It's really not until I'm talking to someone else about the myriad joys of being chronically ill and they mention certain types of pain, that I realise that hey I have pain, I have pain daily. How did I miss this? I take the pills, I grab the heat packs or the ice packs and yet somehow I missed the connection of why. I have even had physio for pain, even when I was in hospital for Bob I also ended up in the pain group. I know I'm dull but I didn't realise I was that dull. Somehow I've managed to put that little gem away for safe keeping, and like my gold locket and my ipod head phones, I've forgotten where that place is, or that I had even had them.
If I think back, pain and I have been hanging out for a while. When I was 12, I was diagnosed with juvenile arthritis. Now there was a fun period in my life. Swollen joints that were so painful even the gentlest touch felt like someone was beating me with a sledge hammer. Of course having my hands bandaged each day for support and protection made me so attractive to the opposite sex. I was of course beating them off with a stick clasped gingerly in my white cotton clad hands. Hell who wouldn't want to date the girl that smelt like Bengay and dressed like an extra from The Mummy (1932, none of this modern crap).
(What guy wouldn't want to date me, The Gore Master).
My joy was further compounded by the fact that my pesky hips didn't want to stay in their sockets. Get out of bed, hip pops out. Stand at the sink doing dishes, hip pops out. Walk down a step, hip pops out. Breath, hip pops out. Now days I'd probably get a EDS diagnosis, but back then it was a case of take pain meds and hope for the best. Ahhh halcyon days. Basically I spent my teenage years living with dodgy joints and keeping the Bengay, Tiger Balm, Dencor Rub and DeepHeat companies is business. Add in the early anti-inflammatories that stripped your stomach, pain killers and the weird green plant, that tasted like a combination of cut grass and rancid dog turds that my mum forced me to eat, and my teenage years were a blast.
At about 16 Flo finally arrived much to my disappointment. I remember being horrified at her arrival whilst I was at school. Even worse was the fact that the only person available to pick me up was my brother. So I got my period talk from my brother. Mortified doesn't being to describe the feeling of your brother describing a period and handing you a pad the size of the titanic and a tampon, and describing how to use them. Mind you after the embarrassment he sat me on the couch with a can of coke, fish and chips and we watched Christine (1983) and The Warriors (1979) on his cool new video player complete with state of the art remote control connected to the player by a cord. Nothing like watching a killer demon car and NYC gang violence to forget the trauma of your first period.
Within months I was in regular excruciating abdominal pain. After many years of being told it was just period pain and to suck it up, turns out I had endometriosis. Back then there was little to no information available, and few in the way of treatment options. I spent years curled up in a little ball bawling my eyes out thanks to pain. Combine that with the lovely surgeries to fix it, which never worked, and the hormones that made me even more of the bitch from hell, well it was one big pain filled teens and 20's. For anyone starting on that path let me just say demand good pain relief after a laparoscopy. Funnily enough lasering your insides hurts.
Luckily I found a doc who was willing to whip out my lady bits when I was 25 so that pain is over for the most part. I also learnt the joy of the morphine pump during those days. Oh little pump how I loved you. I still remember the doctor being worried that I would no longer feel like a woman once I was wombless, because being is constant pain made me feel like such a womanly sex bomb beforehand. Amazingly I have managed to not feel like a man trapped in a womans body, despite the surgery. Phew! Medical douches! When I think back on that time it always makes me think of the scene from The Life of Brian, with Stan/Loretta, "But he doesn't have a womb".
Obviously my body was so unhappy about breaking up with it's best friend pain that it thought it'd chuck in degenerative discs to liven things up. The pain is pretty much permanent now. It hurts like hell when another of those pesky discs decides to pop out, but other than that it's just white noise pain. I do love sciatic pain though (all just adds to my 80-year-old persona), pain shooting down your arse is so pleasant. Luckily those discs tend to pop out in groups of 2 or 3, and now have moved from my lower back to between my shoulder blades. I think the words shit fight best describe my body at this point.
I still remember the first time they popped, ironically in my advanced pilates class. First there was a pop, then a crunch, then an owwwwwwwwwwwwwwwwww. Even better was that I had to present my doctoral thesis at a conference in another city. I still don't recall what I said thanks to pain meds, but I did get the postgrad prize for research excellence so maybe I should pop more pain pills and my brain would come back.
Now, courtesy of Bob, I add to my collection in the form of migraines, gastro and neuropathic pain, none of which really respond to traditional pain management. I've been told that the migraines will end when Bob is finally under control. Ha! Gastro pain is again some of the Bob joy. The neuropathic pain is due to SNAFU, which has no known cause to treat. I'm pretty sure that at some point in the middle of the night my toes were stuck in a lava bath. There's nothing like feeling like someone is rubbing crushed glass into your toes every second of the day. Fun, fun, fun. I have also made the mistake of using a nail brush on my toes, this is a mistake you only make once when you have neuropathy. I'm pretty sure I could have impressed a sailor with my swearing that day.
Probably my favourite part of the whole pain experience is that the meds best suited to controlling the pain, create a pain that can only be relieved by a prune juice enema delivered by firehose. Medical science at it's best. Those extra special herbaceous brownies are looking pretty good right about now.
Yet despite all this I don't think of myself as living with chronic pain. Obviously I have a screw loose somewhere. I'm pretty sure part of the problem is that when you have multiple health issues you end up focussing on the most pressing issue in the moment and for me that is now Bob related crap. If I sat down and thought about it all I would turn into one of those psychiatric patients who sits in a corner all day long rocking back and forth. Denial is a useful tool at times. As my friend Michele from Dysautonomia Normal says, "Ostrich mode is my very favourite mode to be in".
Luckily to balance all that, I do have patches of numbness. Variety is the spice of lie after all. Though I must admit not realising my arm was stuck on the rose bush was a little disconcerting. Especially when I yanked my 't-shirt' off the bush only to realise later on it was actually my skin and there was blood and a rose thorn sticking out of my arm. But hey, I'm not complaining, there's gotta be a cool party trick in there somewhere and it sure as hell shits on pain.
So really when I look at it, I am the proud owner of the Ford Pinto of bodies. No wonder Mr Grumpy is always saying that he married into the shallow end of the gene pool on that fateful day all those years ago. Personally I blame my parents. Geeze Mum and Dad, you could've put a little more effort into the making. I know I was the last gasp and all but you could've at least put your hip into it, actually maybe that's where they went wrong. Perfunctory sex is bad on so many levels. (Lucky, thanks to my mum's computer phobia and my father's denial, they don't read my blog, not that I haven't said the same to them. Sometimes it's worth the look on their faces).
Okay I'm off, time to celebrate the last day of my immature mid-thirties. Tomorrow I am officially in grown up land of my late-thirties. Here's hoping that the only pain will be attributed to chocolate toxicity and some very nice fermented grape juice.