Things I’d like my friends and family to know about my hypermobility

This week’s guest post is written by Eleanor, Becky’s cousin and fabulous friend – enjoy! 

There are a lot of posts out there that say ‘I wish people knew this about my health condition’, usually wanting to raise awareness. This isn’t one of those (not that I’m slamming them). I don’t expect you to know this stuff if I’ve not told you. But having recently started composing such a list in my head, I realise my previous explanations haven’t always been helpful, so this is what I’d like you to know.

I have joint hypermobility, or loose joints. This means my tendons are too elastic. Often this means people are very flexible or double jointed. Many ballet dancers, gymnasts, clowns are hypermobile, and benefit from it. However, it can also cause pain and stiffness in joints and muscles, clicking joints, joints that dislocate or partially dislocate easily, fatigue, recurrent injuries, digestive problems. Oh hi, *waves* I’m Eleanor.  The first doctor who identified it told me and my mum that it’s very common in teenagers, (I was 17) often caused by growing too fast (we know about that in our family, don’t we Bex?) [Editor’s note: both Becky and El were 5’9”+ aged 14…] and my joints should have stiffened up naturally by my mid-twenties. I’ll be 25 next week. Hmph.

‘But El,’ I hear you thinking. ‘You’re ridiculously inflexible. You’re always moaning that you’re feeling stiff and dragging your feet along the floor, and then moaning that your shoes get scuffed toes. You can barely even touch your toes with your feet flat on the floor. How can you be hypermobile?’ Well observed, most astute reader!

According to the physiotherapist I also unconsciously (and increasingly involuntarily) tense my muscles a lot, because of the hypermobility. Mostly to just try and hold things in the correct place – total muscle relaxation now puts quite a lot of strain on my joints if not properly supported, as they will just relax a bit too far out of the joint – which is uncomfortable  to say the least. The result of this is that my muscles are pretty strong, but also very tight, hence the inflexibility. So habitual is this tension that muscle relaxation is not something I can always achieve on command (to the frustration of my very lovely osteopath). As some muscles groups (like my arms) are tensed a lot, other muscle groups have to do the work (like my hands) and so are easily exhausted, as they’re always over working. Sometimes to sleep I need extra supports under my elbows, neck or back to let the muscles relax enough for me to nod off. Hence getting out of bed I always sounds like a a piksie dancing on a typewriter as each one of my joints pops properly back in place. Inactivity, injury, unusual stress, overexertion, stretching or straining can cause involuntary tension, muscle spasms, cramp.

el2

TL;DR? Struggling to get your head round how that works? Fear not! I have a glorious analogy for your enlightenment! You know those wooden mannequins artists use to draw people? The really good ones can be pushed into any position the human body is capable of, but none that it can’t. I’m like one of those where the elastic has gone, and suddenly, all the joints just go a little bit further. Not totally falling apart, but the joints won’t quite stay in place either, so if you’re putting it in any mildy radical position, you’re constantly pushing the joints back in properly as they slip. Exercise winds up the bad elastic, and stops the joints going every which way at the slightest touch, but the moment you stop winding, it runs slack. And my muscles are as stiff and unhelpful as that little wooden dolls, so ouchy tightness and inflexibility. Yeah. That. That help at all?

Having said all that -my hypermobility is relatively mild. I have friends with Ehlos-Danlos who have it much worse than me. Their joints are literally disintegrating and they often can’t walk without the help of crutches. I am forever grateful that I don’t experience the pain and discomfort that they do. Most of the time, you won’t notice I have it. Exercise makes it better, but not too much exercise, or I hurt/break myself. But not doing any exercise is probably one of the worst things I can do. However, sometimes exercise just seems to break me inexplicably. Just can’t win sometimes. Often the warmth makes muscles and joints looser and less painful (or just makes my fingers swell, you know, depending) and the cold means I can feel every joint acutely and my fingers feel swollen and stiff.

So, stuff I want you to know:

  • I know many of you are grossed out by the sound of joints clicking. I get that. I’m sorry. Try and remember that most of the time, I really can’t help it, I probably don’t even notice it anymore, but if I’m doing it deliberately, it’s to relieve significant pain or discomfort.
  • I am usually in some kind of pain. Don’t worry about this, most of the time I don’t notice anymore and I only realise that I was in pain when experiencing pain relief. But if I get overexcited about washing up or a bath, it’s because I am contemplating a few gloriously pain-free moments, where I’ll feel as invincible as Iron Man.
  • If I am moaning, feel free to tell me to shut up and get on with it. We all need to hear that sometimes, and I’m no exception. But if I am just sad or tired, hugs are better.
  • The most obvious thing you’ll notice is that when getting out of a chair/off the floor I move like someone four times my age. I’m not clumsy or arthritic (yet) or even dramatic -I just only need to be sitting down for 20 minutes to be as stiff as a plank of wood from neck to toe, which hurts. And planks of wood are not graceful. The longer I’m sitting, the stiffer I am, the more things hurt. Bear with my slow creakiness, and try not to make a witty comment about alcohol if I stumble or lose my balance. Do however, feel free to laugh if it was funny. It’s often hilarious if I fail to get out the chair first time, or struggle to maintain my balance once standing, and I’ll be giggling.
  • Because of inactivity fast causing stiffness and pain, I tend to wriggle a lot in my seat. Please excuse me. You should probably know that if you invite me somewhere where constant wriggling is socially unacceptable, like a wedding or a conference, it’s quite a big thing. I’ll come, enjoy it immensely, and I’ll be good and not wriggle but I might get a bit quiet towards the end of the day as the pain overtakes me a bit. If this is obviously happening, please send me home early, with chocolate.
  • Sometimes, ‘cause of hip, knee or ankle rebellion against the mothership, I’ll walk quite slowly. Match the pace, don’t bat an eyelid, and I’ll love you forever!
  • I discovered I was hypermobile through issues with my hands. They are ok when warm and not doing too much repetitive activity. But if it’s winter, or I’m typing lots, they will be stiff, painful, and the involuntary tension in my arms and neck will go haywire. That’s why I live in fingerless gloves October through to April, (I know you always wondered) and type with the help of those floaty clamp things you’re all jealous of. So if it’s cold, and I look like I’m struggling to hold a phone, use a kitchen utensil, type a text, open packaging, pick up crockery, open a door, a bottle, or jar, turn a page, or use cutlery – *breathe* – offer to help if you can, or just bear with me. Tell me no one cares if I eat with my fingers, and bring me a mug of something hot to cradle in my claws.
  • I know that these aren’t perhaps the most logical links to process, but for me, injury = stopping exercising for more than 48h = bad pain episode = extreme fatigue. Whatever I’ve done to myself that stops me exercising may seem very local, or minor, or downright invisible and not something you’d expect to be debilitating. But the ramifications are huge. And the pain wipes me out. Please be patient with me as my capacity drops, I get behind on a few things, I zone out of conversations, ask you to repeat yourself again, and sit there yawning and blinking when I got twice as much sleep as you did last night. I’m sorry if it seems insensitive when you’re dog-tired from sickness or teething toddlers. I’m interested. I care. You’re not boring. I hate it, and I’ll be trying to get out of it as fast as I can.
  • The fitter I am the better I’ll cope with periods of non-exercise, and the less affected I’ll be. So if you invite me to a film after I’ve been sitting behind a desk all week, don’t be surprised if I pop a couple of painkillers with my popcorn. On the other hand, if I’ve been cycling or walking a lot, try not to die of shock if I bounce around or just seem much more… fluid than normal.
  • There is a lot I can do, but high impact or repetitive activities are hard and/or bad decisions. I probably won’t ever be able to knit, or run a marathon. I probably can’t play the piano or rock climb anymore. But don’t say my no’s for me. Ask – I’ll think about whether it’s feasible/wise, and get back to you. I am determined that I shall one day hill walk again!
  • I don’t need wrapping in cotton wool. The majority of the time – thanks be to God – I’m fine, and I cope. I can lift the heavy box, run for the bus, ride a bike, use a fountain pen, open a tupperware, play the sport, hold a phone, eat my dinner competently with cutlery (as much as I’ve ever been able to). But sometimes I can’t. And I will tell you, and not do those things, or let you know if I’m unsure and going to find it hard. But mostly -just let me get on with doing the thing.
  • Don’t offer me cake. I love cake. I think your cake looks scrumptious and beautiful, I could never have made it because I’m a terrible baker, and I’m so impressed. I really want some. But the best thing I can do for my joints is to lose as much weight as is healthily possible. (I know I don’t look that overweight, but I am.) It will make a difference. I’ve struggled with weight management since starting university. And it’s caused me injuries. So ask me if I’m allowed a treat today before offering me the cake. Hopefully, I’ll be able to say yes to both!

I don’t expect you to remember this. I’m still figuring it out myself. So ask if you want to know, don’t bother if you don’t care, and please just bear with me. ‘Cause I care when it affects you.

 

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