…to pick up one of the Cheetah Keeper’s trainers.
It was Friday morning last week – we had an extra friend for breakfast and having nailed the 3 children to school, on time, in correct shoes, with correct stuff, the day before I was confident it could be done for a 2nd time.
The Cheetah Keeper was having none of it. He didn’t want to go to school, getting his uniform on was a battle and as for the shoes I had no hope except to get them for him. So I bent over to pick one up – just one little trainer and PING followed by swearing and such words as OUCH followed. My 4th lumbar vertebra disc had decided that being in place was just not on and had slipped out a bit.
I eased (ok, swore) myself back to upright, and staggered, very slowly and apparently looking grey, to school – late. The Cheetah Keeper’s sister was crying because we were late, the Cheetah Keeper was crying because he didn’t want to go to school, and said small friend was running ahead. You can imagine the scene.
I staggered home, took a fistful of drugs, and attempted to do some work before my (thankfully) pre-booked osteopath home visit. She confirmed the slippage of the disc, manipulated it back into place and left me shaking, hobbling and still cursing – with the promise that things would hopefully improve over the next few days/week. I took some more drugs. I kept shaking. I went back to school to play for a rehearsal knowing that if I was going to keel over it was better to do it with people around me rather than on my own at home.
My Ehlers-Danlos Syndrome means that some bit of me hurts most days. Not enough to make me nauseous or pull up on the spot but just enough to think – ooh, that hurts a bit. It can be a knee going downstairs, a finger on the mouse-wheel or my pelvis grinding when I drive around a corner. That’s just ‘normal’ for me. I have the drugs at home to deal with it if I want to, but generally I don’t. To quote one particularly astute consultant “you’re a tough old bird” – he’s right. I don’t feel the need to share this with anyone (unless they hear the joint click out of place and ask what’s just happened) – there’s no point and it would make for a pretty boring conversation.
Just over a month ago I started reducing some of my meds – I’d managed over Easter to reduce my dose from 3 tablets a day down to 2. I’d been through a fair assortment of side effects (lack of concentration, short temperedness, very up and down) but I’d done it and I was in a good place. Annie and I were working on Bake Yummy, BritMums had somehow included me in the Video shortlist for the BiBs and we were doing ok. Our appointment list was reducing, I was managing to get my workload in and I was back playing the piano at school. So, I thought this was the perfect time to reduce the dose again.
Within days my Ehlers-Danlos had started to flare up. By flare up I mean that I was experiencing far more partial dislocations than ‘normal’ (or indeed acceptable in my eyes), my emotions were all over the place, concentration was lousy and I generally found simple things hard to deal with. My joints were painful, especially those that were moving about when they shouldn’t – including my feet, knees, pelvis, jaw and wrists. For other people with EDS this is a day to day occurrence – for me it’s a sign that something is wrong.
It’s suspected that it’s a hormone imbalance – possibly exacerbated by the change in meds or maybe it was just bad luck. The side effects from the drug reduction should last a couple of weeks at most – but in my case they’ve stayed, and to a degree, got worse.
Over the last few days it’s been ‘noted’ (and by that, I mean said to my face by those very close to me) that I’m moany, unappreciative, uncommunicative, lazy and negative. I’ve apparently been making too much of the fact that I’m pain, am being inconsistent in what I can/can’t do and should be appreciating more of what I’ve got and getting on with life.
Drugged up to the eyeballs (tramadol, diazepam and naproxen for those of you who know what they are) and still in pain I’ve found it really difficult to be full of the joys of summer. The grim realisation that I screwed up my work on Friday and Monday in a drug induced haze is not easy to take, nor is the fact that I am not safe to drive. The Ehlers-Danlos makes me shake, the drugs and the movement of the disc make me shake even more. The change in meds has made me up and down – the back injury even more so.
The more I’ve thought about it today the more I seem to have a ‘choice’:
I can either take the drugs – and be able to do more (they take the edge off the pain but it’s still there – I’d need pethidine to be pain free) in terms of everyday tasks, looking after the children etc – but with the side effects of feeling groggy/woozy, nauseous, shaking even more and not being able to concentrate
I can leave the drugs – and be in acute pain which limits my every day activities, makes me nauseous, overrides my ability to concentrate and still leaves me shaking. I would avoid the wooziness but be in far more pain.
The GP kindly explained that the shock of the disc moving is putting my already stressed body under intense strain – so that makes me shake and explains why I’m having problems regulating my temperature, feel sick and generally feel, well, bleugh. Without Ehlers-Danlos a slipped disc is an extremely painful and unpleasant experience – the combination of the two is horrid.
So when you’re in this situation and people ask how you are, what do you answer? Saying “oh fine” is an outright lie. For those who know you better they can generally see by the colour in your cheeks and the look in your eyes whether you’re telling the truth. However, telling any modicum of the truth can be seen as being over-dramatic, moaning or not very British. We’re conditioned to say ‘oh fine’ however much we’re hurting inside.
I don’t want to say ‘oh fine’ because if I’m not. I don’t want to say that work is brilliant because, at the moment, I feel like I’m letting them down and I’m pretty bloody overwhelmed by it all. I’m not delighted with school because there have been some fundamental errors in the health care of the children and that angers me. Being a parent of 2 children with additional needs is not easy – and as much as I am blessed to have some dear friends who point me again and again in the right direction to get the information/help they need, the constant meetings and having to repeat time and time again what is wrong with the children is soul destroying. Yes they have a condition that you’ve never heard of, yes they’ve inherited it from me, no they won’t grow out of it and yes, although they may be working in ‘normal’ parameters that doesn’t mean you should ignore/give up on or dismiss their needs.
I am incredibly proud of how they both manage, how they don’t flinch when it’s time for yet another blood test, how they put so much effort into everything – but underneath, festering are all those questions, the next meetings, the planning ahead…
The recovery time for such an injury is usually about 4-6 weeks – in a ‘normal’ person. People with Ehlers-Danlos are not ‘normal’. Our strange bodies and faulty connective tissue can mean that this period can, on occasion be doubled. With the summer holidays approaching, I struggle to see the positives in that one.
The summer holidays of 2010 were spent mainly at Great Ormond Street Hospital. The summer holidays of 2011 were a frantic attempt by me to make up for all the fun we didn’t have the year before. I drove myself into the ground and ended up on antibiotics! This year I wanted to have a ‘nice’ holiday – no guilt, no dashing from pillar to post; – a bit of mooching, a bit of doing, a bit of fun. Catching up with friends, enjoying the odd lie-in and slowing down the pace of family life a bit. That 4-6 week recovery time slams straight into those ideas – I guess it serves me right for hoping.
Pain affects people in different ways. I’ve been taught strategies in the past of how to manage – there are ways and means you can carry out every day tasks without exacerbating a particular problem/injury. I can apply those and get jobs done. And then I am accused of making up the injury and milking the situation. With Ehlers-Danlos you cannot take to your bed – the muscle loss will make the problem even worse – you have to keep going. Gentle movement, taking it easy but not grinding to a halt.
Hoovering and cleaning the bathroom do not (in my mind) count as gentle movement/taking it easy. They are jobs that can wait. But I don’t believe this makes me lazy – although I’m told it does.
It was suggested today that I should “try and be more positive” as “everyone thinks you moan all the time”.
I find that talking to other people helps me process what’s going on and that bottling it up inside makes it fester like some bacteria ridden pot of houmous in the fridge that will eventually explode. Oh, and I also find it difficult to lie convincingly – those who know me well can see straight through me.
So if I know that I am amongst people who don’t (or don’t want to) understand, I guess I can be uncommunicative. There is no point pouring out your thoughts and worries to someone who does not or cannot cope with having to understand. Equally admitting your fragile mental and physical state is not easy at the best of times – because it is essentially seen, in our culture, as failure.
My body is failing, my mind is failing and therefore my ability to ‘snap out of it’ (to coin a phrase) is somewhat limited. So, I’m sorry if I’m whining, whinging, uncommunicative, negative and not completing tasks to your satisfaction. I’m trying to hold it together for now and being in pain, tired and under pressure to keep things ‘as they should be’ (whatever that is) it’s really bloody hard.