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Battles of the body and brain

First off I would like to say happy new year to everyone reading! I had a lovely time seeing in the new year at my local pub with friends despite being on IV's I was able to stay out until gone midnight by doing my night time dose slightly late! So far though, the new year hasn't been all too exciting and if anything I feel like I'm come to a standstill.

It's been a year now since I had to give up work due to my health and to say I miss it is an understatement. It is also a whole year that I have been on permanent IV antibiotics. These 2 things combined are starting to take their toll on my mental strength as you can imagine. My energy levels and lung function are getting lower and lower meaning I'm finding it harder and harder to go out and about to do things so I'm spending a lot of time in bed feeling rather fed up. I feel like my life is on pause whilst everyone else's is moving forward. I think this feeling has intensified over the last couple of weeks now that everyone has gone back to work after the christmas holidays and is in their own daily routines again whilst I'm just stuck in the same routine I have been for a year that consists mainly of sleep and medical treatments.

More than anything I am frustrated at myself and lack of motivation, I keep telling myself that life before transplant is still life and needs to be made the most of and lived, I can't just sleep it away and waste it with the excuse that I'm going to live life to the full after my transplant. Everyday before I go to sleep I think tomorrow is going to be the day I get up and do something productive, my main goal is to make some cards and get an etsy shop up and running, but tomorrow arrives without motivation and I seem to sleep another day away achieving nothing. It's a very bad rut that I've got myself into and one that I'm really trying to get out of.

I do do other things except sleep I promise, I go out for dinner or lunch with my friends, I go and get my hair done at the hairdressers most weeks, oh and I visit the hospital at least once a week for blood tests or a change in antibiotics. But I have to prepare for these outings by making sure I sleep up until the last possible moment before going out and not planning more than one thing a day as otherwise I just can't manage it physically.

I'm a spontaneous person and my ability to be spontaneous has been taken away with my declining health. I'm also a lover of the outdoors, going for country walks or bike rides used to be one of my favourite things but now I can't walk any long distance and the cold air aggravates my lungs causing coughing fits. This time of year is an awful time for coughs, colds and virus' so going out to public places pose a big risk, if I caught anything I dread to think how ill I would become. I need to try and reverse my thinking so that instead of being upset about all the things I can't do, I need to be grateful and enjoy the things I can still do.

I know this post is rather negative and whilst I am feeling a bit fed up, I can assure you I am remaining positive that I will get a transplant this year and am working as hard as I can to stay as strong as possible for when the call does come so I have the best possible outcome from the transplant. I am also very lucky to have such supportive friends who push me in my wheelchair or carry my oxygen for me or on my bad days come and spend the day in bed with me eating chocolate and watching films. Then of course I have the most incredible parents who do absolutely anything and everything I need them to to help me and are so caring and supportive. So really I am very lucky and I'm sure with such great people around me I will be back to being my cheerful self and gain some motivation.

If anyone would like to commission me to do them a card for any occasion, it may well give me the kick up the bum to get creative! Send me a message on twitter/facebook and we can sort something out!

Thanks for reading my ramblings and sorry there is no photos in this post!

Holly x


  1. Holly, I was not sure how to send you a private message here on the blog, so I sent you one on Facebook. Chin up! Keep moving forward!


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