65 Roses?....A beautiful way of saying Cystic Fibrosis, however does not make CF any more beautiful. My wish is to be standing untarnished, unbreakable, breathing easily.... A blog that is about my day to day life, as well as trying to cope with my illness Cystic Fibrosis. There will be no hold backs just me...out in the open, hope you enjoy! xXx

Friday, 11 October 2013

Learning to listen

The hardest thing, by far, in batteling CF is learning.
Learning to adjust and learning how to listen.

Over the years my knowledge of CF has come on leaps and bounds , I understand the terminology, the facts, the science & how it affects the body,  I can picture what it is doing, I can feel what it is doing.
But the most valuable lesson I have learnt, is to listen to my own body as over the years it has required so much more.

I used to work in an office for an events complex, 6 hours a day, answering phones, taking bookings, payments, banking, ordering things the Buisness needed, and I enjoyed it, mainly due to the fact that I worked with family.
I also was the bar superviser for the same place, so would run the bar at weekends.
I loved my job, I liked speaking to people and I liked having a purpose to get up in the morning.
I left my job two years ago, as the hospital admissions increased, I was having more and more time off, and when I was there I felt less than useless, I couldn't be on my feet at the bar so would find myself sneaking of just to sit down and catch my breath.
I was deliriously tired during the day and was making mistakes in the office, booking people in for the wrong event, miscalculating the PDQ machine. My treatment was majorly neglected and put on the back burner as I was simply too exhausted to do it all.
So a vicious circle of missing treatment, feeling ill, working, feeling tired, so missing more treatment began.
My health made quite a sudden decline from a fairly acceptable 60 % to 40%
I decided to leave work and focus on my health before much more damage was done.
Learning to adjust to the increased regime was tough, I would wake up in the morning, feeling depressed and like I didn't have a purpose, I'd just roll over and sleep hours away, treatment still being neglected.
After many months of being stuck in a rut and more lung function decline, I decided things needed to change.
My adherence increased, I wasn't missing medications, I learnt to admit myself for Ivs as soon as I was poorly not waiting for weeks on end declining at home, convincing myself I was fine.
A year on from this my health still was not particularly going in the right direction. My lung function now sitting in the 30s, my treatment regime was to increase again
My lungs functioning on such a low level meant I could no longer do the things I would do with ease.
I used to get up do the housework, walk the dog, go to work, socialise, go clubbing and drink far to much. Nothing particularly needed much effort or pre planning.

Learning to adjust to my new life was quite a roller coaster, pre planning trips became the norm.
I could only manage 1-2 tasks per day, maybe a bit of shopping or seeing a friend, maybe light housework the next day. And mostly learning to adjust to a life with oxygen.
My mind is extremely active, too active infact, in the mornings it will plan a full day of things to do, when in reality my body Is struggling to keep up with my mind.
Many a time I would completely ignore my body and push it so hard to do the things my mind so wanted me to do, then at the end of the day when my body was screaming in pain and exhaustion I would beat myself up "why did you push yourself that hard" " your not superwomen" " you can't do this anymore"
I would fall in to bed, not just tired but exhausted, my lungs protesting with any movement, the cough causing tearing pain through my ribcage, my head feeling like it would explode from the pressure of coughing. My bones would hurt, I'd be curled up like an old lady, I'd even shake from pain and fatigue, my mind nothing but fuzz as it tried to contemplate the day and how I went wrong, how I caused myself to get in this state.
Over these months the adjustment period to what I can and can't do was actually harder than adjusting to my state of health, I knew I was poorly but actually having to change my life was something I felt far to much. I could accept I was Ill, that I had cf, that I wasn't inevitable but I couldn't seem to accept the limitations that came with it.
I was causing myself to be iller with my stubbornness.
My body was exhausted but my mind still so willing.
As time has gone on the learning process has been a great one, and one that has empowered me in a different way. As annoying as rest days are, they encourage me to focus my energy elsewhere.

Today is one of those days.

After a few days of what my body classes as strenuous, I have decided to take a day out, I'm in bed with daytime home makeover programmes, tea and plenty of snacks, I'm doing extra nebulisers and lots and lots of gentle physio.
Keeping my chest clear will always be an essential but to rest my body is more essential than that.
This however does not cure that pesky brain that runs a 2000 miles an hour.
Another learning curve was the lesson in focusing the energy my mind has.
I won't go in too to much detail just now as I don't wish to jinx any of my plans, but I have been extremely pro activ towards causes that are close to my heart. Obviously Cystic Fibrosis, but also organ donation, while my body is resting in my extremely comfortable bed my mind is as ever, busy. 
Im eMailing and arranging events to raise awareness to both CF and organ donation.
I have made a few contacts and lets just say that hopefully you will be seeing a little more of me in a an exciting way.
Once things are a little more sorted out I will share my plans with you, but for now its a work in progress :) 

Learning never exhausts the mind - Leonardo Da Vinci

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