How my Life has changed

As i explained in my previous post i would explain more in depth a few things i thought I'd start of with how i was as a child, doing everything i wanted to do to how i am now struggling to go out for any length of time the major organisation if i do want to go out or stay out over night, also to the point of not planning as you almost know that something will go wrong if you do.....

Well as i touched upon in the first post, I used to read all the information on CF and think ''what is it on about'' I'm well i can do anything someone without CF does so whats the big deal i just have to take a few tablets. As a child i used to play football, play rugby, gymnastics, netball, then on a evening and weekend i went swimming, dancing and horse riding which were all important towards keeping healthy and sometimes i could do an activity as physio which i preferred to do. I was able to do all these until about 10-12....I did start struggling with running the school cross country which i used to detest, knowing full well I'd be last, and I'd have to stop a few times to catch my breath, sports days were another personal hate, i must have been the worst one at every thing, but it wasn't the winning it was the taking part, n what was easy for everyone else i had to put double effort in... On the rare occasion i did achieve a 2nd or 3rd  i was proud of my achievement


 Then it came to swimming, well nobody could stop me, i swam for school and always got 1st or 2nd place, i swam for Yorkshire and came a grand old 1st again, at least this was 1 thing i was good at that was great for my health, but slowly i got able to do less and less.... i stopped dancing, i stopped horse riding, and then i joined a gym n went most teatimes catching the bus from school. I'd often do an hour cardio and few weights, then go for a swim in the pool after, then as time went on i used to do less and less lengths of the pool as I'd get out of breath and end up coughing and spluttering which people used to turn and look at... slowly i started not doing as much cardio so i could enjoy my swim afterwards, after all it isn't just about exercise it's about enjoying it too, then i noticed a change.....i didn't feel up to doing any work in the gym n just went straight for a swim, which i suppose was better than nothing but looking back i wished I'd listened more to my body n pushed myself or asked for an extra set of IVs when i noticed not being able to do as much, before long going to the gym became a chore, so rather than paying a membership decided it'd be cheaper to just pay at a local pool if i wanted to swim, but i soon got out of the habit, and i didn't do much at all, even walking up and down to the bus stop  which is about 300m from our house was a hard walk so I'd ask mum to run me up for the bus etc, until i got a scooter. This was great i could get up n go without the dreaded thought of walking up to the bus stop as on one occasion the bus ride was hell, i couldn't stop coughing the elderly person in front of me got up from their seat n moved as far away as possible, i walked past them on the way to get off the bus, and just said 'it's not contagious i have cystic fibrosis' they looked confused, i then said 'Nothing is more terrible than to see ignorance in action.' 

By this time i was at college, I'd b able to park near the doors which was great but the stairs up to the classroom were a challenge in themselves, but i eventually made it, then my health dipped spending more time in hospital struggling to do my college work as i missed a lot of the lessons,  then i seemed to just plod along like this for a few years up until i caught the swine flu. This was the time when i realised after that i couldn't manage a sneaky night off my oxygen, as i paid for it the next day.... i struggled to even go shopping, without a rest, (thankfully i hate shopping) just little things i missed, all the information i read when i was younger was turning out to be true, i wasn't as well as i used to be.


I moved out of my mums and got my own place, i really started making an effort making sure i didn't miss any treatments, in all honesty someone that has said they never miss a treatment I'd say they weren't being exactly truthful (if you can honestly say you've never missed a treatment i will personally issue you with a gold medal) i managed, i got my shopping had friends round did washing and ironing, made my bed all of which i took for granted at mum's but was still able to do them although i didn't enjoy it it got done, then i moved house again just to round the corner, better parking etc, managed had help decorating got it looking decent, then things got harder taking my dog on a walk was a chore i didn't enjoy it anymore as i got so out of breath n uncomfortable i felt like my lungs were erupting every time i did anything on the exercise front then making the bed got harder walking up and down stairs loading and unloading the car with food shopping, not even a breath to spare to think about putting it away, I wouldn't admit defeat! i was going to manage! Things really got too hard n ended up with my dad picking me up and taking me to mum's to be looked after, 2days later ending up in hospital with swine flu...

It was then after the swine flu i really struggled to do anything, walking to my car, cooking dinner, having a bath/shower washing my hair even setting my night feed up was a problem, i couldn't manage! i needed help! , i realised my weight was going to take a dramatic decline.. walking downstairs was a chore... I'd already got a medical fridge upstairs so i ended up taking my bread n cheese n mushrooms upstairs n put them in there (at least i could make myself a cheese and mushroom toastie) i often threw some chicken and mushrooms in a pan with cream for dinner as it was easy, n i had to get downstairs to let my dog out in the garden, a friend of mine took her out for a walk sometimes... I went to stay at mum's for some help i still struggled, even at mums just going up and down the stairs once a day to eat a meal which had been made for me 

I suppose i didn't really know how lucky i was to have my health, breathing i took for granted n it really has made me realise how ill i have got... If i want to go out it takes me an hour to wake my lungs up and to come off the NIV, a bath n get dressed and ready used to take me 30mins it now takes an hour with extreme exhaustion afterwards (i just think is it really worth the hassle) then i have to walk downstairs, get my IVs sorted,get my oxygen filled up (which mum usually does) get to my car then it's like I'm on a time bomb with my oxygen, making sure it doesn't run out as how will i manage if it does? what if something goes wrong with the oxygen? i cant go too far from home just in case, i then have to set time aside for my IVs which sometimes i take out with me for flexibility as I'm on them 3x a day, if i did want to stop out over night that's a whole new task to move my oxygen concentrator, take my NIV, tablets, IVs, night feed i can maybe miss a night or so at the moment as the steroids helped me gain some weight. All in all is it really worth it? do i want everyone to see me on the NIV? I feel it makes me look like i am ill, or is that just the reality of how damaged my lungs have now become?


We never do know what we have until it's gone n now my health has gone what have i got left? I keep on going because failure IS NOT an option and i know there is light at the end of the tunnel. 


I once got told breathing through a narrow red straw (the type you get on calypso cups) while holding your nose is how somebody with cystic fibrosis breathes, if u can manage that just at rest try doing some exercise with it see how u cope with everyday life 


Keep Smiling :D
Jess xx