My CF, the real me

I heared about CF but never knew excatly what it entailed. For you to be going through all that and still have the strenght to put it here, fair play to you xxx

Hi tintin ☻

My thoughts are with both you and snugzzz xxx

@wakeupdeadisgodlike wrote:

@pennyj wrote:

That was so hard to read

I’m glad I’m not the only one who found the lack of paragraphs a problem.

me too.

have you ever tried chatting to the godforsaken upside-down crucifix wearing ku/nt ?

Well you should, he’s very cool, and one of my top 5,000 most favourite people still struggling to breathe.

Wife’s met him and just loved the geezer, and the dress he was wearing, but I only have distant memories of chats from long ago.
Which I enjoyed wake. We’re not here for ever.

Keep staying cool tins xx

(from flips as well)

@tintin wrote:

OK. I have been asked to share me health issues with you, most know I got CF ( Cystic Fibrosis ) but now a few close friends have said I should be totally honest in how I am, what CF is and what it has really done to me, how I am really feeling not just saying “yeh am ok ” when asked. This won’t be easy reading, but I warn now I want no sympathy, I hate sympathy. I merely want to make more people aware of CF and what exactly it has done to me. I’ll be blunt, I’m dying, more quickly now, every month brings more pain, less oxygen, more fatigue, less energy. I have pain in me joints, pain in me back, pain in me lungs, pain in me head, almost 70% of my body is now in constant pain. I’m on Fentanyl, Morphine, Codeine, Ibuprofen and a couple others just to get me from day to day. Then I’ve got vitamins, steroids, nebulisers and laxatives. I’ve not even mentioned the antibiotics and I.V’s yet. My last lung check showed I’ve got only a 23% lung capacity now, only about 7% away from transplant necessity. I weigh in now at only 7st, ( 101 lbs ). I have a coughing fit if I laugh, I have a coughing fit if I go kitchen an make tea, I eat and fight not to be sick an bring it back up. I suffer from constant acid, because me coughing has wedged open the valve in me stomach that stops gases getting back up into me system. I have a prop in bed to sleep sitting or I run risk of drowning in me own phlegm. With me CF I have now also developed Diabetes and Asthma too on top of the Hot Chocolate I already got to deal with. I have a snack ( mars bar etc ) i need to have 2 pills first to help digest it, I need 3-4 pills to digest a main meal. As I write this I’ve got a headache, backache, stomach cramps and murder chest pains and can’t breathe worth a make fun of. Me ribs feel like a horse has kicked me. As I sit here now I too have a reminder in me head of the doctor telling me If things stayed as they were I’d have about 18- 20 months left to live, that was in January this year!!! I always say I’m ok when asked, I hate sympathy, it’s easier to say I’m ok than to be honest and get the awwws and sorries, I don’t need that, harsh maybe but true. CF is a horrible, degenerating, slow, painful fatal illness, the first day I get to breathe free and and leave the pain in the past is the day I take me last breath. CF is a complete nice guy, so much so I wouldn’t even put me worst enemies through it. This is the truth, this is my CF.

When we lived in the UK we had a lady who cleaned and ironed for us and also babysat the kids – she was to us an angel

Her husband also suffered from CF due to his previous work

Never once did Don express regret or demand sympathy though he was reduced to being wheelchair bound and dependent on oxygen

He took great pleasure in his own children and grand-children, but also in our two kids who despite their young ages understood

Yes he eventually died and not in a comfortable way but he did so with the greatest of dignity

Though I do not know you tintin you have my utmost respect and my hope that you are able to bear your suffering

@wordsworth60 wrote:

I’m not qualified to argue, but that’s never stopped me.

So true.