[Aside] Thoughts on pain levels

One of the biggest things that stands out to me as a chronic pain sufferer is that most people expect you to be pain free after you take your painkillers. Like it’s as simple as a headache, you pop a few pills and you’re on your way again.

So many people don’t seem to understand that it’s not about pain elimination, but about pain management. The reality of the matter for most chronic pain sufferers is thst you never actually get that “ahh” moment when you’re entirely pain free, but you adopt a new system wherein you have acceptable and unacceptable levels of pain. You expect every day to greet you with a certain level of pain and, after a while,ย  that becomes your norm or average. Any deviation from that new setting becomes unacceptable and that’s when you end up undertaking pain management, because trying to get back to the previous norm of ‘painfree’ is entirely unrealistic and you will simply end up making yourself sick on painkillers before you get there.

To put it simply,ย  us pain kitties simply run on a more exaggerated pain management system to healthy people. The principles are still the same, we justย  have a different base line for pain to most other people.

On another note, I’m enjoying the idea of ‘microblogging’ in the sense of me sharing smaller thoughts with you all, rather than one big, several – page – long blog once a fortnight. I’m also going to keep trying out the new post settings until I find something I like for this format. I noticed there was no actual discernable change between my normal journal and my status update,ย  so I’m giving the ‘aside’ setting a go today.

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Ups and downs

Good news everybody!

Yesterday, despite all the runabout and fuss, I finally got my diagnosis of Fibromyalgia and CFS. After 10 years of chasing the reason I’m in crippling pain day in and out, I finally have clinical proof that it’s not in my head. I was in a stupid amount of pain, but I was just about ready to click my heels and dance down the hallways of the hospital on my way out from the specialist appointment. It’s amazing how something so minute in the scheme of things can mean so much and change everything.

When I was a sproglet, I was told everything from “it’s in your head” to “it’s just growing pains”. I was told it would vanish by the time I was 18, not get worse to the point where my pet name amongst friends is ‘cripple’. So, it’s a massive weight off my chest to know several things at this point:

1. My pain is valid. Hell, I am valid in feeling the way I do. I like that word. Valid.
2. The source of pain is what I suspected all these years. Fortunately it’s just going to hurt like fucking hell and won’t kill me. That’s the biggest thing that had me worried.

3. Now that I know what my enemy is, half the battle is done. I can go about pain management and getting my life back on track.

4. Now that I have a diagnosis, I can do things that have been put off for years – applying for disability pension to keep a roof over my head and getting a parking permit for the really bad days.

 

I will totally be having a diagnosis party when I can get some free time ๐Ÿ™‚ I think it’s the ultimate way to celebrate the closing of that chapter of my life. No more chasing doctors for referrals! No more having to explain my life story to random gits and get poked and prodded and judged! No more cold hospital smell!

Shire horses on Juist

Shire horses on Juist (Photo credit: gerriet)

After all the stress of the appointment, manthing took me to see the Shire stud owned by a family friends. It really is amazing how pain melts away when you’re around animals you love. We spent hours there and talked and talked and talked about all sorts of things and then it was feeding time for the gentle giants. I still can’t get over just how HUGE these horses are (and I own an Irish Wolfhound. I know big!) and just how amazingly gentle they are with people. Cheeky, sooky, lovely things! We watched them play musical chairs with the feed buckets and I got to see just how big a 9-month-old foal is. My god, she’s bigger than my car! I only wish I had taken some photos, but there’ll be another time.

I spent so long running around with the horses that I completely forgot how damn sore I was until we got home. At which point I sooked a little myself, had a hot shower and my usual painkillers and moped in front of the PC for a while. I couldn’t even finish my dinner at that point, so I eventually climbed into bed and snuggled the snot out of manthing while I played Pokemon. At 5am, my body decided to give me the “Oh god why” wake up call that involved hobbling my way to another hot shower, stuffing down more painkillers and curling up in a little ball next to manthing and leeching all the warmth I could off him.

Thus far, today hasn’t been much better. I didn’t sleep well, so I’m all over the place, but I got up and pottered about for a while before I was told to go back to bed before I had another major pain flare. Unfortunately, I wasn’t quick enough and I had just fallen asleep when my hips started screaming worse than before, so I’m sitting here right now with painkillers swimming about my eyeballs, pleading with my body to let them work quick enough and generally trying to distract myself until they kick in. On the upside, it’s a bloody beautiful day here today, warm enough for me to not hurt from the temperature for a change (just from everything else instead!) and later on tonight I get to see a bunch of friends for a gaming session, so that should be heaps of fun ๐Ÿ™‚ It’s all about the little things!

Thanks for reading! You know, before I started blogging about my adventures, I would never have believed so strongly in the support of strangers, yet now I find myself smiling with the few comments I get and really trying to keep my word when I say I’m going to update because I know someone out there is going to read it ๐Ÿ™‚