Latest News

Kids & Teens – Pacing by Lara Compton

Posted By HMSA Social Media Coordinator, June 1, 2018
Pacing is a hard concept for any of us, but most of all for children and young people. In a world full of peer pressure, it is incredibly difficult to pace – and let’s face it, that doesn’t even really go away as adults does it? How many times have you had pressure applied to attend a social gathering, or to “stay late this time” or to make sure you “have a drink.”  
Although friends and family are generally well-meaning, they often do not truly understand actually what conceding to the pressure actually means – days, or weeks, months sometimes of being able to do nothing but the school run, a flare of dysautonomia that can last equally as long, a bad subluxation – or multiple dislocations if you’re lucky. And those are just a few of the items on a long list of after-effects that you can encounter.
As an adult, I know now that the biggest answer to avoiding the boom and bust is to listen to your body – and then be firm in your decisions. This can feel incredibly difficult, and uncomfortable – but I try to keep an inner-dialogue going in my head, reminding me why I’ve made the decision I have.
But how can we apply this to children and teens who want nothing else but to be “just like their friends?”
My eldest is on the hEDS diagnostic pathway, she’s at that awkward pre-teen stage – and although she is pretty sensible most of the time, she also experiences a lot of anger and upset when she can’t do the things her friends can. She was told by a consultant last year that she needed to avoid running. Full stop. A different child walked out of that appointment. However, through experience (and many injuries) she’s learning that the consultant was right to advise against running in her case.
In our family, we very much take the stance that our daughter will learn through her own experience far better, than she will with us or anyone else “telling her” what to do. Yes, this has meant further injury, and yes, we have tried to discourage her at times – but ultimately, she has to learn to listen to her body, just like I do.
How do you help your children to pace? Do you pace as a family? What are your best pacing tips?

Information Standard coordinator – Deborah Terry

Posted By HMSA Social Media Coordinator,

Here’s a lovely piece from our Information Standard Coordinator on how you can trust that ours has been carefully verified and can be confidently passed to medical professionals. It’s at the very heart of what we do.

Having a chronic condition, particularly if it runs alongside other medical challenges, we become very good at research. We may be fortunate and have great support networks both online and in face to face groups and we often gain a lot of information in this way. Some of this information that has already helped people within our community; people just like us and our families. What happens then? What if the next step is taking this information to our care provider with the aim of moving forward and identifying what could help with our management. This could be our GP, physiotherapist, consultant or other professional. Taking information to a healthcare professional needs to be done carefully and with thought. It is very common nowadays to be inundated with articles gleaned via ‘Dr Google’ and some can be just anecdotal evidence.

Your medical professional would want to see evidence-based information; particularly if it is an area beyond their scope of practice or something that they have not thought of currently offering. This is where using the charity connected with your condition comes in. At the HMSA, we are accredited by the NHS England’s Information Standard. NHS England supported, and eventually became the overseer of the Information Standard.

It had several aims, including;

• improving the quality of information available to the public,

• to guide organisations in how to produce evidence-based health and social care information

• to show the commitment of those organisations which gain the accreditation in producing good quality health and care information that all should be happy to rely on.

 

Those organisations that carry the Information Standard go through a rigorous process for each piece of information that they produce and display. The Standard is made up of six principles with underpinning requirements, informed by best practice for producing good quality usable health and social information.

Member organisations have demonstrated, with supporting evidence, how they have met these requirements:

• Information Production – you have a defined and documented process for.producing high quality information

• Evidence Sources – you only use current, relevant and trustworthy evidence sources

• User understanding and involvement – you understand your users and you user-test your information

• End Product – you confirm that your finished information product has been developed following your process and is of good quality

• Feedback – you manage comments/complaints/incidents appropriately

• Review – you review your products and your process on a planned and regular basis (1)

 

All of our articles and information pieces at HMSA are subject to these principles and carry the Information Standard mark. You can use this information with confidence during appointments, knowing that it has the NHS England’s stamp of approval as good quality information. We are looking for target audience reviewers to help with our user testing. Whether you are at the start of your diagnosis journey, or have a large understanding we have articles that need your input. For further information and to volunteer please contact Deborah Terry, IS Co-ordinator Deborah@hypermobility.org References: (1) 

CALL for participants for my study “Feeling good despite EDS”!

Posted By HMSA Social Media Coordinator, May 30, 2018

 

Please note: The study has received ethics approval by the Psychology Departmental Research Ethics Panel (DREP) at Anglia Ruskin University.

Are you…

þ 18 years old or older?

þ Diagnosed with EDS (any type)?

þ Motivated to contribute to research about treatments designed for EDS?

þ Interested in improving your health and well-being?

þ Fluent in the English language (no matter the citizenship)?

IF YES, participate in the 5-week online programme based on positive psychology! Positive psychology focuses on how we can become happier and more fulfilled. The programme includes different exercises, writing and reflection tasks about kindness, strengths, hope, gratitude, etc. Click on the link here If you have any questions, please contact me via email at larissa.kalisch@student.anglia.ac.uk. Thanks a lot for your support!!

HMSA members and GDPR

Posted By HMSA Social Media Coordinator,

*Dear current members of the HMSA Charity*

As you maybe aware, GDPR is now in full force as of the 25/05/18. To enable our members to continue to receive the full benefits of their membership, we ask you if you can fill in this simple form: http://bit.ly/2kCPWxI – *Please note* if you cannot find your membership number, do not worry, as long as your details are correct on our database, we should be able to find you 🙂

If you are a current HMSA member and are not using our Facebook group for members, you can find it here: HMSA Official FULL members-only group.

Family memberships can also join this group too: HMSA Family and Educational support

Please do bear in mind, with the current workload this has caused and the manual process of checking of memberships, allowing access into these groups maybe delayed. To comply with GDPR, we cannot assume that you are still in agreement for us to contact you or store your data etc. We are very sorry to say that members who have not completed the form will have limited benefits of membership until we can resolve the issue. This is because the HMSA does not have a choice under the new regulations and could face a hefty fine if we do not comply. As a small charity, we would be unable to absorb this cost. We apologise for any problems this may cause.

Relaxation by Lara Compton

Posted By HMSA Social Media Coordinator,

When I saw this month’s theme, it struck me instantly. Relaxation and me do not go together naturally, I don’t really know why completely, but I do know one thing that contributes to my inability to relax. Guilt.

Guilt is without doubt the biggest barrier to my entering a chill out zone. I’m pretty sure a lot of you can relate to that. I have hEDS (hypermobile Ehlers-Danlos Syndrome), orthostatic intolerance, and struggle with the related mental health issues that come with chronic pain. I am also a parent (bang goes relaxation right there!!), but not only a parent, a parent to two girls who both have additional needs. My eldest is on the EDS pathway, and has had more injuries than I can count in the past 12 months. And my youngest is autistic, but very verbally able – which comes with its on whole host of issues.

Anyone who is familiar with the diagnostic process of both Ehlers-Danlos Syndrome, and/or female Autism will know that everything, every little thing, is a fight. Getting a referral accepted with a paediatrician – fight. Finding a physio that understands hypermobility enough to treat you/your children – fight. Attempting to get school on board and understanding enough to meet your children’s needs – fight. Applying or PIP/DLA – fight. Getting your children up and dressed – fight. Then getting yourself washed and dressed – fight.

By this point, you can see that there’s not enough energy left to fight everything, and yet, as a parent, and an individual that wants to have a meaningful life, I have to fight. I just have to.

But where does this leave our inner state of zen? I can only speak of my experiences, and they are that my mind never stops. I’ve learnt over the years that my body must stop, I must pace, or my body falls apart (well, even more than normal!)… But it’s taken so much longer to learn that my brain must stop too – not completely, in fact, if I try and push away the busyness, it gets worse – ironic.

It took until my 35th year in this world to learn how to just “be,” to find parts of the day where I completely live in the moment.  Believe it or not, right now, as I’m writing this, I am here, I am feeling every word that I write, I am enjoying the sound of the thunder in the background, I can feel our dog by my feet and the air is humid enough to irritate me – but I am here in the moment, my brain isn’t listing all the things I *should* have done days, weeks, (months!) ago. My body is relaxed and not tensing up. Other than the humidity, I don’t feel any sensory overwhelm. I feel alive.

The key for me, in case you hadn’t guessed, was to practise daily mindfulness. Different people access mindfulness in different ways. For me, writing helps a lot. But when things are really tough, there are times when I can’t get my words out – sometimes for months. Other than writing, personally, I find stimulating certain senses works well. In the evenings, I very much enjoy having a bath, with a highly scented candle, and a Lush bath bomb, accompanied by one of my favourite music playlists.

During the day, I often listen to music that matches my mood, and take out an adult colouring book. My girls do this with me too, so it’s a great way of teaching them to build in some relaxation time into their day. And, as a parent, I am so aware that I am their role model – they will learn from me. And of course, this can make the pressure and guilt feel even worse! Particularly on negative spoon days… But, colouring is such an ideal way to still be there and present with your family when you feel unable to. Best part is, you can colour anywhere, in a coffee shop, on the sofa, in a park, in bed! I soon learnt to buy a very small pocket sized colouring book to lessen the weight I carry around, and I also found that gel pens are much easier to colour with as they just glide over the paper – and you can get glittery ones! Perfect. On days when I can’t focus on colouring, I sometimes find it easier to do adult dot-to-dots, as focusing on the numbers can help distract a busy brain.

It’s quite easy to then hit a point where everything you usually do to relax goes out of the window – suddenly I am in too much pain to even attempt a bath, I have too many “lists” in my brain to even focus on colouring, every piece of music I put on feels “wrong,” and ultimately I feel useless. Utterly useless.

My biggest piece of advice on the utterly useless days, is to give yourself a break, be kind to yourself. And I know that it’s so much harder that it sounds, but by being kind to yourself, allowing yourself to fall apart and truly feel how hard things are for a bit – sometimes that is a release that is much more needed than a failed attempt to relax…!

Recently I realised that I’d reached a place of pure inner relaxation, when I was able to mentally enjoy my massage for the first time. I’ve had massages every 2-3 weeks for probably about 5 years, and they massively help me to keep on top of my pain. I never understood why people found them so relaxing, number one, they hurt(!), but also, I spent the whole 45 minutes going through all of the lists and anxieties in my head. And this one day, I suddenly realised that I hadn’t done that, I’d actually just focused on the music and the smell of the massage oil – and I felt triumphant.

I can’t speak highly enough for mindfulness. I know that there will be many people that relax in different ways, but for me, mindfulness ticks every box – you can use it anywhere, at any time. You don’t even need any tools – you can literally just sit and focus on the birds singing outside. Particularly if you are new to mindfulness, I’d highly recommend giving an app like Headspace a go, they normally have a free trial period.

Apps can be great – when I can’t sleep, I also use a free app called Relaxio, which allows you to create your own background noise to fall asleep to. I couldn’t recommend “Bedtime Meditations for Kids” CDs by Christianne Kerr enough, they have been actual lifesavers at times – both for my eldest who can’t sleep due to pain, or my youngest who can’t sleep because of her busy brain.

I’ve always labelled myself as someone who is unable to relax – and I really was that person! But through lots of hard work, and effort, I am now a person who knows how to relax, how to be, how to accept that some days I can’t do any of it – and all of that? Well, it’s just fine.

To all of my fellow guilty mums/dads/partners/friends who struggle to relax – don’t give up, you just have to find your “thing.” And it might take decades like me, but us bendies have so much more on our plates- it takes just that bit more to unwind. But you can, and you will, and I strongly believe that by opening up and sharing our experiences that as a community, we will all succeed together.


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.