Life

Talking hypermobility.

I’ve talked before about the fact I have Hypermobility Syndrome (HMS), and a bit about how it impacts on my life. In the last week or so I’ve read a couple of blog posts that are entirely brilliant on this subject and so I wanted to share them here.

First up is this excellent post from Disability in Kidlit on Hypermobility and its representation. The author talks eloquently about her HMS, and while her story is not my story there are a significant number of parallels. She also talks about the lack of books that feature Hypermobility, I want to take this opportunity to highlight two books that I’ve read in the last couple of years:

Spotlight on Sunny by Keris Stainton and The Pants Project by Cat Clarke both feature characters with Hypermobility Syndrome. Both books made me cry, because seeing myself on the pages of a book I was reading was important and had been missing for all of my reading life until this point. Representation really, really does matter.

The second post I wanted to share was this one from Hannah Ensor’s Stickman Communications blog. It’s one of the best analogies I’ve seen for what life is like when you have variable pain and fatigue levels. It’s excellent and one I wish everyone in my life would read and understand.

Personal

Moving on from fear.

A bit of advance warning, this one’s going to be a bit on the long side. It’s important to me though so I’m not apologising for this fact.

I made a decision a while ago to stop talking about my Hypermobility Syndrome (HMS from here on in) on this blog, and hid all the posts I’d made about it behind a password. This was a decision made entirely through fear, and one I’ve come to realise was entirely wrong.

Why did I make it? I’ve been applying for full time jobs for quite a while now, and as anyone doing the same knows, you’re bombarded by a constant message that anything you put online may be seen by a prospective employer and influence their decision about you. I thought that having anything on my blog talking about the difficulties I face as a result of my HMS would make any prospective employer reject me before I even got through the door for an interview.

I’ve changed my mind about this now, hence this post. The thing is, whether or not I blog or tweet about being a bendy (one of the adopted terms for anyone with one of the hypermobility syndromes) I still am one. Whether or not I talk about it I will still have days where everything hurts (there are no days where nothing hurts) and will still have days when I have obvious strapping or need to use my stick.

My stick. He’s a thing all of its own. I have a walking stick, his name is Eames*. Here he is:

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I bought him after a trip to Portmeirion showed that sometimes I need a bit of assistance getting round places, and that without that assistance I’m putting myself at risk of injury and forcing the people around me to share the stress of this risk. Since buying him I’ve found he’s really helpful – the instability of my joints means each step I take is a little more effortful than each step a non bendy person takes. Over a day out this is quite a bit of extra effort, if I use the stick then this extra effort is reduced and I can, within reason, keep up (and significantly reduce my risk of falls).

After buying Eames I used him most of the times I should. But not always, and in recent times not at all. This too has been driven by fear – fear of judgement, and in some cases fear that a prospective employer might see and again decide against employing me. See how much this fear has taken a hold? That I would actively not use something that makes my life better for fear it might stop someone employing me?

The penny dropping moment came during my recent fixed term employment in a HR department. As I’ve already mentioned, nothing I do will change the fact I have HMS – it’s a chronic, lifelong condition. I need to work somewhere that will accept I have HMS and will give me the necessary support (though this pretty much amounts to a comfy chair and workstation with things at the right heights – same as everyone would need), the types of employers I’m imagining who wouldn’t employ me because of the condition (and yes I know they can’t outwardly say it’s because of this) wouldn’t support me long term anyway and wouldn’t be the right fit for me.

Fundamentally I know how to manage myself. Regardless of what is hurting on any given day I know my personal work arounds so I can still achieve what I need to achieve. I’m not going to be applying for jobs that would be beyond my physical capabilities (there was a great sounding job I found that specified it involved carrying boxes up and down a spiral staircase so I sensibly didn’t apply) so the truth of the matter is that there’s no reason my HMS should be a barrier to anyone employing me.

I actually think that my HMS has given me skills that I’ll use in the workplace. I’ve become increasingly creative with my problem solving (I’ve had a post about how I bake despite having bendy hands written in draft form form for ages). I’ve also developed my information finding and evaluating skills – there’s a whole heap of help and support out there online but finding it amongst the less helpful stuff is a challenge.

I saw this picture on Hannah Ensor’s blog and it really spoke to me (the fact it suggests I’m a penguin is a happy coincidence)

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No matter how much I try to avoid mentioning I’m a bendy, I am and always will be. I’m stopping wasting time and energy worrying about this – I’ve got far better ways to use both!

* Eames is of course named after the character in Inception. One of my favourite films, and the part played by one of my favourite actors. When choosing a name (I always name things after characters or real life people) I wanted someone stable and supportive, and entirely illogical the patterning made me think of Tom Hardy’s tattoos – something we have no idea whether Eames shared or not!

Personal

Hypermobility Syndrome and me.

In the lead up to this weekend’s 48 Hour Book Challenge I thought I would blog a bit about Hypermobility Syndrome, what it means to me and why I want to support the Hypermobility Syndrome Association through getting people to sponsor me.

I have always been clumsy, I could fall over in an empty room without even moving. I got a real reputation for picking up injuries in the stupidest ways – like damaging the ligaments in my wrist picking up a video cassette, that one took over 6 months to get to a basic level of healing. It was only a few years ago that I got an explanation for this, that it is Joint Hypermobility Syndrome (HMS).

The biggest effect HMS has on me is that it causes pain. Currently it affects my hands, arms, legs and feet. My legs are pretty equally affected, but I’m lucky that so far my left arm and hand are far less affected than my right. Every day is different, there’s little predicting with it – today for instance is a pretty good day and other than my right hand everything feels pretty good.

HMS does have some lesser effects too, it’s the reason I fall over – my joints are less stable than a normal person’s, making them wobbly. Even standing still takes effort, having to concentrate on keeping my hips, knees and ankles all cooperaing together. I also experience partial dislocations from time to time, though these feel weird rather than particularly painful. Finally it causes me fatigue – wobbly joints are less efficient joints making it more tiring to do things.

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The Hypermobility Syndrome Association (HMSA) provides loads of help, support and information. Their website has become my first port of call when I want to know anything, they have answers to pretty much any question. They also have a forum which I have found invaluable – being able to search and find out how other people manage the effects of HMS is incredibly useful, and reassuring.

So this is why I’ve chosen HMSA as my charity to support for the 48 Hour Book Challenge, I know they’ll continue to support me for many years. I’ve already had a few sponsors, and I’m thoroughly grateful to each of them, but of course I’d love a few more so if you would like to help you can sponsor me here. Thank you.

Reading Challenges

Coming Up – The 48 Hour Book Challenge.

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This weekend I am going to be joining in with youth librarians and bloggers worldwide and taking part in the 48 Hour Book Challenge. The rules of the challenge are pretty straightforward:

“The idea is to read and blog for any continuous 48-hour period within the Friday to Monday morning window, starting no sooner then 7:00 a.m. on Friday and ending no later then 7:00 a.m. Monday.”

Originally started by Mother Reader this year’s challenge is being hosted by Ms. Yingling Reads with Abby the Librarian.

I’m really looking forward to this challenge, I’ve being looking at my bookcase that houses my unread books and can’t wait to get stuck in to some of them. I’m a pretty quick reader so I’m hoping to read at least 10 books during my 48 hour stretch. I’ll be blogging my reviews and progress as I go.

There is the option to link the 48 Hour Book Challenge to good causes and I’ve decided to do this. I’m going to be fundraising for the Hypermobility Syndrome Association (HMSA). After years of pain I was finally diagnosed with Joint Hypermobility Syndrome about 3 and a half years ago. It’s a genetic condition that affects the body’s connective tissues, for me it causes weakness and pain in the joints in my arms, legs, hands and feet. HMSA provide support and information about the syndrome. I’ve been helped so much by their services since being diagnosed so I’d love to be able to help them a little too.

If you’d like to sponsor me I would really appreciate it – I’m never going to be able to run marathons or climb mountains, but this is a challenge I can definitely do and hopefully help this charity close to me heart. I’ve set up a fundraising page here – all funds raised go directly to HMSA. Thank you.