5 awkward hypermobile situations- Part 3

So part 3 of this series focuses a bit on things that other people do that cause stress. And stress in general. I've had number 5 and 4 happen to me recently, so here is my rant for the week:

1) Trouble eating? Jaw dislocation and pain in hypermobility is not uncommon. Sitting at work or having lunch with friends or even eating dinner at home on the sofa- there is no ideal situation to have something violently click in your mouth and the food to fall out. Sadly yes, this does come from experience. Who doesn't love half-eaten digestive biscuit in their lap in a busy office?

2) Bags. Now, a lot can be said for deciding to use a small, lightweight, sensible bag. Good for your back, easier to carry, less chance of injury. However it isn't always possible and girls in paticular LOVE their large bags. I'm thinking a lot about suitcases here. I have had some true nightmares with them. Dragging for more than 1 minute causes bad shoulder pain, picking them up causes bad shoulder pain, forcing them shut causes, (yep you guessed it) bad shoulder pain. Relying on the kindness of strangers or your friends to lug your bag down the stairs at a train station becomes a key part of travelling. That or just taking no clothes away with you and hoping for the best.

3) Lifts. The hypermobile community and stairs are not the greatest of friends. Having ankle, knee and hip issues means stairs are a big problem in some cases, particularly massive flights of them. So you opting to use the lift makes sense, and you might when planning ahead think this will be fine. However, where is the lift? Why is a ten minute walk away? Why is it out service? I have to really let the people with buggies go before me don't I? It's surprising how hostile people with 'life entitlement' can get.

4) 'Would you like a photo madam?'  Limping, using crutches, being in a wheelchair, having to receive help. Anyone who has ever used an aid in public without a cast to explain things, or needed to use a wheelchair will probably have dealt with their share of staring strangers. It becomes it increasingly difficult when you're already frustrated to not vent your anger at people who gawk at you. Maybe we should carry around Polaroid cameras for people to have pictures?

5) Show us a trick then? Explaining your condition to someone and taking time to educate them to be asked 'ohh! Can I see a party trick?' is enough to set even the most patient person off. Not taking a frankly aggressive tone when you explain that NO you won't start bending your joints and causing yourself pain and possible dislocations just to show off, can be quite the feat.

This blog now has it;'s own Twitter feed! I wanted to make a profile for it where I can concentrate more on sharing relevant stuff. You can connect with me @ChronicHealth1 for the blog and for further hypermobile musings and lots of talk about food @laurenrellis

Join forces for Rare Disease Day 2015

Rare Disease Day takes place every year on the last day of February. The idea behind the day itself is to raise awareness, both among the general public and decision makers. This is a day for people affected by rare disease to have a voice and make a splash. People are encouraged to come up with events and take part all over the wide, meaning often patients who would never normally connect with each other have an opportunity to.

This is a perfect chance to to do something, no matter how small, to support those who are impacted by rare disease, patients, families, friends, anyone and everyone. Since being launched in 2008 by EURORDIS, many events have been set up and ultimately a great deal of coverage which is often hard to come by, has been picked up and spread by the media.

If you are interested in learning more, finding out about events, or supporting the day yourself, visit the website.  You can also connect on Twitter- @rarediseaseday and on Google+ +rarediseaseday . 

My last post dedicated to RDD was about Annabelle, a young lady who has a rare type of Ehlers Danlos syndrome. This year I wil be following up with an update about Annabelle and the charity her family have set up, so look out for that.

Remember if you personally are impacted by a rare disease, want to raise awareness or stand up for someone you know, February 28th is a great chance to do it.