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.