Latest News

Adapting Activities to do with Family and Friends by HMSA’s content creator Sophie Harvey

Posted By HMSA Social Media Coordinator, November 21, 2017

Being able to do activities with my family and friends is important to me, but like most things with chronic conditions, making adaptations has been necessary. I remember thinking social things were just going to tire me out. Thinking, ‘If I can’t do it well, then I won’t do it at all.’ I ended up isolating myself from family and friends, because I thought ‘If I can’t interact with them the way I used to when I was ‘healthy’ then there is no point.’ However, now I realise the people who genuinely care about me, are the ones willing to spend time with me no matter what we’re doing. It doesn’t have to be all or nothing like I thought it was.

Through lots of trial and error, I have now found activities that allow me to spend time with family and friends, without putting me into ‘zombie mode’ for the following days. For example, we go for drives instead of whole days out. In the car we can have a chat, listen to music and explore new places together. It’s perfect for me because it’s minimal walking, and I can use my energy to engage with my family and friends while I am seated and comfortable. Also, instead of spending 3 hours at a party I only stay for 30 minutes to an hour. That way, I can still have fun and participate whilst pacing myself. In addition, rather than playing games like Trivial Pursuit or Settlers of Catan, which require a lot of mental energy, we can play luck based games like Spoons (perfect for a Spoonies!), Snap or Ludo. Adapted activities like these, still allow me to have fun with family and friends whilst pacing, and without missing out because of my symptoms.

Being open and honest about my symptoms has allowed the people close to me, to see where my limits are. They’ve learnt to be flexible. And really, my friends and family don’t mind doing these adapted activities if it means we are together, and making memories. It’s the shared experiences that count. Having something to talk about, something to connect, and say ‘Oh remember that time when…’. It doesn’t have to be all or nothing like I use to think it was. It doesn’t matter if we’re simply watching funny cat videos together. It’s still making memories, still spending time with each other, and still making a connection. That’s what really counts.

There are people out there who are willing to spend time with you no matter what adaptations you need. They are the special ones. Now, I will leave you with this Dr. Suess quote: ‘Those who mind don’t matter, and those who matter don’t mind.’

Sending you all lots of spoons!

Sophie

IS disclaimer – http://bit.ly/2vAPzbI
For more information and support, please visit hypermobility.org . If you have a story or article to share please contact kim@hypermobility.org

I Am a Zebra – Hypermobility and invisible disabilities

Posted By HMSA Social Media Coordinator, November 20, 2017

A wonderful video by Brogan Lawes

People’s exteriors can be deceptive; when you look at a person, what do you see?

Please share this video to help raise awareness.

‘I’m a media student with HSD and most symptoms of EDS. I’m currently coming to the end of a project which I hope to share to raise awareness for HSD, EDS, and invisible disabilities. The title is ‘I am a Zebra- HSD and Invisible Disabilities’ and it is a video piece with spoken word poetry, visualised with projection mapping’

Please help spread the word – Giving GPs the Tools

Posted By HMSA Social Media Coordinator,

Please feel free to cut and paste this to your Facebook pages.

Can I ask my family and friends to donate to the Hypermobility Syndromes Association’s ‘Giving GPs the Tools’, rather than send me a card and presents this year?

Just Text HMSA13 to 70070 followed by 5 or 10 (£s).

For smaller amounts I will provide a VirginGiving link at the end of the month.

The HMSA has a new campaign being launched on the 30th November 2017, which is targeting GPs with education and training resources.

It will help everyone who are already diagnosed, as well as those who are yet to be so. Over 55% take 10 years or longer to get a diagnosis. I was one of these people, as was my Mum and children. If we could have had help sooner it would have given us so much more support and understanding of how to live well with the conditions we have.

The campaign will be an enormous help to people with Hypermobility Spectrum Disorder or joint hypermobility syndrome, Ehlers-Danlos syndromes, Marfan syndrome, Osteogenesis Imperfecta, PXE and Stickler syndrome.

More information can be read on the charity Facebook page /TheHMSA

Don’t forget the campaign goes live on the 30th November!

Only a couple of weeks to go to the launch of the HMSA’s ‘Giving GPs the Tools’ campaign

Posted By HMSA Social Media Coordinator, November 14, 2017

The HMSA receives comments like the below everyday. This has to change. Help us to make sure that you are believed, your needs are understood and you get the support you need from your GP, by supporting the campaign when it goes live on the 30th November.

All I want is to be believed. There is no point in going to my GP;

They just fob me off with pain killers and do nothing for me.

I have no one to help me. I have been told I have been placed in the working group for ESA. I can’t work! I sleep all the time
and I can barely walk…

You can Just Text HMSA13 to 70070 followed by the amount ( 5 or 10) you wish to donate, if you would rather donate now to the campaign.

hEDS and the 4 P’s By Carla Spear

Posted By HMSA Social Media Coordinator, November 13, 2017

Living with Ehlers Danlos syndrome (EDS) isn’t easy and it can be hard to deal with the knowledge that there is no cure. I spent years refusing to accept there wasn’t a cure and on a few occasions even wished for a magic wand. Over time, I’ve come to realise that it is possible to ‘manage’ my condition with the correct balance and I have created my own guidelines to help me.

As a rule of thumb, I try to stick to the 4 p’s to manage my EDS and related conditions. With a balance of these, I’ve found it is possible to maintain some control over the condition and prevent deterioration. Having a good support network will also help you on this journey – be it friends, family or professionals, they are there to help you and can be a huge asset when you’re struggling.

I think of living with EDS as similar to being on a rollercoaster – it goes up and down, there are good and bad elements, and the speed of the progress varies continuously.

Physiotherapy:
Building muscle to strengthen the joints is essential as these can be used to help hold our joints in place. Once muscle has been lost, it takes much longer to get it back. I learnt the hard way how quickly muscle mass is lost when exercise is stopped and now make a point of doing daily exercises – these exercises vary depending on how I feel and what my body is up to. Finding the right type of exercise suitable for yourself is essential and can take time – what works for one person may not work for another. It is important to remember that pain when doing physio isn’t always a bad thing. If it is agony, stop the exercise. If it is aching a bit, that may mean the muscle is beginning to respond. Over time you should be able to increase the repetitions and it may vary on a day to day basis, based on how you’re feeling. Keep at it though – it is worthwhile.
Over the years I’ve come across a lot of other people with EDS who have gone to their Dr or Rheumatologist for help and have left feeling angry/upset/misunderstood/disappointed/dismissed because they were told to exercise. Physio does help – it is not a cure but is key to managing EDS. It doesn’t have to be hospital based and not all exercises are suitable for everyone but it has been proven that physio helps. There is no miracle cure for EDS – it is a case of managing the symptoms. Most people when they hear the word physio, automatically think of multiple exercises in a hospital or the dreaded physioterrorist shouting like a drill sergeant. Not so – physio can be done in the home and even incorporated into everyday activities such as making a cup of tea: make sure you are standing properly, practicing good posture, activating your core muscles and moving with control. Be aware of noticing how you are standing and where your body is in space. Our proprioception is often poor and can be improved using compression, however I find that just stopping every so often and taking note of where everything is can improve spatial awareness.

Pain Management:
This does not only have to involve tablets and injections, it is so much more than that, as I learnt on a pain management course. A few years back I was on a whole cocktail of medications, but didn’t think they were helping me much, so over time I stopped taking them (under medical supervision). Pain management isn’t just about drugs and medication, it’s about having a toolkit that you can utilise when you need to (see page 73 for details of Pain UK’s Pain Toolkit) – if I’m in severe pain and have taken my basic medications, I then try distraction, relaxation, deep breathing etc. This doesn’t always work, but I find it much more preferable to taking more pills.

Pacing:
Pacing is key to managing EDS, however it is much easier to say than to put into practice. It’s not always possible to pace when life throws curve balls at us, but so long as the basic principle is there, it is possible to manage most things without burning out afterwards.
There are, of course, also times when it isn’t possible to pace, so, in those instances, it is a good idea to have a recovery plan lined up.
I would recommend anyone with EDS to draw up a “coping plan”. On my kitchen door I’ve stuck up a ‘relocation plan’ that I refer to if I get stuck with a dislocation. This is tailored to me, but includes pain meds, relaxation, distraction, traction, heat/ice…with the last resort to call for help. The plan you draw up will be specific to you.

Posture:
Many people may be surprised to see this one in the selection, but, from experience, I have learnt that whilst sitting like a sack of potatoes may be more comfortable, it can put more pressure on the spine in the wrong place and eventually result in more pain further down the line. Making sure you are aware of your posture isn’t easy, especially when you have proprioception issues, but I’ve found that even taking a moment every so often, to make a note of how you are sitting or standing and then improving it, can help over time.
Hannah Ensor, HMSA Patron, agrees:
‘I regularly give a talk at events, such as the HMSA family programmes, explaining that exercise equals ‘controlled, good posture and movement’. Exercise is really important in managing hypermobility syndromes, but, as Carla has explained, the important thing isn’t how many repetitions of an exercise you can do, or how much weight you can lift, but how well you can keep your joints in good positions throughout the movement. Even doing housework can be exercise, but only if it is done with a focus on keeping good posture and using joints well. For example, when making a cup of tea, ensure your core muscles are engaged, and knees are soft (not forced backwards into hyperextension) then lift the kettle with shoulder, elbow and wrist all well positioned – this not only reduces subluxations and dislocations, but also allows joints to be strengthened slowly and steadily. Activity done in the floppy desperation of ‘I must get this finished before I collapse’ kind of way, which is so familiar to many of us, doesn’t count!’

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This ‘Your Say’ piece was originally featured in an HMSA Journal. The Journal is an HMSA member’s benefit sent out twice yearly. To become a member visit: http://hypermobility.org/membership/

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The following HMSA publications cover the above subjects and much more:

– Living well with a heritable disorder of connective tissue
– An Educators Guide to the hypermobile student
– Persistent fatigue and heritable disorders of connective tissue
and can be ordered from: http://www.hypermobilityshop.org/epages/78166025.sf/en_GB/…

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RESOURCES:

More on physiotherapy can be found at: http://hypermobility.org/h…/physio-and-occupational-therapy/

More on pain management can be found at: http://hypermobility.org/help-advice/pain-management-2/
http://hypermobility.org/…/pain-man…/pain-relief-techniques/
http://hypermobility.org/…/pai…/pain-medication-information/

More on pacing can be found at:
http://hypermobility.org/hmsa-blog-pacing-by-sarah-wilson/
https://stickmancommunications.blogspot.co.uk/…/hidden-disa…
http://hypermobility.org/help-…/kids-teens/coping-at-school/

More on posture can be found at: http://hypermobility.org/…/physio-and-o…/supports-orthotics/
http://hypermobility.org/help-…/kids-teens/coping-at-school/

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Image attribution: Original image – Free Clipart from Clicker.com by Terrance Johnson 08/03/2011


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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