So its been a while since i felt compelled to write but tonight i feel i need to speak..
I lost my voice ...(so to speak) after several hospital admissions, fighting to improve my lung function, although months later this is still the case and the fight is more difficult than its ever been i feel the need to vent and writing has always been what i do best in these situations.
I felt lost, like i was drowning in illness, i was losing myself to the point of not recognizing myself in the mirror, it was a different person looking back at me, i looked haunted...Grey, gaunt, scared, a much slimmer bonier version of the person i once knew, i felt my will to fight slipping away from me as the numbers that showed on the lung function machine slipped lower and lower, forcing every inch of breath out of my lungs in to that machine till i was physically rocking and weak with exhaustion....the numbers slipping 60-50-45-40-35-30 within a few months, endless hospital admissions, endless antibiotics being pumped in to me, making my skin dry, rip and bleed daily, nails and hair breaking away weight slipping away as the sheer effort of breathing used up all calories, 4500 calories a day including being tube fed through my nose over night in desperate vein to shift my weight above the 6stone mark, 2 and a half stone dropped from me quicker than my will to fight was dropping!!
''I dont care enough to fight any more'' was a conversation i had one late night at the hospital with my mum as we listened to the wiring of the machines pumping a concoction of drugs to keep me well, tubes up my nose, in my veins, in my chest, wires and bags overloading the drip stand, arms blue and purple from daily blood tests to monitor my liver, kidneys, infection levels, drug levels.....
Why was i silent?? ....because i was filled with anger and negativity towards everything and everyone
Why is my silence now broken??....
Along with the death of friends came the loss of my anger at my own situation....i was alive, i was still fighting, i watched danny make his final journey to corbetts tey crematorium a few months earlier.
Im now watching and hearing more friends lose their fight to this evil disease, watching as friends wait anxiously to be listed for transplant, being told they are not eligible, or going through transplant only to then face rejection.
Young lives being lost...
One choosing to end treatment to stop the suffering, just to be at peace, and breathe easy
One waiting to be listed,
One unable to be listed,
One too scared to want to be listed
One waiting for years having been listed and waiting for a match
My heart goes out to each and every angel passed, the brave who can accept the inevitable and choose to take control of there own ending, those with enough strength in there bodies to fight each and every day...
They say you never know how strong you are until being strong is the only choice you have....never has one sentence rung so true to people with Cystic Fibrosis
The strength of these people has broke my silence and broke my own self anger and pity....im alive and will live for every fallen angel
Breath easy now and forever rest in peace.. my friends i knew for years, for those who i passed in the hospital corridors, for those whose blog i read, you were all 'friends' its just a shame cf was the thing to unite us...
'Till we meet again sleep easy <3