Living with Hypermobility and Deficient Posture Syndromes

I have often written about how to cope with these things and how to take effective action to reduce pain and improve your body’s efficiency. 

I have never written about what it’s like to actually live with these monsters on your shoulder day in day out. Having the pressures of modern life – traffic, work, noise you can’t control, love quarrels, family discussions, sex cravings, differences at work – when all along you know a drop might tilt your glass and take away your ability to very literally take the next step. Walking step I mean.

I work with maths. It has the power to take my brain away from any pain. I dealt with my Father’s one month agony until his passing by throwing myself into maths wholeheartedly, 12 hours a day, which was all the waking time outside his visiting hours.

I do maths for a living now. It’s like having a big lego box to play with. And I do it well. So I often have people around me asking for direction, needing me to give them reassurance and spoon-feed them the next step. My work involves a lot of pressure. And a lot of travel. And I mostly like that.

But with these annoying syndromes, it means my brain requires more “space” than others to coordinate my muscles. And sometimes it goes into over-run when too many things pile up and it has not had time to recuperate. And it just gets overwhelmed. So overwhelmed it switches off my ability to walk. Or gives me extreme dizziness. And all I can do is lie down and hope it will pass. Anytime anywhere. And sometimes with a good rest it all goes away. And sometimes a little meditation is all that’s needed. Sometimes not. Sometimes there is some obstacle in my posture that makes the noise not go away. I have had a full month of dizziness and another of headache with no idea what to do to stop it. Then I have to control my fear and think through the causes that might be making the obstacle. It is often something in myjaw alignment  but sometimes it is some tight muscle for example. Then I need to find someone to help – a dentist, an osteopath, a massage therapist, normally the first. While all this is happening, there are still 15 people at my door asking for this and that. My nephew is still over-eating. My mother is still needing help with this and that. And I must just retreat. I have no other choice. And my boss gets upset. And I have to sit and watch this from my bed and just apologise and feel like shit. And if all this happens during the many months I live alone in London, then I’ll have to go through all that without even a person to bring me a cup of tea. And that’s so scary.

I have been known to be driving and not manage to walk when I get out of the car. To have some strong jaw or back click and just feel my muscle control switch off entirely. It happens because the click changes the relative position of my body and all of a sudden the brain has no idea where anything went and just goes “fuck this” and switches me off. And I never know when it’s going to happen. And as I travel the world doing my presentations that I do and going from airport to airport, I know this might happen any moment. And I have to manage the fear that it brings. Cos I don’t want this thing to dictate my life! More than it does! Cos I want to cycle and climb mountains and do healthy strong things too! And it feels alive and liberating when I do.

Lately I haven’t been managing to cope. I can’t quite manage the fear. I feel anxiety and panic over nothing. Shortness of breath. This started since I found out I needed an operation for something unrelated (?). My brain being more wired up than usual as regards the condition of my body (due to my syndromes) felt the invasion of the cut even if my consciousness registered no pain. Being told the option was between cut and risk of cancer also added to the feeling that I have no control. As no one does. But the illusion of control was what kept time going all my life. Hence the maths.

And so now I find myself entering panic states over nothing. Feeling my throat compress and shortness of breath, inability to sleep. I can still control it by saying “Ana, it’s just fear, it’s not real”, but the shortness of breath stays. I don’t know how to get myself back. And all along still 15 people outside my door ask for help with maths and think it’s all very very important. And my brain would much rather listen to them than face the fear of void. And has me ploughing along despite all the spites. And that doesn’t work.

And on top of it all, every so often I have to deal with someone thinking I’m weak, or vulnerable, or some physical therapist thinking they know so much more about this than I do, when they know so little. What they do not realise is that I have been dealing with sides of this for 15 years! Do you know how strong I’ve had to be to reach where I’ve reached with this Aquiles heal?! I’m just tired. Been doing it alone far too long.

Now that I’ve said all that, and aligning all this left to right has helped, I will go do some micro-cosmic orbit meditation and hope for the best.