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PoTs UK conference – Hannah Ensor

Posted By HMSA Social Media Coordinator, September 8, 2017

Our kids and teens Patron and HSD ambassador Hannah Ensor, attended the PoTs UK conference. Hannah was representing the HMSA Charity! We will have more info for you in the next enews! 😀

This took place Friday the 8th September.

Thank you Hannah!

Blogged by Debbie Hardwell – Pain

Posted By HMSA Social Media Coordinator, September 1, 2017
It literally is a pain!
We are all different in how we manage it and there is not necessarily a right way – it is what works for you. Medication is not always the solution; sometimes it is adapting how the mind and body reacts to that pain and learning to recognise to stop before falling down the hole and then having a big climb back out.

I am never sure if it is unfortunately or fortunately that for me, the only thing available to me is Paracetamol. I have intolerances to other pain relief. This has left me with the option of it being about how I manage the pain.
In the early days of my diagnoses, I was on a mission to fight the pain, and push through barriers, I would show it who was boss! But in reality this was not so, for all I was doing from this approach was exhausting myself and having several episodes of boom and bust.

Through my learning of Pain Management I have learnt to tap into the pain, acknowledge it and to accept it. Rather than push through, I will recognise what my pain levels are at and how much my body can cope with today.
I have always been a planner and that now helps me through. I look at what I’m going to be doing, how long can I do it for, and will it need several attempts. If I look at the garden as an example, I am unable to do to the bigger tasks, but give me a seat and some pots and I can sit and make them look pretty. It is even possible to sit and prune roses. Depending on how I’m feeling I may only do 10 minutes, another day I may manage an hour. You have to start listening to your body and tuning it to what it feels like it can cope with today. In the past I may have thought 10 minutes! It’s not worth it!, but it is worth it. Anything that encourages us to keep moving and to get enjoyment is always worth it. It also means you are not giving up – you can still live with pain and have a happy life.

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Posted By HMSA Social Media Coordinator,

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

Posted By HMSA Social Media Coordinator, August 25, 2017

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:

Tickets available now-EDS Support UK & HMSA Management and Wellbeing Conference

Posted By HMSA Social Media Coordinator, August 22, 2017

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:

The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

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