Saturday, 23 April 2011

Catch Up.

I am so fed up with being out of breath all. the. damn. time!!!

I've been thinking a lot about 'understanding CF.' The fact I am still learning things now proves that you never know the full ins and outs of everything. Sometimes I expect people to understand what I go through, but unless those people have lived with CF, they could never fully understand. Likewise, myself, I could never understand what it's like to go on a diet, or to battle other various diseases, I could sympathise and imagine what they must go through, but never truly know what it's like!

That's kind of how I decided on my blog name 'Come walk in my shoes' I wanted my blog to be a way of people understanding what it is like living with CF, in the most honest way I could explain it! As they say, you can't judge someone until you have walked a mile in their shoes. You can read online until the cows come home about CF but hearing it from someone who actually has CF would probably be more reputable than someone who has never lived with this disease.

I think blogging is a really good thing, when I was younger and trying to live as a teenager with CF, it was difficult. We aren't allowed to mix with each other due to cross infection, if we met up with another person with CF we could potentially pass bugs onto each other and cause damage!
It's weird to say but thanks to the internet I no longer feel alone, as I said, when I was 14/15 I knew a few people from clinic with CF but not many, whereas the internet has opened me up to the whole CF community. People from all over the world! It has made me realise there are so many other people out there just like me, who are going through exactly the same problems that I do.
A lot of people say the internet is a bad thing and it has ruined childhood nowadays blah blah, but without the internet I wouldn't know so many wonderful, inspiring, people. I wouldn't be able to seek advice from people who've experienced these things, I wouldn't have people to chat to who are also going through transplant, or those who received their transplants! The best bit for me is knowing that there are people out there who can 100% completely understand, people I could even go as far as calling my friends :).

Anyway, on to how I'm actually feeling at the moment. The truth is, I'm not great. I'm really struggling, I'm just doing a pretty good job at hiding it as always.
I noticed how bad I was actually feeling when I got up earlier to walk into the kitchen, I was so out of breath from the tiny walk that I had to try and catch my breath, by the time I got back to the comfort of my sofa, I was so tired and exhausted I wanted to cry, but even if I started crying I'd have got even more out of breath! Lol!!! It feels like even getting dressed is too tiring now, so spending a lot of time in my pyjamas. I'm starting to get really fed up and can't wait to hurry up and actually get listed for transplant, so at least I could see a potential light at the end of the tunnel. At the moment, I'm in limbo, stuck in the middle of nowhere, there's no chance that lungs are coming my way yet, so I just have to carry on living like this.

Last night was my local teams derby match, against our rivals so being a season ticket holder (although I haven't made it to many games due to how unwell I've been lately) I couldn't miss the most anticipated game of the season. We park disabled so it's not too far away from the ground, but it's still a walk nonetheless, then when I got into the ground I had to climb stairs to get to my seat. By the time I'd finally sat down I was exhausted, the match was a disaster and we lost 5-1 which is an absolute embarrassment. I wish I'd stayed at home. After the game, we then walked back to the car, but I had to get Josh to give me a piggy-back :( This then set up for a rubbish night, as I'd wasted the only little bit of energy I have nowadays at the game. I did however, get a Bovril out of it, so as they say, every cloud has a silver lining :)

I had my chat with the Evening Star on Monday, it went really well and think it should be in the paper either Sat/Monday, obviously I'll post the link to the website for those who want to read it online! I'm hoping I came across well, I tend to talk a bit too much so not sure how it will be yet! I guess despite my rubbish lungs, I can talk for England!!! Haha :D

I have definitely qualified for the poker finals on the 1st May, so looking forward to that, then on the 3rd May (if there is a bed available) I will begin my 2-3 weeks of HELL in Papworth hospital - so you can guarantee there will be plenty of blogging updates from me whilst in prison. I hate hate hate going into hospital as you can probably tell!!! Lol :(

Guess I'm just rambling now. So sincere apologies if I have just bored or wasted some precious minutes of your life, haha!!!!
Thanks for reading, I hope this finds you well :)


mogzi said...

Sorry the breathlessness is getting too you! Hopefully the hospital visit wont be too HELLISH! and you will come out feeling alot better. I know how you feel with hospitals, I have a phobia of staying in really! get so worked up about it all. SO really hope it goes ok! and do keep us all updated! xx

Jess said...

I know no longer had energy to cry either before transplant so I just didnt. Kept it all inside. So after transplant, I cried a lot! Mostly because I just could! I hope you get listed and transplanted soon.