HELLO everyone, thank you for taking the time to read my blog :)

This is my first 'official post' following on from my introduction. It is going to be a bit of a rhetorical blog about pain and a few experiences I'd like to share with you. A friend of mine who also has CF recently blogged about her perceptions of pain and how it affects her and those around her, which made me think about my own pain because I suffer a great deal with it, not everyone with my illness has pain but I get a lot of chest pains (stabbing pains when I breathe in, or out deeply) I also get arthritic joint pain. I can't speak for everybody with CF because we aren't all the same but I can share my own experiences and what I deem to be 'painful.'

It's really hard to determine how much pain somebody is in, I could write in as much detail as possible how much pain I am in every single day, but nobody will truly know unless they were in my body, the same way I will never understand another person's pain. We can all empathise and sympathise with each other but we can never truly know how they really feel.
I think I've been through quite a lot of 'painful' things in my life - I have had multiple operations, nasty procedures, many blood tests, lines and tubes inserted, also uncomfortable tests and health aside I also broke my wrist at high school, looking back it's a funny story - I was showing off how high I could kick my leg in P.E, stupidly I was wearing socks on a slippery gym hall floor and to cut a long story short, my leg flew over my head and I landed on my wrist. Crack. Ouch. Broken!
One particular health procedure that I vividly remember, was when I was 16-years-old and I had an operation to remove a 'Port-a-Cath' (which is a small plastic device under the skin which is used to give IV antibiotics without having to keep using lines and veins.)
It was removed because mine had got very badly infected, it looked extremely nasty and was very swollen. So after the surgery, the wound needed to be kept open, to minimise the risk of more infection, but mainly because if the wound was left to heal naturally it wouldn't heal from the bottom up, it would just join together on the surface and it would leave a hole under the scar tissue.
Well this was horrible, to put it as bluntly as I can, it meant stuffing the new wound with cotton wool using tweezers whilst holding the wound open. I remember screaming in pain and squeezing my Mum's hand so hard I'm surprised it didn't break!!
Anyway, just thought I would share a couple of different, painful experience but the example I mainly want to talk about is my recent lung collapses...
Between February and March I had 3 lung collapses, for me this was the most pain I've ever experienced, it began as a deep stabbing pain in my lung, which spread throughout the whole top of my lung, the pain also spread up my shoulder and right up my neck. It lasted about 3 minutes until the pain eased a bit (with the help of fast acting morphine) but it was then replaced by severe breathlessness and an uncomfortable ache deep within my lung.
The worst bit about a large lung collapse (2 of mine were big collapses, the 3rd was smaller and went away without medical intervention) is that they require an equally painful procedure to fix them - a chest drain. This is a small tube inserted into the lung, but to start with I was injected with local anaesthetic which I'd describe as an instant stinging pain lasting around 5 seconds, then the area goes numb. But this only numbs the surface so I then had to have another injection of local into my actual lung, sounds painful right?! It sure was! To me this was worse than the collapse itself.
The whole procedure was pretty uncomfortable while they were getting the tube into the air pocket in my lung, it was all done under CT scan so couldn't be rushed, they had to keep stopping and re-scanning me to ensure they were in the right place. Once the tube was in and the air came out, my lung began to re-inflate itself, this also was painful as my lung was essentially stretching back to where it was - I'd describe this pain as extremely uncomfortable but also having the drain in itself hurt and wasn't the most pleasant thing to have to deal with, it was all taped up and secured but it didn't stop me accidentally pulling it several times a day and particularly whilst sleeping.
I had to have the first drain in for 3 days, the second collapse was worse and required it to be in longer it was about 5/6 days. Thankfully the easiest part of the whole ordeal was having the tube removed, the worst bit was having all the plasters and stitch taken out, but compared to the rest of it, this was pretty much pain-free!
I was extremely pleased that the 3rd one was a very small collapse, so I still had the initial pain and the breathlessness but it didn't require a drain, just stronger IV antibiotics, close monitoring and it meant I had to increase my oxygen intake.
However, since the collapses I haven't managed to come off the oxygen so I am now on it 24/7 and will be up until I get my transplant. It also damaged more of my lungs and made me lose a lot of my lung function, which is now 12/13%.
Throughout the duration of the collapses and drains, I was dosed up on strong pain killers yet I was still in a lot of discomfort, so I'm keeping my fingers crossed it doesn't happen again because it isn't just the fact it hurt, but also because my lungs are now so weak and damaged, I may not survive another one.
Now I'd like to compare to another painful thing that happened recently, I thought I had broken my arm after I got tangled in my oxygen wire and ended up tripping over my dogs. I fell on my arm and there was a nasty crack, I couldn't move it without severe pain but I stuck it out for a day because I thought I'd wait and see if it went away. But then the pain got a lot worse over the next day and so did the swelling, so I decided to go to A&E for an X-ray (thankfully it wasn't broken but the swelling was pressing on a nerve causing nerve pain and I'd also bruised the bone.)
It was a different kind of pain to the collapse, more like an uncomfortable ache, like a dead weight, it wasn't as painful as the collapse/drain, but it went on for a longer period of time, my arm is still in a sling now and still causing me some discomfort.
During the collapses and the drains insertions, I found it really difficult to communicate to anyone just how much pain I was in. When you are in hospital they ask you to give pain scores of 0-10, 10 being the worst pain ever. I felt like I wanted to say 10 every time during the collapse but it made me wonder, is this how everyone feels when they have a collapse or was I just being a baby? Is it actually not painful at all and only warranted a 1/2 on the pain scale?! Or could it be that it is extremely painful and I was actually really strong going through it, not only once but 3 times?
As I said, we never know other peoples pain and everybody has a different pain threshold, what could hurt me, may be nothing to another person and vice versa. I never understand the pain scale because we are so different, I could say something is only a 5 when someone else may be a 9, so who is right??
My question is - How do we define pain, how do we decide when someone is hurting enough to give them sympathy?
To explain my thoughts, I'll summarise the differences between the 3 recent pain experiences I've spoken about -
Firstly, the collapse itself was short, sharp and extremely agonising, but it settled quickly and was replaced by a lesser pain, but still very sore and uncomfortable.
Secondly, the chest drain procedure was, again, agonising but after the lung began re-inflating, the pain settled down and became an annoying ache deep in my lungm but it was well controlled by pain killers.
Finally, my damaged arm, the pain, the crack sound and the limited movement was all instant and painful, but then it gradually changed and became sore, it wasn't as painful as the others but the fact it lasted longer and is still hurting a week on makes it a valid painful point!
So which is worse? In my experience and having gone through them all recently, I would definitely say the collapse was worse, then the drain insertion is a very close second, then the damaged arm is definitely last, because it doesn't matter whether it lasts 1 minute or 1 year, pain like that isn't easy to tolerate. I'd rather go through months of a dull ache, than a week of severe pain.
Everybody is different though, others may not agree with me, but as I said at the start of this post, unless we all go through the exact same things, we can never fully understand each others pain. We need to walk a mile in someone else's shoes to get an idea as to how they feel and even then, that's not enough.
Pain, it's a funny thing isn't it? Well, not that it's exactly fun(!) but it's something we all know exists and we all experience pain of some sort in our lives, some more than others. Some people can tolerate a lot of pain before they are reduced to tears, others can't tolerate any pain at all, my pain threshold may be really high, or it could be low, but really we will never know how well, or how badly, we cope with pain because we can't out ourselves into somebody else's body, I wish we could, it would be great if I said to somebody "I'm having a really tough day today, my breathing is very difficult, my chest hurts, my joints are sore and swollen from my arthritis and I feel exhausted" then that person could jump into my body and feel exactly how I feel, that would be great.
But as of yet, a body/mind swapping device hasn't been invented so we will have to continue empathising and imagining how another person may be feeling...
I hope you've enjoyed reading my blog and it wasn't too painful for you ;)
Kerry x