Hypermobility Syndrome

When Ram was younger he used to hate shopping and as soon as we got into a shop he would lay down on the floor. I always thought it was to do with the autistic side of things, but eventually we realised that there was more to it than that. When he was nine we consulted with a physiotherapist and found out that Ram had hypermobility syndrome which is a condition where the joints are more lax, causing pain and fatigue.

That is when we started using a buggy which turned out to be a life saver is so many ways. Many health professionals don't like children in wheelchairs or buggies as to them it 'makes' them disabled, but our experience was far from that. It gave us a new freedom as it meant that we could go further and faster, knowing that at any time Ram could rest comfortably. It also addressed his autistic side as it meant with the sun shade down no one would talk to him!

However, once puberty hit his hypermobility became worse, something that we had heard about. As the tendons in the joints are weaker than normal, the muscles have to work harder to keep things in place, which can lead to tiredness, especially after a day of activity. The idea is that people should pace themselves, but try telling that to a boy!

Basically, Ram's feet don't just hurt when he is walking but even just standing cleaning his teeth. Various joints feel like they will sublux if he is not careful, and any amount of activity will have him exhausted for a few days afterwards. This means that we have to space activities, so if the Dxh comes on Saturday, we have to keep Sunday and preferably Monday too clear to rest. And two days are needed after a home ed robotics meeting, even though now that they are teens they spend most of the time 'loitering without tent'. You know, the opposite of loitering with intent.

We had got used to this, and took it all in our stride. He does have exercises which are very hard to get him to do because of his oppositional side, but we were coping. However, in the last six months it had got a lot worse. He was feeling dizzy not just when standing up quickly, but when laughing, something we do a lot around here. He was also showing extreme fatigue. Some days hardly being able to walk. In fact after one robotics outing to the regional heats of The Big Bang Fair when he got home he had to crawl from the sofa to the kitchen to eat dinner!

So we finally bit the bullet and went to see the GP. First time in 10 years! But I will save that story for tomorrow.