Living and working with Ehlers Danlos Syndrome/Hypermobility Syndrome

Living and working with a health condition which is variable and generally not visible to the outside world can be a real struggle, and hypermobility is no different to any other.

Becoming a bendie

I have probably been hypermobile since birth, but for various reasons it wasn't picked up until I was training to be a Physiotherapist at the age of 23, when my fellow students noticed that my joints moved rather more than was 'normal'.  One of our lecturers had a look and confirmed that I was probably hypermobile.  I started doing a bit of research and, as is the case with many 'bendies', lots of things started slotting into place.

I constantly sprained my ankles as a child and was clumsy, had often severe 'growing pains' from a young age through to the present day which were never explained, and many other things which could be attributed to this condition.

Learning to pace myself

I didn't actually experience any ill effects of the hypermobility until around 2009, when lots of conditions came together which put my mind and body under immense pressure, and eventually enough was enough - resulting in a month off sick and a very long period of learning the real meaning of pacing myself.  From this point I started to have problems with some of my joints - instability, pain, and resulting fatigue.  This started in my thumbs and gradually moved to my shoulders, then my neck and back and finally my pelvis hips and knees.

Managing my bendiness

Nowadays having been through the NHS system several times, I've learned some ways to manage the condition and look after myself rather than reactively dealing with the symptoms when they get too bad to ignore (which seems to be the way the NHS likes to function).  Like most bendies I have quite a high pain tolerance level, and screen out the normal daily aches and pains without the need for pain relief, but sometimes that's not possible.  Generally I have trouble with my thumbs, which are much more mobile than they should be, and my pelvis.  I have to wear a sacro-iliac belt if I am standing for any period of time to hold the joints of my pelvis together, otherwise they are constantly rubbing which means pain and stiffness for days.  I also have a really helpful motorised desk, and a special chair with a coccyx cutout and supportive back rest, allowing me to work effectively.

Being in business with a condition like Hypermobility brings its own challenges.  Networking is pretty much always done standing up, which on some days is both extremely painful and exhausting.  Walking for long periods can be challenging, so I have to plan my day to ensure I have rest periods if I am at exhibitions or similar events.  Resting is not my forte, so I have to actually make myself stop sometimes, which can mean not attending everything I want to attend.  It also means that sometimes I might use a wheelchair - especially if I am needing to be on my feet for long periods of time - after all, who wants to intentionally cause themselves pain, or not do something, when there is an alternative which means less pain, and having a full and varied life!

The biggest issue I find is accepting the fact that I can't do everything I want and need to do, and being OK with that - but also being able to communciate that to others rather than just put up with standing for hours on end at a networking event and being in pain for the rest of the day.  One way of explaining the challenges of living with a chronic condition which I love is the Spoons Theory by Christine Miserandino .. I spend far too many days out of spoons!

Working with hypermobility

I have always been determined to set up my business to allow people to work from home or from anywhere, just as effectively as if they were in the office.  We have achieved this at Virya Technologies using cloud-based technologies and freely available chat systems (We use Skype and Google+ Hangouts), which means if I am having a bad day I can work from home, as can any of my team.  Access to Work have also been a great help, providing the equipment I needed to work without causing more problems.

Ultimately, there isn't likely to be a cure as it's a genetic condition, however through looking after my joints, losing some weight and pacing myself I'm hoping to be able to manage it as well as I can to continue living a 'normal' life as much as I can!

For more information on Hypermobility please visit the Hypermobility Syndrome Association website.