#MarfanMonday
Marfan Monday
I don’t know about you but August has been a busy month for me and September is set to be the same! This week in particular is jam packed for me, with a few hospital appointments and I’m heading down south to stay with family on Friday to attend some appointments in London.
Today though, my busy week kicked off with a powerchair demo at home! I’ve needed a new powerchair for a while and today I tried out one that might just be perfect for me. I’m excited to get something that will allow me to have a lot more freedom, my current chair has served me well but it’s just too basic now. With Autumn and Winter coming up I know it’s going to be more important than ever that I have a powerchiar that is comfortable and fits me well, as like many other’s, my pain is worse in the colder months. I’m preparing though! I’ve got my electric hot water bottle, electric blanket and heat pads ready for the cold weather.
What have you been up to this Summer?
– Shona (HMSA Marfan Ambassador)
Blog post by Lara Compton on Pain Management
I have hEDS, and despite having gained my diagnosis in 1999, it’s taken me a long time to get a grip on pain management, and I’ll be honest, I still don’t always get it right… But, part of effective pain management for me, has been to ensure I’m kinder to myself in all ways, particularly if I don’t make the correct decision at times!
So, how do I manage my pain? Of course there are some pain killers in there, but they’ve never really worked too well, and I get awful side effects.
Heat and ice work well, and you gradually learn along the way which is needed at what time.
Taping can help loads – but I learnt the hard way that your body can become over-reliant on it. So now I try to only tape for part of a day, partly to give my skin a break too. If a joint hasn’t started to become more stable within a week or so, I’d start to rethink the tape.
I have specialist massages with a lady who has lots of experience with hypermobility (although we still laugh about the first time she massaged me, and my shoulder subluxed afterwards!) This is one of the biggest pain relievers for me.
Lastly… We move on to the biggest element of pain management in hEDS. Pacing. I’m still not a pacing expert (hence the incorrect decisions at times!) but now I’m finally pacing myself properly, I am so much happier. I am enjoying my life so much more. There are still bad days/weeks, but I know they’ll pass, providing I pace!
I like The Spoon Theory a lot, but still think others find the concept hard. I recently wrote an article on The Mighty, where I described my pain levels like a bank overdraft. In a ideal world, I wouldn’t be into my overdraft at all, but most days I am. Some days, I wake up way over my overdraft. Pacing is all about decreasing your overdraft level. It is much better for me to stay at a constant 30% overdrawn, than to spike up and down, and end up 330% overdrawn. Life at 30% gives me a much better quality of life. You never know, one day, we might even end up out of that overdraft into positive figures!
IS disclaimer: http://bit.ly/2vAPzbI
Tickets available now-EDS Support UK & HMSA Management and Wellbeing Conference
We are delighted to announce that tickets are now also available to non members who would like to attend the forthcoming EDS Support UK & HMSA Management and Wellbeing Conference (30 Sept – 1 Oct 2017) 
🙂. To find out more information on the fantastic line up of speakers and content and to purchase your tickets, go to: https://
HMSA 25th Anniversary Family fun day picnic!
The HMSA is a volunteer run charity supporting people with hypermobility related health problems, whatever the cause of their hypermobility. This event (hosted by our Hampshire Local Group Volunteers) is a celebration of 25 years doing exactly that, we intend to have lots of fun and will have volunteers on hand to answer more serious questions people may have about our work and services, the conditions we support, how we can help and how you can help us!
See poster for more information.
Growing up a Bendy #MarfanMonday
Growing Up Bendy – Marfan Monday
Growing up with a HDCT can often be quite tricky and Marfan certainly threw a few obstacles into my life as I grew up. I suffered with aching joints, often referred to as growing pains by my doctors, that I’m sure many of you can relate to regardless of which condition you have, but I was a pretty determined kid and if I wanted to climb that tree then I was definitely going to climb that tree. I think my Mum struck the perfect balance of letting me do what everyone else was doing but also protecting me from potential harm, for example I gradually stopped playing some sports during my PE lessons at school due to risk of rupturing my aorta or damaging my eyes.
There were also often things that I could do with my joints that I didn’t know others could do until my classmates were impressed by my bendiness, sensible adult Shona now knows that doing such tricks is not good for me but at the time it definitely seemed fun to freak everyone out. It was probably not until my teens that my true differences stood out though, I was always much slimmer than my peers and my long legs and arms were clear to see. I was bullied for this at the time but now I get only compliments about my long legs from people who wish they had them, of course they don’t know the reason behind them. Growing up I always thought that I would stand out all my life, I would never fit in and be like anyone else but now I am past those years I can see that standing out doesn’t have to be a bad thing. I get stares all the time when I’m whizzing around in my powerchair and back then it would have really bothered me but these days I just acknowledge that people can be curious and I whizz off and get on with my day!
Growing up is tough for everyone with all those with hormones racing around and whilst us bendies may have a few additional battles to face I know for sure that when you look back things usually don’t seem so bad!
– Shona (HMSA Marfan Ambassador)
