2.12.2017

Be positive? Try empathy!

I admit this is going to be a ranty post, you have been warned. 

So in my last blog post I told you how I'd been struggling all round a bit. Well to add to that, yesterday I was coming out of my singing teachers house, went to get in the car, slipped and after a three hour trip to A&E discovered I had broken my foot yet again. I was lucky because I could very easily have broken my leg, or put my hands out to save myself and broken a wrist (my hands were full of books which I think stopped me reaching out). This doesn't change the fact that this is my 5th foot break in about two years, and I've worn the boot in total for about 9months of that.  This time in particular the foot is extremely painful.

Now breaking a foot is not ideal but not a huge deal in the scheme of things. Unless you already have a chronic condition that you deal with on a daily basis. Then mentally and physically you may just get pushed over your limits. 

So many well meaning people have told me to 'stay positive' 'be grateful it wasn't more serious/more than one break/etc'. I also feel that if I say how miserable I am or am curt because I'm hanging on by a thread to my sanity, then I'm moaning, or rude. 

When people say to me 'be positive' I want to reply 'try being more empathetic!'. I have had CF all my life and all that entailed, which is too much to even go into here but suffice to say, it's bloody hard work to put it extremely mildly. Then I was housebound and physically unable to do much at all for 4 years of my life. I was also making end of life provisions, being seen by a hospice and constantly reminded that I was on borrowed time, this is horrific to deal with mentally. Then thankfully (and I am always thankful) I got my transplant, I spent 4 weeks in ICU then 3 weeks on the ward weaning off of a ventilator, learning to walk and talk again and generally rehabbing which lasted well over a year. I lost majority of my hair, lost weight, gained weight, and a million other physical changes. Mentally dealing with the whole thing plus the survivors guilt was a massive ask. 

Then to have unfortunately had problems since then with various levels, viruses, and to be left with chronic fatigue and chronic pain, the treatments for which don't do much for the problems and cause their own issues. 
I'm in pain and exhausted everyday. Imagine the last time you felt really terribly exhausted and rather than taking it easy and going to bed, you have to keep going, and going and going. Or when you last had period pain or a headache and instead of taking painkillers and feeling better you just had to work through it. Now imagine that combined, every day. 

I don't want anyone's pity, I hate pity, but a little bit of empathy goes a long way. The whole bone breaking thing is more than a broken foot. It's walking on crutches which causes my body more pain. It's lugging a heavy boot around, and walking awkwardly, using more energy and wiping me out. 
I am so grateful for my transplant and to my donor, but I get down the same as anyone else and life isn't perfect! I haven't been cured. I'm allowed to say that I'm down, or not feeling well because I'm not putting on an act. I do moan too much sometimes and I recognise that, fair point. To those who judge me for it though, take two minutes to consider what I'm going through before you condemn me and maybe question how you would react in my place.

Instead of telling me to stay positive or rolling out the pity party in my honour, send a text to let me know you care. Let me know I can talk to you if I'm feeling alone. Offer to come a see me or what's app some photos to stop me being bored while I'm stuck at home. Come give me a hug and if I'm a bit of a miserable cow maybe make allowances for it (not all the time) but sometimes. Don't feel the need to say something other than 'I'm sorry things are so shit right now'. I'm not asking you to solve my problems I'm just asking for you not to make me feel inadequate because I'm sad, or make things that I'm struggling with into a joke. That only makes you feel better about the situation. 

I've had to sit and write a list of things I need to rearrange or cancel in the coming weeks because a spa day in an air boot isn't going to happen and neither is a weekend in London. But more than any of that its my life being on hold AGAIN. It's wondering how I'll ever get into the profession I love or how I'd ever work when I'm always having a medical crisis. I had a lovely chat with an actor friend on Monday and felt really boosted by his advice, trepidatious, but excited. Now it's all on hold again. 

It's also not knowing when I'm going to start living the life I've fought so hard for without all these interruptions. 

So please, before you utter those immortal words just put yourself in my shoes just for a minute. It's ok not to be positive all the time.

2.09.2017

Life update

Bit of a life update today. 

So as you may have seen in my previous blog I went to Dublin just after Christmas for a few days. By then the kind-of-there-but-not-really cold that had been hanging around for the previous week, came out with full force. When I was away I had to make the most of it despite getting early nights every day and treating myself as much as possible with what meds etc I had. 
When I got home I was able to restart recoup. I went to the hospital to get the iron infusion I needed which I thought would help. It hasn't done much if I'm honest. Anyway, I was also swabbed (nasty process) and it was found I had RSV which is respiratory synovial virus. Basic cold/virus but can potentially be dangerous with a compromised immune system. It had already gone to my chest and I had a mildly alarming cough. My team had doubled up my anti-inflammatory/antibiotic but we were hoping my body would kick it itself. I was told if it got any worse I would need some fairly harsh IV treatment. Thankfully I did start to improve. The annoying thing was it seemed to keep coming back, going off, coming back....
I'm finally feeling better as they hoped I would after 6 weeks, however I'm still very tired and just a bit....blah.. Nothing I would go and get treated for, my chest is fine but my pain has been bad in my back and joints, I've been very tired, my hair is really dry, I've been getting dull headaches, skin is very sensitive, all the symptoms of being a bit run down. 

As a result I've not been able to go very far until recently, and it's usually a bit of a slog when I do. Staying in combined with how I feel, the inevitable connection with feeling pre transplant, the deaths of some people in the transplant community, a reprioritisation of things I can and can't commit to right now and the fact that a few good friends are struggling a lot, has not done wonders for my anxiety and depression. 
I am getting much better at taking a step back and recognising how I'm actually doing. I realised that little annoyances were pushing me over the edge. As though out back somewhere I'm carrying a huge black shadow around with me, I'm not entirely sure what has bothered me so much or what to doable the it but there we go. 

There have been positive things too but it's been a bit of a harder couple of weeks than I wanted. 


2.01.2017

Books books books!

I absolutely love to read. Always have done. After my literature degree though when I had to analyse the crap out of everything I read I tended to go the complete opposite direction and read a lot of easy chick lit stuff. I read a lot of great stuff on the literature degree that otherwise I never would have looked at but by the end it was a slog. Last year I made it a resolution to read more books and varied books, I wrote them down to help me remember those I'd loved, was indifferent too and to simply log what if read. It really helped to ignite my love of reading again. Many of the books below are ones I've completely lost myself in and there aren't many better feelings than getting utterly lost in a book. So I thought I'd share some of my top reads with you X
 

 A huge best seller of last year. Now I'll admit, soppy books and films will make me cry. It's not difficult. However, I do hate a really cliche love story where the relationship is predictable and fake. As most will know, it's a love story between a young girl and a quadriplegic man. I really enjoyed this book and as someone with a chronic illness I didn't have a problem with the issues it raised about assisted sucicide which hit the media after the movies release. I'd definitely say read it but if you're soppy like me be prepared for tears.

 

Had seen this book in the best seller charts for ages. The whsmith at Liverpool street station has their books really nicely laid out so if I'm early or want some reading inspiration I always go in and look, this title showed up again and again. So when I found it in a charity shop, where I buy majority of my books, for 99p I had to have it. I'm so glad I did, I was completely absorbed in it for days. The story focuses on Nella, an 18 year old who recently marries for mutual gains rather than love. She begins her new life with her husband in Amsterdam but quickly realizes that there is far more to her new home and family than she ever imagined. I went on such a journey with these characters and picked up another copy to give out to someone because it's such a brilliant read. 
 

So I can't actually tell you much about plot because A) I don't want to rob you of the joy of reading and finding out yourself, B) you'd have no idea what I was talking about unless you read it yourself. I'd heard so many recommendations for this book that I gave in and read it. For me it was one of those books you are utterly entranced by, completely absorbed in the story and language and cannot bear to put down. Definitely worth a read. Here's a bit of the blurb to get you interested..... "The circus arrives without warning. No announcements precede it......it is simply there, when yesterday it was not" . I defy you not to want to rush out and buy a copy right now. (Finish reading this post though, it took a long time to write). 
 

So Hygge (pronounced HooGar I think! ) is the IT word of the moment. I had the good luck to find this gorgeous book (look at the cover) in a charity shop. So I picked it up to find out more. Hygge is basically the Nordic word for the feeling of contentment or as close as I can get because their is no equivalent word in English. This book explains the concept, the things that evoke the Hygge feeling, and let's us try to recreate it from the place where the people are happiest on earth. Definitely worth a read, really interesting, split into sections if you just want to skim, and makes you consider how little things can make life better.


 

Couldn't write about books I've been loving without including the Bob series. I bought and read the first, then immediately had to order the second and third. Obviously the book has been made into a film now (which I haven't seen yet) but I would recommend the books wholeheartedly. Follow how homeless James found Bob the cat and their remarkable journey along the way. This isn't your typical fluffy, twee animal story. It's real life, gritty, sad and ultimately doesn't shy away from the harsh realities of life on the streets of London. However it's balanced out with friendship, loyalty and a positive ending. 


I was lent this book by my friend who thought id like it. I ended up loving it and she ended up giving me the boom to keep! Francesca Martinez is a comedian and actress who has Cerebral Palsy or as she likes to put it, she's ' a bit wobbly'. As someone with a chronic illness I found a lot of similarities between myself and Francesca and could really understand things from her perspective. She made me laugh and cry regularly and I love how honest she is. Not that you need some kind of disability to enjoy this book, it's awesome. Francesca tells her story from childhood to becoming a successful comedienne, brilliant book don't hesitate to buy it. 
 
The book I'm currently reading is Happy by Derren Brown. I should start by saying I'm a huge fan of Derren, his stage shows and tv work are just utterly mesmerising and I love his honestly and attempts to debunk the myth around certain groups who take advantage of people at their lowest, eg faith healers etc.
I'm really enjoying this book, I'll be honest I'm always better with fiction than theory or self help books but that's just my personal preference. I've found Happy a little hard going sometimes in terms of theorists and the language used HOWEVER the subject and ideas presented by Derren are so interesting and keeps me engaged. As the title suggests it's about happiness, but not in a 'buy this book and it will change your life and everything you ever wanted will appear before you' kind of way. Derren looks at other methods that bring supposed happiness and critiques them, and also goes back to various theorists and philosophers to find out what actually can make us happier. I'm not doing it justice but I would definitely say buy it and see for yourself. 

I hope you enjoy some of these awesome books. What's your favorite book?mdo you have any to recommend that I should read? Leave me a comment x

 
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