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Postcard from New York…

Posted By HMSA Editorial Team, May 9, 2016

AlanRodney

Dr Alan Hakim and Professor Rodney Grahame who many of you will know, and who have both given huge support to the HMSA and those with Ehlers-Danlos syndrome over the years, were both key speakers at the EDS Symposium in New York.

EDS Awareness Month blog post – Sarah Wilson

Posted By HMSA Social Media Coordinator, May 6, 2016
EDS Awareness Month
 
May is EDS Awareness Month.
 
I’ll be flying the zebra-striped flag and telling anyone that will listen about EDS – no change from any other month, but since we have these 31 days dedicated to EDS, it’s best to use them wisely, to shout it from the rooftops etc.
 
EDS Awareness month is to not only raise awareness but to educate, so please do try and get involved. Even if it’s sharing something from the HMSA Facebook page or writing a tweet using the hashtags #EDSAwarenessMonth #MayWeSay – the more it’s talked about, the more awareness is raised.
 
Keep a look out on the HMSA Facebook and Twitter

May we say… it’s Ehlers-Danlos syndrome awareness month!

Posted By HMSA Editorial Team, May 1, 2016

#EDSAwarenessMonth is our chance to talk about the unseen effects EDS can have on a person without a casual observer ever noticing. From anxiety and analgesia side effects through to pain and palpitations if you really think EDS is just about hypermobile joints, you have things all inside out.

We want your pictures, specifically those that show you “looking well” along with a description of all the difficulties the picture doesn’t show. This example is of our patron Hannah Ensor dancing, doesn’t she look marvelous? #MayWeSay… this image does not give any indication of the months of preparation involved, the palpitations, fatigue or the hour it took Hannah to get her heart rate back to something approaching sensible and regain the ability to sit upright after the performance!

HannahDance

HMSAEAM

Send us your examples, what’s your favourite image of yourself and what doesn’t it show about your EDS?

#EDSAwarenessMonth #MayWeSay… Step up out of the shadows!

23K #HMSAGiveaway on Facebook

Posted By HMSA Social Media Coordinator, April 28, 2016

Hi everyone! In celebration of having 23,000 likes on Facebook we are running a giveaway until Saturday the 30th April at 6pm. The winner will be announced at 9pm!

To enter all you have to do is comment on the Facebook post with what is your main obstacle for this year you would like to overcome?

Mine would be to work on my anxiety issues and practise relaxation skills to try and achieve this. It could be anything you like from baking a cake from scratch or planning a trip away! Whatever you like, whatever it is we would love to hear your thoughts!

Good luck to you all! ‪#‎HMSAgiveaway‬

It’s not essential but sharing is caring 😉

You can find the Facebook post here

23k giveaway

HMSA blog – Pacing by Sarah Wilson

Posted By HMSA Social Media Coordinator, April 22, 2016

HMSA Blog

Pacing

I’m sure you’ve heard this word hundreds, if not thousands of times before, and trust me, I’m sick of it too. But, once you realise and understand how helpful it is to pace yourself, you’ll find you do things a lot differently, and not suffer so much.

I’ll let you in on a little secret, we’re all bad at pacing (at the beginning), it takes time, effort and a lot practice to get to grips with it. I’m no master, I still find myself trying to push my limits on the odd occasion but there’s a voice in the back of my head that tells me I need to pace. I need to remember how I’ll suffer. I need to stop; stretch; do another activity.

Pain has so many adverse effects on the sufferer; lifestyle changes, mood changes, body, relationships – there’s a lot to deal with when living with chronic pain. The common denominator with chronic pain sufferers is that they tend to push themselves, they do too much, they don’t stop until they’re in so much pain they can no longer move, and then pay for it for days if not weeks afterwards. However, once the pain eases, the sufferer does the same thing, there’s no learning from the pattern; the vicious cycle of over-activity and intense pain goes on and on and on.

I know it’s frustrating; I’m more than aware how difficult it is to stop doing an activity you really want to finish because you’ve started it and you’ll feel less stressed if it’s complete. But is it worth the agony? Can you do it tomorrow? Can you find an alternative way of doing it? Can you ask for help? Asking for help is a whole other post, so we’ll leave that there.

The amount of times I’ve worked myself up really wanting to wash my hair, been in agony, washed it anyway, and paid for it, is ridiculous. Who cares if my hair is a mess? I’m not leaving the house anyway. I’m the only one paying the price. And for what? Clean hair that nobody will see.

On your good days you do too much, and on your bad days you do nothing – thus leading to underactivity and deconditioning. Neither is good. There needs to be a balance.

So how do you break the cycle? Find the pattern that causes flare-ups for you, everyone will be different. I recognised that I like to get everything done in a short space of time, on the same day without regular breaks, and practically killing myself in the process. With pacing, I can break this up and use the whole day to do my tasks, leave the more strenuous ones for my partner, and take regular breaks.

I also find the Traffic Light technique extremely useful. For this I will plan my days in advance and make a list of things that need to be done on particular days. I then rank these tasks with Red, Amber and Green.

Red = Difficult/Challenging
Amber = Tolerable
Green = Easy

I split up my tasks/chores for the days so there’s a mixture of Red, Amber and Green. I don’t put two Red tasks straight after each other as that would be far too difficult and cause pain.

Examples of Red tasks for me: Ironing, hoovering, showering
Examples of Amber tasks for me: Writing at laptop, driving short distances
Examples of Green tasks for me: Gentle stretching, reading, relaxation

Planning is very important with pacing too, they go hand-in-hand, and you need to plan what you’re going to do in order to pace properly.

It’s important to take into account pacing sitting and standing too. I make sure that I move about and do some gentle stretches if I’m sitting for a period of time otherwise I get stiff and sore.

Pacing is a learning curve, don’t beat yourself up if you could have done something differently, you can always pace again tomorrow.

I hope this little introduction to pacing helps, feel free to leave me any comments or questions and I’ll get back to you as soon as possible.

Sarah


Disclaimer
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.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.
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