missing pieces?

I’ve not felt myself for a week or so and I haven’t been able to put my finger on it. I’ve kept myself to myself and just sat and pondered and thought about a fair few things.

Things are sinking in.

Realisation has hit me and I’ve only just actually come to terms with everything.. I feel more stable, I have no choice but to accept what’s going on and what is happening but I’m not happy about it and I shall keep fighting it because I’m not just going to give up.

This may sound silly.. a little confusing? Let me explain.

In the duration of me pondering and thinking I have been reflecting and thinking back on the past couple of years and I cant help but be flooded with an overwhelming drowning feeling.

Cystic Fibrosis over the past year and half has really kicked up a whole new level, a level I never expected to be at so soon.

I’ve always known it was an unpredictable disease and that there was no certainty or stability with it. I guess I’ve just been thrown and had to adapt to things so quickly that I haven’t fully absorbed things and I was so consumed in making sure everybody else was comfortable and okay and understanding what was going on, that I neglected to allow myself to adjust.

You see I am the person who pushes things away if they feel like too much, I usher them to the back of my head so that they aren’t seen or heard of and I carry on and then something else comes along and I push it to the back of my head and carry on; then another comes and I do the same, then another and vice versa.

The thing is… it’s just not good for me.

It makes me have more off days than good days where I have to pretend and smile away.

Please don’t get me wrong, I am happy, I am unbelievably happy, I LOVE my life and wouldn’t swap anything in it if it meant that everything changed.

However, i get to a point though where I struggle and think too much and things suddenly crash down because I piled everything too high at the back of my head. Therefore, I decided I needed to have a clear out and I got the time to do that this weekend whilst I was visiting family in Essex. It was quiet and sunny and the perfect place to just think and sort myself out.

I’ve been reading back through my old blogs from 2009, early 2010 and I cant help but feel sad.

I read how I did 30-45 minutes straight on the treadmill with both incline and of high speed without oxygen whilst listening to my ‘play list of the day’
It makes me feel sad knowing that I can just about manage 10 minutes straight on the bike with 8litres of oxygen blowing through my facemask.

I read that I wanted to get good grades in my May from my exam at Oldham sixth form.
It makes me feel abit useless that I couldn’t manage that anymore and makes me feel bitter at the fact that I put all my effort into GCSE’s and arguments with my dad about further education just to have all been a waste.

I read that I’ve been on a walk to town from my house and then back to my friends’ house in Waterhead.
It makes me feel gutted that I wouldn’t dream of walking to my friends house from my house anymore which used to take me 10-15 mins.
It makes me feel angry and sad knowing that I rarely see or speak to that friend anymore as her life is moving on and she’s going to uni this year where as I’m stuck... trapped almost and unable to move onto the next stage like all my friends are.

I’m very bitter about that if I am to be honest with you all.

I feel like I worked harder and put everything I had into schoolwork because I genuinely loved it and I was good at it. I was the nerd who just kept her head down and got on with her work. The girl who was shy and quiet in front of people who weren’t in her group of friends and who stayed away from trouble including simply giggling and talking in class. More than likely, the only person in my year who did her homework the day she was handed it before the school day had finished at 3pm.
All that hard work and dedication just seems to have been not worth it really.

I find myself being such an angry and easily annoyed little soul sometimes.

At things such as; people smoking, kids of 15-16 acting 21-25, people using drugs such as weed, people who think the end of the world is when they’ve had a hard day at college because the tutor kept them behind half an hour!
I make myself laugh because when I am in the mood I am in right now whilst writing this... I think, “LIGHTEN UP! Your 17 not 87!”
However, when I am having a bad day I cant control my temper with them. It gets the better of me and I usually have to try my very best to ignore them.
I feel like I have an old head on young shoulders with regards to my views and opinions on things.

I’m 17, and when I was 16 I was healthy, I was able to go for walks round the ressies, I could go for a walk to town with my boyfriend and walk back to his house, I could go shopping with friends or family and walk around the Trafford centre, I could have my room on the top floor which included two flights of stairs, I could do 30-45 minutes on the treadmill without the need of oxygen, I didn’t use a wheelchair to get around large places, I didn’t need oxygen at home, I didn’t even contemplate or think about the whole transplant scenario, I didn’t think I’d be unable to go to college or having to go in for IV’s every 4-5 week, I didn’t think I’d need to sleep on a ventilator and I didn’t think I’d need to have a PEG fitted to be fed a 500ml bag of 2000 calories worth of feed every night.

Within the space of a year... it’s all changed and I had to change too!
I had to put things on hold and I changed my views and outlook on life too.
I’m not as optimistic as I used to be... I’d say I was just a lot more realistic instead. Things are looking okay for me right now but if the past year has taught me anything it would be not to get so comfy as CF is certainly more unpredictable than I ever expected!

Thanks for reading this little outburst from my head.
Take Care, Soph xoxo

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