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.
Michelle, I didn't know that Bob wasn't your only health problem. I'm sorry to hear that. Problems throughout life are so traumatic, eh? The trauma seems to stick years later, especially when you have a variety of conditions that don't seem to be linked, so it can be easy to think, "Why me?" or "What next?" Do you agree?ReplyDelete
My mom has degenerative disc disease and it affects her in myriad ways. Do you find it hard to tell what pain is affected by which condition, or is there some overlap? Are your doctors, friends and family sympathetic to your pain? Do they try to help you get through it?
I live with pain too, but not severe and not constant. I know what you mean about the pain seeming insignificant compared to everything else. Sometimes I feel the other symptoms distract me from the pain. Does that ever happen for you?
Loveable - I'm more a "what next" kinda girl as there always seems to be something new and exciting on the horizon. Sorry to hear about your mum. Yeah it's hard some days to work out what is due to what especially as when you have ANS involvement there aren't many symptoms that can't be attributed to it. The families okay about the pain thing, they know how bad it gets so for the most part they try to be understanding. I think I concentrate on the most pressing issue. It'd be too overwhelming to try and deal with them all at once. For example, if I'm super dizzy then staying upright is priority,not to say other stuff isn't going on at the same time. Pain does make the other Bob symptoms worse.ReplyDelete
another denialist. i love that place, its how i cope. you do sound as if eds is a friend of yours too, pesky blighter. can you find a dr that could diagnose? not that much can be done, although physio could help.ReplyDelete
i get confused much of the time, i get up to do something then when im gasping for breath realise that ive been walking around for two minutes and realise i have a little known condition called pots!!! im sure my brain is getting worse.
oh and i too can blame the parents, because i can, because its true, its there fault. i try not to say this out loud too often in a jokey manner because they take it hard and arent best pleased. xxx
I know I shouldn't be laughing but I am, I am so sorry.ReplyDelete
Bizarrely having the EDS diagnosis doesn't make much difference I don't think. Bet you agree with that em?
I know I have POT's but my list of EDS related shit is frankly enough and any appointment with a consultant of any note renders me an inarticulate wreck. My gp - ignores my raging palpitations, fluctuating blood pressure etc etc... oh yes I get beta blockers and all their side effects. I expect if I pushed I could see loads more specialists, I prefer to live in my bubble land.
If I could have a morphine pump I would. I don't overly care about all that tolerance stuff. It is the least side effects med apart from the prune juice side of things.
I wonder how many of us were told we had something as children which was actually the EDS? I remember them telling my mother I had ricket's ........ try telling a Headteacher that their daughter who lived on organic chicken's and their eggs plus organic fruit and veg from our extensive garden that!!! Then to add insult to injury when she and my father babysat the kid's when we first went to get my EDS diagnosis - oh my god - their gene's no no no... I am a mutant.
I think living with chronic pain involves a great deal of denial. Its the only way and I can tell by your very well developed sense of humour just how shit living with chronic pain and POTS is for you. I think it takes one to know one (although your literary skills far surpass mine).
I have sworn twice I am sorry I can't help it today. I just keep swearing.
Oh does this mean its your birthday. If it does Happy very Happy Birthday.
In my teens I was that short skinny girl that was always ill with something. It affected my friend circle greatly and boy's weren't allowed until late teens as I went to a single sex convent. I found them aged 16 and the rest is a whole new story.
I started my period's aged 10! At a birthday party in a swimming pool - oh my god Fortunately i was told what was happening by a lovely mum as mind just handed me a box of tampax and told me to keep them in the bedroom as my father didn't like to see them in the bathroom. Try being ten years old and trying to work out what to do with a tampon from the instructions!
Your brain is the funniest most eloquent brain I have come across in a long time by the way.
I mentioned EDS and symptoms in passing at a family lunch last week with parents and the subject was quickly changed. No suprise there then!
Its a good job we can all tell it how it is in virtual land - to help keep things real. I often wonder if I would cope less well without you.
I've had the pleasure of reviewing "Living with Bob (Dysautonomia)" and I'm pleased to inform you that your blog has been added to Blogging Women.ReplyDelete
Thank you for sharing your blog with me and now the many readers of our blog directory.
Keep up the great work and I'm looking forward to your future post.
Ah, the great pain monster! Unfortunately, this is actually my most distressing symptom. I do have some (ok, quite a few) problems with presyncope, and tachycardia, but I'm at a minimum of a 5 on the pain scale at any given time. I wouldn't wish this chronic pain on ANYONE!!! There isn't much in the way of pain management that can help, at least that won't do too much damage in other ways down the road. Thank you very much, but I happen to be attached to my kidneys and liver, so constant usage of opiates is not an option for me (at least at this pain level... it would have to get much, much worse for me to even consider it). Besides, I'm stupid enough with the brain fog, I don't need any further help.ReplyDelete
I'm like you, Michelle, in that I have to focus on the most pressing issue, because dammit, it's all a might overwhelming, eh? Even just the most pressing issue by itself is very daunting to deal with at times. Denial and self-destruction aren't probably the healthiest ways of dealing with it... but it's getting the job done, for now at least.
Em - Denial is a pretty cool place. I enjoy visiting there and often stay for an extended visit. Parents are always to blame, dam them and their dodgy genes.ReplyDelete
Achelois - Laugh away. I often do. Some times it's kinda funny haha kind of laughing, other times it verges more on the hysterical side. Glad you can appreciate my humour. i think it's a little dark for some people, but it seems I missed the memo on how to write a health blog with the appropriate tone. I think if you live long enough with crap health (and yes that swear was for you :)) you have to laugh or you'd be crying into your weeties each day. Not to say I still don't do it on occasion, but for the most part I go with hysterical insanity.
10? OMG 10! wow at least your mum came to the party. Yep it was my birthday on Tues another year down, living the dream and all that. Did manage to eat large amounts of chocolate cake, gluten free and yet delicious. Swear away I find it kinda cathartic at times. And yes I want to hear the post convent stories LOL.
Fay - thanks for adding me to the directory and thanks for following. The directory is a great idea, I love the fact that women are supporting women.ReplyDelete
Ericka - it's pretty grim when you have to scale your symptoms to what is most pressing. I'd love to go back to the time when my worst problem was a cold once a year, ugh. Sometimes you have to go with what works to get you through the day. The whole meds thing is hard. I'm yet to find one that doesn't have side effects that are almost/or sometimes are worse than the symptoms they are supposed to treat.
I hear you with the meds! Right now, I am not taking anything, since the beta blocker I was on was causing worse problems than it was treating. Ok, so I wasn't having AS many chest pains (although it was still a daily occurrence even on the meds), but I'll take that over complete and total exhaustion (like, I nearly fell asleep in class all of the time, instead of half of the time like normal) any day.ReplyDelete
While I'm not functioning perfectly (and we've had near 90 F days here, I guess around 30 C), I've been managing somewhat. And I hear you about the side effects, too! I'm getting ready to write another post about my "musical meds" from when I was a teenager. I was on nearly every single psychotropic med there is... The psychiatrist who dx'ed me with bipolar I isn't an autonomic disease specialist... Thank God that I finally wizened up and consulted Google!
So glad you share your story. You really do help so many people. I also have white noised the the pain. I think it being a constant dull pain in my joints made it eventually just be the way I felt. Now I have sharper areas of bone pain. Hoping it isn't some kind of fusing issue. :(ReplyDelete
It just becomes the norm after a while, amazing what you can get used to. I get sharp bone pain in my left leg and right hip, hurts like hell, but all the scans came back okay and they just decided it was more neuropathic pain, YAY. Now if they could find a drug that actually touches that pain I'd be pretty happy. xxDelete