I had a really good week last week, I went away for a few days and got to catch up with lots of people and even had an excellent evening at Laughterhouse in Basingstoke. It was great to be out and about and socialising and doing lots of things again.
But then comes the payback. Now, I don’t think I could ever be accused of having a ‘Pollyanna’ attitude, but I do try my best to keep a smile on my face and to be as quietly optimistic as possible. That’s been really hard the last couple of days though, so I apologise if this post is a little more depressing than I would like.
Since I came back home on Friday two things have happened:
First, the fear set in. My heart would not behave itself at all and I admit I started to get quite scared. Now, this isn’t really like me, but I think this new found fear stems from being on my own again. It’s the knowing that if I dropped dead tomorrow, I probably wouldn’t be found until my cat had already used me as dinner.
Not the most pleasant of thoughts I know, but I did say I was going to be honest! Anyway, I took some herbs for my heart and some flower essences for my mind, and both settled down somewhat. But then came problem number two…
I hate being a sick person. I’m 26 years old and I don’t want to have to weigh up everything I do and the toll it will have on me. I want to be able to go out dancing and enjoy myself without knowing it is going to cost me dearly. I want to be able to have a life, without that life nearly killing me.
I resent the fact that having a good few days has left me feeling awful and today I hate this body and this illness and all the things it restricts me from doing. And that’s dangerous because it can mean that I don’t pay attention anymore and push myself too hard because I don’t want to be that sick person who can’t do things.
I remember being 16, with a supposedly terminal illness, and just packing my bags and getting on a plane to Australia. Everyone thought I was mad. Was I scared? Probably a bit. But mostly I just wanted to enjoy the time I had left. And I did. I traveled and partied and had an amazing time. And I didn’t die. In fact I came back healthier than ever.
So, what’s changed in those 10 years? Well, a lot of water has gone under the bridge for a start. But more importantly, my illness has changed too. I can cope with tiredness, I can cope with pain, but when your heart is playing silly buggers and you can’t breathe it’s a very hard thing to ignore.
For what seems like the first time in my life, I am finding myself restricted by this body of mine. And I don’t like it very much. But I have faith that it won’t always be this way and that is what keeps me going. However, I also have to learn to accept my limitations, even if I don’t like them very much.
Fear and loathing have definitely been the order of the weekend, but hope and cheeriness shall be restored by Monday morning…
Only Human Too... 
Oh hugs hun.
Sorry that you’ve had a really bad week, Im sure that it will pick up, Keep being your positive self, as your attitude to life is quite right. You only have one chance to enjoy it, so enjoy it
love and hugs
Tracey
The fear? That’s your spur to make good decisions about getting well. (And by the way, if you go off the radaar for longer than a few hours, we notice).
The loathing? How about admiring the body that has defied what you have been told, the body that still does allow you to hang out with friends and to laugh and be loved?
We all have times when everything looks black and it’s all unfair and too much to bear. Let it out, feel it, let it go. And having the courage to say it out loud makes you a very special person.
Callie
Another incredibly brave post sweetie it helps put life in perspective. Keep smiling the power of the human spirit cannot be dispelled I know you are strong and with good friends around you, keep the faith and keep fighting.
Thinking of you
Clive
Good for you, get it out there, then draw a line under it and move on. You know that we are what we choose to be. But lovely – do you see a homeopath/naturopath? You need someone to walk alongside you, you can’t always do this alone. If I lived down the road I’d be over with a bottle of wine and a big hug!
Callie
Your post is heart rending in its honesty but inspiring in all that you have and continue to achieve. As you say tomorrow is a new week with new hope so may your faith be rewarded.
Nedstix x
Hey chicken,
Just been reading through some of the other comments, and would really just like to echo what Lisa’s said as it hits the nail right on the head (but from what I understand, she’s particularly good at that :-))
Sadly, we can’t help you fix your body, but we can help you when you’re low. I only ‘met’ you relatively recently through Twitter, but already I have an instinctive concern if I don’t see you on there for a while. In fact, from what I’ve seen, you have an entire community looking out for you Callie, please don’t feel that you are alone.
Sending you a massive virtual hug.
V x
I don’t know if I’m just weird but after reading this I’m like wow you went traveling when you were 16. That’s what stands out most. Do you know why Callie? Because you as a person are not defined by some illness that has a habit of rearing it’s ugly head. You are defined by how you embrace life. It’s that which makes me aspire to be more like you.