Exercise Exercise and a Little Learning ....

I went to sleep last night at 10.00pm. I woke up today at 12.45pm this afternoon....And i do meant slept!!!
Its not uncommon for me to be in bed for that many hours but to actually be asleep for that amount of time is shocking, im usually woken up 3-4 times a night by an angry chest, I'll wake up coughing, or in pain and twitch myself awake, or wheeze loudly or just to pee.
Each time i wake im usually up for a good half hour coughing and trying to get in a comfortable pain free position.
But last night i well and truly had a much deserved SLEEP!! Still exhausted from Fridays clinic followed by a restless nights sleep Friday, questions still filling my head i think my body was well and truly exhausted. I felt amazing for the sleep!!!

After the usual routine of morning medications, physio and a nice hot bath to soothe my muscles i met Clare in Starbucks for a lovely much needed caramel macchiatto, when id got there she had already ordered my drink and managed to get the comfy sofa :) She always manages to get it, she just stands over the people on it and they eventually leave, shes a sofa bully lol :) It was bloody freezing out so i got comfy with my legs tucked under me while i snuggled in to the heat of the coffee...Mmmm was yummy!!!

My lovely clarebear really cheered me up today and she probably doesn't even know it. We sat for hours in Starbucks discussing our health, how hers has come on leaps and bounds as she has doubled her lung function over the last 2 years through sheer hard work and determination.
She was my 'sick' friend for a long time, i was the one with great lung function with an active social life while she struggled day to day to do minor jobs just as i do now. We were laughing at the complete role reversal between us as she now has my lung function and i have hers.
It was fun reminiscing but a part of me felt sad for my past health, i felt like the girl i was 2 years ago was long gone and buried, like i would never have her smile, her zest for life, her social life, her bright eyes. I almost mourn her as i do feel sometimes i will never be her again and the ghost of my former self is slipping further and further from my memories.

As we were sitting there we spoke of clares blog which she has kept for 3 years now, i sat and read from the first one she ever wrote last night, to the current day. I cried and laughed throughout. It was horrible remembering how she was so ill, spending weeks in intensive care but it was the 'norm' for her and although every time she went there it was horrible to deal with, it was never a shock to me it was expected. I never expected her to be alive now, i prepared myself many times for her death but each time she managed to claw back some strength to fight.

I look at her today and she makes me so proud, i love this girl more than i can explain, she is my best friend, the kind of friend who knows me in and out she doesn't need to ask how i am she just knows, shes caring and is always there for me, shes like another sister to me..shes my hero and my inspiration....
Inspiration really being the key word, i watch her strength day to day and admire how she has turned her life around, she makes me feel i can do it to.
So as i sat mourning for the healthy girl i once was i almost started to mourn for the sick girl i am now, mourning in a good way because i know i have the strength to somehow try and make a better life for myself too.

I would love my lung function to stay at 48% which is what it normally is after iv's.
A lot of cardiovascular work will help the elasticity in my lungs which in turn will mean they are stronger so when infection does hit it may mean my lung function may drop to early 40S not 30's

I have never been afraid of admitting i am a complete gym-a-phobe!! i hate the gym with a passion so cardiovascular exercise is quite hard to do...i love to swim and i love yoga, i love going out on my bike (in the summer) and walking with my dogs so i need to find a way of getting my heart pumping more with the exercise i do enjoy, then maybe once my overall strength has improved i will tolerate the gym better. Its a small step towards the right path but i am positive.

In clinic Friday, as i said, i felt quite bullied. My Dr was saying she is happy with the way i respond to treatments in hospitals but worries at how quickly i decline at home.
At first i felt she was questioning my compliance which upset me so much as a few years ago i was very neglectful with my treatments and was very honest with my team about that fact, but my lungs were in better condition then and infections wouldn't affect me as much as they do now.
As most of you know cf is a degenerative condition, meaning that over time your lungs will inevitably get worse resulting in lung transplantation. You can never stop that process as it is the nature of cf and cf is incurable. However there are ways to slow the decline. Exercise and compliance with all treatments being just 2 of those factors.
So as i can honestly say my compliance is nigh on 99% of the time i feel that exercise and a more structured daily physio therapy plan is the only way for me to go now if im to avoid a transplant in the next few years.

Now for a little CF lesson.....

Getting sputum off of my lungs is so important, as my lungs and airways do not shift mucus naturally from the airways. This is due to an imbalance in the bodies natural salt and sodium movements.
The mucus gets trapped in the airways allowing a perfect breeding ground for them germs to feed and bread.
So basically if the sputum in the lungs is moved out and along the airways to the mouth where it is swallowed or coughed out the less there is for the bugs to breed on.
In a 'normal' or healthy body this happens effortlessly and mucus is moved perfectly from the lungs by the CILIA (small hairs that move in a wafting like motion inside the lungs and airways) in to the mouth where it is then swallowed without you noticing.
This process in cf does not work hence the build up of mucus in the lungs resulting in infections, which in tern create scar tissue which is concrete like.
Once it reaches this stage it is irreversible. Lung function will drop and the lungs shut down where the scarring is making the lungs smaller and smaller...so you can see why clearance of the chest is so important.
Anti biotics kill a lot of the bugs but alone will not work and has to work hand in hand with clearing mucus to be most effective.

As i am on maximum doses of the drugs i take, i know the only thing that will help me now is more physio to clear my chest.
This responsability falls down solely to me. I can get support and advise from my team on how best to do this but really it is only me that can do it.... so i know this is where i need to focus my attention now.

When i am admitted next week i am sure to spend enough time with the physios to help me with a structured but manageable plan for me to continue at home.
The physio regime you have in hospital is not realistic at home, as you do not have all day to do 3-4 sessions a day.


Physio and exercise in the hospitals gym is the thing that works amazingly well for me in hospital, so i know it is the thing lacking at home which is resulting in such fast declines.
Proving that medication alone is not enough.
Its the thing i need to work on most.
I have faith in my physiotherapy team and know we can come up with something viable once home.

I'm willing to try anything to help get me back to the girl of 2 years ago..i miss her!!