #

    Hi Kerry

    The purpose of a blog I believe is to share with your friends how you are and how you feel. So WELL DONE you for being honest and letting it all out. In your case a problem shared is not a problem halved, but I do believe in the power of collective thoughts and good wishes which all who read your blog will be sending you. And so special to have the support of your new transplant friends who can truly understand and help you along.

    By the way, I’m fairly sure I am right in saying that you should not come off the citalopram and amitriptylline quickly; it should be slowly reduced at a time when you are ready to embrace the next step. Please ask your doctor about it asap!!

    Well, the cake looks fantastic. Please can I have a coffee one for April 15th? πŸ™‚ x x x

  7. Alexandra Egre September 19, 2012 at 6:31 pm #

    Awwww, Kerry, you have done so, so, so well it’s just fine to have a little moan. My goodness, you have really been through it all and deserve to moan your head off! Hoping you feel much better soon. Thinking of you and loads and loads of love and cuddles xxxx

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