Sending some smiles!

I'm feeling a little bit better than I did last time I posted. It's hard for me to deal with yet another fracture as like I explained, it takes an extra toll on my body with increased pain and fatigue. When you deal with problems like these you have to plan things to accommodate them so you can still live a life. Using crutches and heaving around a heavy boot throws everything off. Having to sit down and one by one cancel plans also takes a huge toll mentally, as does realising that after 5 fractures I kind of have to accept this is now a part of my life that I have to deal with. It's not easy. To top itoff, when people aren't supportive it's soul destroying.  I deal with a lot, as does any one with a chronic illness and many times I think people get fed up of hearing about problems. The fact is we get sick of living them too. 

Anyway, things have been pretty bleak but it's made me look at my life again, reevaluate it. To cherish those that have cared, and rethink those that haven't. To look at life and think about what and who makes me happy and how I can make the most of those.

As part of that I realised how much I like to help people and so I have a project on the go. As a transplant patient, it's very hard to go through that huge operation both physically and mentally. You can be in hospital for weeks or months, and even when you get home, you often have to return to the ward to tweak treatments. The transplant wards are also for those further along in their journeys. Any lung function drops, rejection, infections etc are all treated here. Times in a patients life when you are scared, missing home, friends and family. 
It is especially hard over holidays, social media makes it even more easy now to see others going out, having fun, enjoying time with family and friends. When you're missing out it makes you feel it even more keenly. The staff on the wards are brilliant and make things so much nicer but it's still a difficult time. 

My idea is to fundraiser and get donations from companies to provide Easter baskets for the patients on the ward. To let them know people care and to give them a little treat. I've been overwhelmed with the response so far and the kindness shown. As a result the project has grown!
The wonderful people at Harper Collins donated books for everyone on the ward, new titles which patients will love! As a result of that Walker books also donated some children's books to the appeal so I am now creating Easter baskets for the Cystic Fibrosis ward at Great Ormond Street hospital. Again, these kids are often in for long periods of time. Many will go on to have transplants too. We are hoping to create a bond between Harefield and GOSH so it's easier for patients to transision over when the reach 16. The Easter baskets are all part of that. 
Some of the Easter items for GOSH. 

I've also set up a just giving page to buy items I haven't been able to get donated. So far donations total £240 which is amazing! The wards at Harefield have a total of 34 beds, GOSH 14 so a lot to buy for but I'm shopping all the deals and offers to stretch it as much as possible. So far I've bought toiletries, playing cards and some food items. I'll update you properly nearer the time on what went into each goodie bag. 

It's going to hopefully send a lot of smiles to Harefield this Easter. When you're stuck in hospital or just feel alone at a scary time or day to day with chronic illness, it means the world to know people care. 
If i continue to get donations then I will roll any money forward to make some Christmas boxes. 

I'm still waiting to hear from some companies but if you could donate some items, or make a donation to just giving that would be amazing! No worries if you can't, spreading the link and message far and wide would be an amazing support to the appeal! 


It has been really helpful for me to have a focus and purpose at a time when I need one desperately. 
Thank you for any support you can give! 


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.


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.