This Monday Memory is bought to you by the fact that I'm pretty pissed off at the moment
Did I Ever Tell You About The Last Time I Went A Whole Day With NO Pain?
No? Well that doesn't surprise me being as it's only a vague memory for me... I was about 14 at the time (now 24) and to be honest I can't really remember not having pain... I can remember roughly when my pain started and I can remember all the various half arsed explanations for why I have pain but I can't really remember not being in pain.
My pain started in my back and at the moment my back is really hurting me. But you know what, it hurts me everyday. when I mention that it's really hurting me I mean it's hurting me more than it usually does. Sometimes I barely notice my pain because I'm so used to it. My normal includes pain. My doctors can't decide why this is but basically the key point in all their stupid explanations is it's a CP related thing.
My shoulders ache at times - thats what being in a manual wheelchair does for you and chances are it;s only going to get worse. But that's sure as hell better than the alternative.
I have hip pain (pretty severe at times) in the hip of my "good leg" caused my doctors believe because due to how spastic my left leg (bad leg) is my right leg (better leg - i have cp in both but less so in this one) takes all the strain when I stand/walk/transfer and to put it in the best medical term I can with my limited knowledge - after 24 years of that it's fucked.
Some people have tried to convince me that because I realise my situation may get worse i'm setting myself up and it will get worse. Others tell me that they think I take too much medication and this is part of my problem with pain.
Until I began to have issues with my hip about 16 months ago the only medication I took was my antidepressant. Now I take a muscle relaxant (baclofen) which helps me a lot with my spasticity and reduces my pain. I take a regular dose and also a little as prn if I'm feeling particularly spastic that day. I also take co-codamol 8/500mg on a prn basis when my pain is at its worst. That was a new thing with my hip too.
I haven't taken any painkillers for a long time tho... I use repositioning, hot water, and heat packs whenever possible to deal with my pain and save the co-codamol for when things are bad or when I'm in situaitons where I can't reposition etc.
I push past my pain as much as I can. Today it is ruling the day but that was MY choice. Tomorrow is Naidex - a once a year thing I'm really looking forward to. So I chose to stay home and spend as much time as possible out of my chair etc in the hopes I can prevent it being bad tomorrow.
I might be in pain but I do not need your pity. I can't remember being pain free sure but I can function despite it and my life is good. I am very very blessed that I am not in more pain and I give thanks for that everyday. But I just wish more people could have the awareness of how lucky they are.
Links to other participants (monday memories only please!)
4 comments:
Most of us have no concept of constant pain. Thank you for opening the window for us for a look at your life.
My MM is up.
http://collectingmythoughts.blogspot.com/2006/04/monday-memories-did-i-ever-tell-you_24.html
I want to say I understand because I can't remember the last time I didn't have a headache, but I know it's nothing like what you are going through. I hope you told the people who said it's because you take to much medication to bugger off. If you don't have pain, you don't get it. That's the same as people telling me if I cleanse by body, I won't have allergies.
My MM is up. Stop by and say hi
People who've never experienced real pain, especially chronic pain, often don't know how to respond and sometimes say stupid things.
Have you read any of A.W. Tozer's work? He talks about the "fellowship of suffering" that creates a special bond between people who have experienced real, deep pain. It's an interesting concept.
I know my experience is probably minimal in comparison to yours, but who can really compare pain? Anyway, I thought you might be interested in reading part of my story--there's a link in this post to more detail.
I surfed in from the Technorati listing of last week's Monday Memories.
I don't have CP, and I'm not trying to make comparisons, but I do have pain issues (severe frequent migraines and fibromyalgia) so I try to stay on top of the thinking in pain control fields. It's very easy for people without chronic pain to assume that if you had a better attitude your pain would be better, or that your illness is getting worse because of a bad attitude. I really do think they're trying to be helpful, but it can get really frustrating!
The World Health Organization announced in 2004 that treatment to alleviate pain is a human right. It's kind of scary that they have to say something like that, but having seen first hand some doctors' beliefs about pain control I guess this concept is not common sense like I would have thought.
Hugs to you, and I hope there is some combination of therapies, medications, treatments or whatever it takes to help alleviate some of the stress and pain your body is under.
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