Cheetahs In My Shoes

living with the imaginary menagerie and all that it entails

All I did was bend over…

19 Comments

…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

or

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.

Author: Jenny

Life, photos and recipes mixed with family life, additional medical needs and a whole load of imaginary friends

19 thoughts on “All I did was bend over…

  1. I ‘liked’ this post – not because I am happy that you are in pain but because I’m glad you write it down instead of letting it fester in your mind and bring you further down.
    I moan like a bugger if I get a cold, I have been moaning all day today that I feel ‘a bit hot’ and ‘bunged up’ and have ‘menstrual cramps’ …ok may be a bit toooo much information there.
    The thing I love about you is your eternal stiff upper lip and optimism. You can be feeling crap and in lots of pain and you always ask how people are and get on with life – get to school to pick up the kids and run about after everyone else. You inspire me to be a less selfish person, you really do.
    I wish I knew what to say to make you feel a bit better – or had the skillz to ‘fix’ your back x

  2. It’s so miserable being in pain. And so disappointing when it worsens at a time when you were looking forward to fun. I’m sorry you’re having a setback. You do so much inspite of all your problems – how you soldier on sometimes is beyond me! I do hope you can take it easy a little bit and heal as quickly as possible 🙂

  3. I am sure you will ‘snap out of it’ – but only if you give yourself chance to really recover, and don’t feel guilty about being poorly or moaning about it! Sounds like you have done an amazing job of keeping going, am sure you’d rather have pulled the covers right up. I do hope the ‘holidays’ go well for you, but if all is going downhill (further) please don’t be afraid to shout for help – may be things I could try for you, like childcare, chocolate and wine donations, back rubs (ha)?!! take care x

  4. Sorry to hear you are in so much pain.

    I know exactly where you are coming from as I suffer severe arthritis and I’m drugged up to the eyeballs on Fentanyl Patches, Co-Codamol, Naproxen and Fluoxetine to name but a few of my daily intake of legal drugs.

    Sounds like you do an amazing job with a young family, sorry I don’t know anything about your condition, but to slip a disc on top of a condition that sounds really difficult to live with is a real kicker!

    If you ever need to sound of at someone who understands what it’s like to live in constant pain and won’t get offended then please feel free to contact me.

    Dawn xxx

    • Thank you so much Dawn. I’ve done my time on Fentanyl Patches as nothing else was working. If I have to I can alternate the co-codamol with the tramadol and Naproxen and Fluoxetine are part of my daily handful(s) too. I think it’s harder for many people to understand as it doesn’t ‘show’ and certainly Ehlers Danlos does not present in a consistent way across patients which makes it even harder to explain/deal with. Thank you again Jx

      • It is frustrating when people think your ok because you look ok.

        (((((hugs)))))

      • It’s all about the ‘Glittering Image’ – if you say how you feel you’re considered a moaner and depressing but honest to yourself (and others) – the accepted way forward is to be ‘fine’ all the time – until you break x thank you for the hugs xxxx

  5. Don’t be afraid of ‘whingeing’ – I love the straight-forward honesty of this post!

  6. Sorry to hear you are suffering (more) at the moment, especially after such a positive improvement period. I loved the line about a festering pot of houmous, that is a great analogy for bottling up feelings! Hope things improve soon, at least for the summer hols. X

    • thanks Christine – I suddenly realised that wittering on about houmous was a strange angle to take – but it seemed to explain things rather well. I’ve taken fewer drugs today so hopefully (if no sneaky trainers are waiting out there to remind me what happened before) I will be able to function a little better x

  7. I have heard of EDS before and know there are different ways it affects different people, and it’s a bummer when you make plans for the summer, hopefully, if you pace it right you’ll all be OK & have a nice time. It is upsetting, that sometimes, those that are closest to us can say the things that upset us most. It doesn’t sound to me as though you are being lazy, and may be you are moaning, but it wounds as though you have a reason to moan. Sometimes it makes it worse if we can’t actually say how we feel, so great that you were able to write it here. I hope things improve and you and the children are able to have a nice summer. 🙂

  8. So sorry to see that Jenny. It’s good to get it all out and down and you are always admirably brave. Wish you much better and hope to catch up in the Summer some time XXX

  9. Hope you get some down-time in the summer hols, recharge your batteries. Take care, x.

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