One bad day, followed by another is even harder...let alone a full week, or two weeks...it just never stops.
But when the days and weeks stretch into sleepless, painful and extreme discomfort...all night - it just seems like it is not worth it all.
When your bed is the only thing you see all day. When even a shower is too much discomfort, due to your skin being so hypersensitive. And you have to take your maximum amount of medications, without an overdose - leaving you in a zombie daze and feeling too sick to eat anything. Pain radiating through body, pushing a good 10 (on a CRPS level) in pain, leaving me in tears, exhausted and feeling terrible :( How is one supposed to live like this? How is that a good quality of life?
No one can ever explain the pain from CRPS, it is so different, that sometimes words cant explain it. But most of all, it never goes away. Pain medication only dulls it for a little while, meanwhile it's still always there. Some days, the medications just do not work, unfortunately this is part of the problems with medications. They cause terrible side effects, can cause addictions (thankfully which I have avoided so far), can cause health problems and they affect your quality of life....all this and only 30% of the time do they work.
When I had a very bad week last week, where for three days, I cried in pain, I didn't sleep apart from occasional naps caused by medications, I screamed out from spasms, I cried from exhaustion, I cried from the fact nothing could help stop the pain and I cried because I wanted it to just stop; to end. But it just wouldn't.
Sometimes, you can cry so much, the tears just don't come anymore...
You cannot imagine how much more pain you can deal with, you start to give into negative thoughts and you start to give up...because it all becomes too much.
I then struggled to deal with my family, whom see my pain and exhaustion first hand. They are struggling to accept that I have this disease, that makes me scream in pain, uncontrollable pain for days - yet there is nothing that will stop it. They cannot understand why or anything about it, so it's very frustrating. I cannot help around the house, do any driving or even get out of bed to accomplish anything. As much as it not being fair on me that I am sick, it's not fair on them.
Thankfully, at the moment, not every day is extremely bad for me. Last week, Monday-Friday was...and I suffered terribly. Friday afternoon I went out shopping and ended up collapsing at the shops, unable to move, the pain rippling through my body, exhausting me. I sat for an hour, trying to regain the use of my body, before I began a slow and agonizing drive home. Then all Friday night I struggled to sleep, the pain was just too much for me to deal with. Saturday I was at hockey, the one thing that can successfully distract from me it all. By lunch time I needed to double my pain meds, but 1.30pm while watching a game, I was in so much pain, I just lay on the grass and fell asleep. Only to woken by friends worried about me, but thankfully, I just needed a nap to help work through the worst of the pain. To continue on helping with teching games, with my right arm in a sling and ankle strapped up. To the fact it affected me so bad at hockey, scared me, because normally is enough to distract me...
In the next few weeks, I have numerous medical appointments with different doctors. At this stage I am having to reassess everything. My medication is obviously not helping as much as it could; I may be faced with another medication change. The medication I take for helping with aiding sleep is also not working, but I still need to sleep and I still need to be able to function. It will be an interesting few weeks as I try and work through things. I do not how some people have done this for years on end, I barely cope now and even though I got an official diagnosis in the first week of February...the CRPS has been causing issues since October last year, which is nearly 12mths on. How can people go on like this everyday, facing the unknown and facing so much pain.
Thanks to an online Facebook group, I came across this article and while it's extremely sad to hear about this, it unfortunately has brought out a horrid side of CRPS. Last week, they provided some amazing support while I battled a horrid time...on the brink of hospitalization, where even in hospital they cannot help really - the pain is just simply beyond medical help sometimes. I have some amazing friends whom helped me through last week. Including one beautiful friend sitting on Skype with me for 4hrs, watching me as I struggled in pain, trying to help distract from it all. You really do learn whom your real friends are during these times. The lovely hugs and people checking up on me whenever I'm at various places, really makes me feel like I am appreciated and understood, even though I'm sometimes very hard to understand.
http://mooshinindy.com/2013/08/29/complex-regional-pain-syndrome-crps-rsd/
Yes I like to write and explain all about this, because I want others to learn and understand about CRPS. Why sometimes I hide behind a thin smile and the "yes, everything is fine" - I do struggle, every single day, but I try to focus on why even though I have this terrible disease, there is the hope of me sharing and educating others. To help others understand, to help those struggling with the disease and to hope one day, medically they can help to find a cure. Together, we can, together we will.
While this post might seem it's aimed at CRPS, it still applies to all chronic pain illnesses, because everyday is a struggle, no matter what type of chronic pain. Please stay strong, talk to your friends, dont hide behind a fake smile, be honest and work with it!! STAY STRONG!
Love and Life, Kate
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