Awareness comes in many forms. In the case of a rare genetic condition, this can be both positive & negative. Surely, I can hear you say, there’s no such thing as bad publicity. But when it comes to a diagnosis, there can be.
May is Ehlers Danlos Syndrome awareness month & as part of that, here’s my two penneth to add to some already outstanding posts. (Be warned, this is more the ramblings of an insomniac waiting for the next pain relief window!). It’s taken me a few nights to write this as there’s an awful lot to get through!
Along with a number of other people, I’ve come up against that Rheumatologist who decides that he knows better than the specialist consultants. That one (generally older) doctor who sits back in their chair and regales you with tales of how certain diagnoses are “in fashion” and a private consultation will of course result in a diagnosis because you paid them. They make you doubt your own diagnosis even though you know your body best & they met you 10 minutes ago. At best, these doctors are breaking the hippocratic oath by following their own agenda instead of doing no harm, at worst they’re downright dangerous.
Even in support circles for EDS, there is a disturbing undercurrent of symptom competition – I’m much sicker than you, so you can’t complain. In doing this we don’t help ourselves. Support online is about being there for anyone on this unpleasant spectrum. And understand that we all have our personal pain scales – a 10 for me may be a 7 for you, or conversely, you may be unconscious by my 7.
My own experience of EDS differs from other people’s as we all experience symptoms on a spectrum. I have a diagnosis of EDS type 3 with classical (type 1) crossover because of my weird skin.
My main daily issues are that my limbs refuse to stay attached to me. EDS itself is not degenerative. However, it appears so as each new dislocation or injury leaves more scar tissue, or joint damage, creating pain & disability. No one entirely understands us, and there is an awful lot of stories of our conditions taking a sudden nose dive after an illness or accident (mine included). During a flying visit from Mrs Gypsytree this weekend, my daft Sherlock said how she remembers coming over for her final goodbye evening whilst I was suffering with viral bronchitis (and coughing ribs out of place). It was shortly after she left for Ireland that I went waaay downhill & she’d wondered if she’d just left me to rest if all this wouldn’t have happened. Oh Sherlock, you don’t control my collagen or genetics. Although it is your fault that I have to argue with Easyjet on a termly basis to come and visit. Because even sticking me in a chair then moving 600 miles away doesn’t let you off the best friend hook.
Having been undiagnosed for over a decade since real chronic pain set in, I caused permanent nerve damage in my pelvis & back through following physio for “normal” people after 2 prolapsed discs, several more bulging discs at multiple levels, & dislocating my pelvis. I pushed through the pain not realising that actually I was making everything worse. Fast forward to now with me as a full time wheelchair user & my pelvis and hip sublux daily, my knees twist and both patella move freely, my ankles turn in and that’s just my lower half! Pain is a thing that just is. Stuff pops out. We put stuff back on. If we didn’t, I’d live in A&E. Why cause more X-rays when we can fix me like Lego?
It’s not just the bottom half. Most of the time I use a powerchair, but I’m keen on using my lightweight manual around the house & at weekends to build up the strength in my arms. Just by doing this small amount of exercise means that my shoulders may stay where they belong more often! The flip side of propelling is shifting ribs – this morning was a good example of this. Eating breakfast, I realised I couldn’t breathe because of a horrible sharp pain in my sternum. Placing my hand on the outside of my ribcage & pushing, I felt (and heard) a clunk as the rib popped back in. Grim eh?
Ah the shoulder knots. The hours that Mr Geek has spent digging his thumbs into those stubborn knots that just won’t bugger off… muscle knots do have a special name that slips my mind right now (edit: trigger points). But they are tiny bits of muscle that were tense then forgot to stop being tense and cling onto a bit of lactic acid and become a hard lump. When squeezed, my shoulders feel like they have rice in the muscles and like any muscle that are constantly tense, it aches & causes tension headaches. Again, exercise helps, over-exercise hinders. I’ve not found that fine line yet.
A perfect example being today. It’s Saturday, the sun is shining, the tank is clean… I woke up knowing we’d planned to take the bikes down along the prom and cycle to the local pool. So double whammy of sunshine and floaty floaty pain relief. I managed the whole thing on minimal pain relief (and a lie in & nap in the morning), then we got home and after dinner BAM! I’m freezing cold & exhausted & my legs feel like I’d actually cycled instead of using Leonardo (my super awesome wheelchair electric bike). I messed up my pacing today, but it was utterly worth it. Check out that wonderful blue sky!
A nod to my tiny babies in the gif above. We had no idea why my pregnancies were fraught with issues, from SPD to full dislocation, to my waters breaking at 35 weeks, then TinyPants at 32 weeks to the day. You’d think with an extra stretchy body, labour would be easy, but oooh no. 52 hours of making farmyard noises, then an emergency c-section because her massive head was stuck in my wonky pelvis! Then healing from a c-section. Which isn’t meant to go ‘stand up after 6 hours & stitches rip through you like cheesewire’. Also, ow.
It’s all forgotten now though…. ish.
Oh yeah, and that epidural I screamed for? Didn’t entirely work. I take an awful lot of painkillers these days, & I’m remarkably coherent for someone who maintains sanity with morphine. This was illustrated when an ovarian cyst ruptured one of my ovaries. The surgeon conversation went a bit like this:
Doc: But we’ve given you morphine, you shouldn’t be able to feel that.
Me: but I bloody well can! Are you sure that wasn’t just water?
Doc: No, you clearly can feel that. Weird…
Me: go away until you’re qualified Dougie
Doc: could someone call an anaesthetist?
I feel bad now for being mean, but at the time I was having my rapidly dissolving ovary poked with some force. Of course they thought it was my appendix at the time, but we’re baffled that it took enough sedatives to chill out a sumo wrestler for me to stop squealing.
As a general rule, I do try to be a nice person. But like anyone, I have a pain limit. Or rather I have particular pains that drive me more crazy than others. The one that is guaranteed to turn me into a howling banshee is TMJ pain. It’s the jaw joint & muscle. Sometimes it pops out, other times I clench my teeth without realising and the joint pain feels like the worst wisdom teeth pain. It makes all of my molars hurt & causes immense headaches that just sit around my temples and make me with PMT look like Julie Andrews.
It helps to try mindfulness and focus on relaxing the jaw and allowing the muscles to stop being is spasm. The flip side of this is looking less intellectual than Donald Trump.
It’s not just the jaw that takes a battering. But the teeth & tongue. My teeth have always been crowded at the bottom, and they move on a monthly basis, but I’ve learnt to smile in ways that hide them.
My tongue is particularly hypermobile (I know fnar fnar), but actually what this means is I can touch my nose with my own tongue (known as the Gorlins sign), but also lose control of it regularly and bite it. I have to think when I chew, not talk!
My sleep patterns suck. I’m in bed early evening without fail, but blog and read and Facebook and tweet as vwhilst my body is shot, my brain is having a party!
Who knows where these weird sleeping patterns come from, but it’s possible that other linked issues such as POTS or general dysautonomia play a part here.
The bags under my eyes play witness to the fact that I’m unrested!
And after all that self indulgent whinging about how much EDS sucks, you know what? It’s not all that bad. Most (not all, but remember this is a spectrum), with the right support from a knowledgeable team, and ongoing support from Occupational Therapy and Physiotherapists can live an adjusted but still fun life. Mobility & living aids are just that, they help make life easier and there’s no shame in using them if and when they help. Leonardo (the wheelchair cycle) may be great for getting me out into the open, but he’s also improved my state of mind tenfold.
I can’t praise my OTs enough. Out of everyone, they’ve looked for solutions & told me that they’d kick my arse if I thought about giving up. We’ve both agreed that my pain levels sky rocket whilst I’m working & level out during the holidays. We’ve also agreed to say bollocks to it and do everything in our power to keep me working. If only for Mr Geek’s sanity. If I was at home, I would drive him up the wall!
They think of him too. After all, he’s the one who gets me up, helps me dress, gets the kids ready, cooks us food, and holds down a senior code genius job at the same time. This week my lovely OT ran through the standard checks with him that he’s ok & are we sure we don’t want a carer. I remain in awe of Jo Southall, a fellow EDSer and trainee OT. Talk about using what you know!
So there it is. A few snippets of my own experience of EDS. Life isn’t over when your joints say it is. There are ways to reduce the degree to which you are disabled, not by changing your body, but by adapting your environment and taking care of your head as well as the strange stretchy housing that your head lives in.
So from me. If you know someone with EDS, give them a gentle hug from me😉