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13 Sleeps until the holidays! Kids and Teens with Lara Compton

Posted By HMSA Social Media Coordinator, July 6, 2018

My eldest met her new teacher yesterday, I must admit, it’s made me feel quite nervous – having to go through all of her needs again in September. And she’ll be in Year 6, so we’ll have to tackle the residential too.

These are only my fears, my daughter is as happy as Larry – so we must be doing something right.

She has a care plan, which is up to date, and I’ll definitely be ordering some more of the HMSA booklets for educators, particularly, as now our youngest has been diagnosed with hypermobility by my GP too – we already knew of course, it’s just formal now.

Both girls got glowing reports, and what struck me is their determination to keep going, despite the odds. I’d imagine that most of our children and young people come under that bracket, as do we as parents. Sometimes, I think we all play down this determination, as it becomes our normal – but I’d like to recognise it, in all of us today – well done all of you for keeping going through pain, injuries, exhaustion, hospital appointments, disappointments, and so much more!

And for now, we are going to continue counting down the days until we can turn off our alarms!! 13 sleeps for us! Woohoo!

– Lara Compton – Social media volunteer

Welcome along to this week’s #SelfCareSunday!

Posted By HMSA Social Media Coordinator, July 1, 2018

We usually use this time to relfect on the week just gone, how we did with our self care, pacing, self management ect.

This week, I would like to us to look forward…

How will you plan your week to ensure you give yourself some ‘me‘ time? I know a lot of us will feel guilty for wanting or needing time to ourselves, we really shouldn’t. Even if it is making sure you give yourself half an hour to have a long soak in a hot bath. I set reminders on my phone to ensure I do something I love. This helps with pain reduction and distraction techniques from pain. It could be anything from a bath, to meditation, deep muscle relaxation, pilates class, swimming etc. – Kim 🙂

Achievements and Hobbies with Hypermobility by Sophie Harvey 

Posted By HMSA Social Media Coordinator, June 30, 2018

Around this time last year, I was officially diagnosed with Hypermobility Spectrum Disorder, but I also set up my Etsy shop. My shop has been a fantastic pain management technique, taking my mind off the joint pain caused by Hypermobility. I named my Etsy shop ‘Wend And Amble’, as a reminder to myself. To ‘wend’ means to go in a particular direction by an indirect path, and to ‘amble’ is to walk at a slow, relaxed pace. It reminds me that even though Hypermobility has made me slow down, I will achieve my goals, just in my own way and at my own pace. I have learnt a lot over this past year from working on ‘Wend And Amble’ with Hypermobility.

One of the lessons I have learnt is that there is no ‘normal’. If I feel I am doing things differently to everyone else, that is true. Everyone lives their life differently to everyone else. So, I’ve tried not to think about what is the ‘normal’ way of doing things, rather what is ‘normal for me’. If that means I achieve things slowly, or in an adapted way, so be it.

Trying to aim for progress instead of perfection has been important to me. I strive to enjoy the process of doing something and celebrate the progress I have made. I tend to forget how far I’ve come, so it’s great to celebrate the little achievements along the way, just as much as the big ones.

I also try to focus on what I can do, instead of what I can’t. When I find myself comparing myself to others, I try to focus on my current progress towards what I want to achieve. I know that I will get there, just one step at a time.

Now I have come to understand that taking breaks and resting is an achievement too. I’m making sure I have enough energy to do what I want to do. It’s like the oxygen masks in airplanes – they tell you to put your own mask on before helping others.

I also know that setbacks are part of the process and that’s ok. I try to see them as a way of re-evaluating what is working and what isn’t. It’s an opportunity to know what I can do better next time. It’s still progress.

In addition, I try draw on the experience and expertise of family, friends, the Hypermobility Syndromes Association and professionals when I am trying to work out how to achieve things. I am continually in awe of the amazing ideas they come up with to help me achieve the goals I would like to accomplish. I listen to their ideas and then try to trust my instincts about which ideas feel right for me to move forward with.

Lastly, one of the most important things I have come to understand is that, as long as I am doing something I value, then I am achieving something. If it is contributing to the kind of person I strive be and I am doing my best, that is all I can do. There is hope, and just because I have Hypermobility Spectrum Disorder doesn’t mean that I can’t achieve things, it just means that I achieve things at a pace and on a path that is normal for me. I am wending and ambling and that is completely and utterly ok.

Kids & Teens – It’s so hot!! How are your little people coping?

Posted By HMSA Social Media Coordinator, June 29, 2018

Both of mine are very grumpy and tiring extremely easily, which is of course exacerbated by the heat making it hard to sleep!

My eldest has still wanted wheat bags for her pain at night. My youngest has turned into a big, red, sweaty mess. We are eating lots of ice poles, and drinking as much as possible. There’s quite a bit of playing with the hose (and soaking the dog, but let’s not mention that bit haha).

One thing we’ve found that really helps my youngest is a cool mat. It’s filled with a cool gel – it’s quite heavenly, and was actually bought for our puppy…. You can get them in home bargains, in the pet area for about £2.99.

I suffer awfully in the heat and my favourite heat buster is a special cooling towel that I bought from Amazon. It is a silky texture with lots of little holes over the surface. You soak it, and then wave it around in the air. I then wrap it round the back of my neck, or over my feet/wrists. When it starts feeling warm, you just wave it around in the air again – amazing!!

As always, love hearing other coping tips/products, there are always things I’ve not heard of!

Lara Compton – Social media volunteer

Kids and Teens – Positive achievements & Sports day

Posted By HMSA Social Media Coordinator, June 22, 2018

Last week we spoke about achievements, so I thought we could think about sporting achievements, in particular sport’s day… Which is probably relevant to all of our young people at the moment.

This year is my daughter’s first sports day post-diagnosis, and unfortunately not one she will be partaking in. My daughter actually really enjoys sports (as did I many years ago – well, apart from running!!!) but unfortunately, this year, injury is preventing her from taking part. She’s disappointed, and hating all the practice sessions where she sits and reads – despite the fact she loves reading.

So to counteract the disappointment and upset, we’re focussing on past sporting achievements, non-sporting achievements and generally working on her self-esteem, as it’s definitely taken a knock. We’ve done this by making sure she has a really good book to read(!) during practice lessons, making a really big deal out of a choir concert she just performed in, as well as pointing out her perseverance and courage.

How has sport’s day gone for you guys? And how do you deal with potential sitting on the side-lines? Any extra tips would be most helpful too.

Lara Compton – Social media volunteer

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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