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Tips for Carers by Sophie Harvey

Posted By HMSA Social Media Coordinator, July 28, 2018
Being a carer can be tough. It’s hard to see someone you love suffer. I have been in the situation of both being a carer and a patient, so I have experience from both sides. I have learnt some things along the way and these are the things that I have found most helpful for me. 
One of them, is having something to just take my mind off caring for a bit, a way to recharge. For instance, a distraction like a hobby, sport, seeing a friend, or disappearing into a good book. Carers take on a lot of responsibility, so I think enjoying and engaging in things that can take my mind off caring for a while is important. I am of more use to the person I am caring for when I am recharged, rather than when I am exhausted or emotionally drained.
Another thing I have found useful for me is researching the condition. It can be scary seeing a loved one in pain and not knowing why it was happening or what I could do about it. However, researching the condition and understanding why things were happening and what sort of management techniques there are, helped take some of the distress and worry away from the situation.  
It was also vital for me to know that when the person I care for is grumpy or angry, the majority of time they are not angry or grumpy because of me. They are grumpy or angry because of the symptoms. I try to know when it’s the person talking and when it’s the symptoms talking.
Similarly, even though the illness is a big part of their lives, I try to see the illness and the person I care for, separately. I know that they are still just a person and try to talk about things other than illness and quality spend time together. Even if it’s just watching sitcoms together. Being a carer can be very serious, but I try to remember to laugh and not take all things so seriously all the time. As corny and as cheesy as it sounds, ‘Laughter is the best medicine’. I try to remember that and to spend quality time with the person I care for despite the illness.
When the person I care for is going through a rough time I tend to worry about them. However, when that happens I try to ask myself ‘What can I do about it?’. It’s a way of reducing the amount of worrying I do because if I know I have done everything in my control to help them, I am doing all I can. I can’t cure them but I can care for them. Sometimes the answer to my question ‘What can I do about it?’ simply means I could send them a message with a joke in it to cheer them up before a medical procedure, or make them a cuppa, or give them a hug when they’re having a rough day.
Other times when I don’t know what to do, I ask ‘How can I help?’. Even if the answer comes back ‘Just leaving me to rest’ asking that question makes me feel like I am doing everything within my power and control to help them, and that reduces the amount of worry I have. I am doing the best I can.
Listening is one of the most powerful and useful things my carer does for me. Just knowing they’re there for me makes a massive difference. Equally, when I put my carer hat on, having someone to listen to me and talk things through with is helpful in the same way, too.
Knowing that it doesn’t have to all be on my shoulders has also been important for me. Asking for help has been vital. Whether that’s asking for help from friends, family, neighbours, or professionals. Also, simplifying life a bit like occasionally, doing online grocery shopping, buying pre-cut veg, ready-made food, or asking someone to help with housework can help to take the strain off for a bit. It doesn’t always have to be all on my shoulders and I can ask for help if need be.
In addition, not being afraid to talk things through with the person I’m caring for is important. I used to avoid it because I didn’t want to worry them but just because they’re ill doesn’t mean I can’t talk to them about things. They know the situation and can help.
Letting at least one person at school or work know that I’m a carer has also been useful. This is because if something came up for example, if I missed a deadline and required an extension because I had to do something carer related, then they knew why. It saved me from having to explain it all from the beginning when something cropped up.
In conclusion, know that you are not alone, you’re doing your best, remember to laugh, enjoy life and ask for help if you need it. Also, keep going, you are doing so well.

HMSA announces Dr Phillip Bull as a new Trustee!

Posted By HMSA Social Media Coordinator, July 6, 2018

‘It is great to welcome Dr Bull to the board. His governance experience and knowledge base developed throughout his NHS career will be a significant benefit for the HMSA, as it moves forward with its plans for the next 5 years. Fantastic news!’ – Donna Wicks CEO

Dr Philip Bull, FRCP

Dr Bull trained at St Thomas’ Hospital Medical School and then undertook senior specialty training in both Rheumatology and Acute Medicine at a Westminster and Charing Cross Hospitals. He worked as Consultant Rheumatologist at East Kent Hospitals University Foundation Trust based at the William Harvey Hospital from 1990 to 2014. During that time he developed a major interest in joint hypermobility and also held a senior management role as Clinical Director for medical services from 1994 to 2010.

Dr Bull has brings  his particular experience in hypermobility spectrum disorder and service development as Deputy Chief Medical Advisor to the HMSA. With regards to his clinical practice ( private) these include two rheumatology clinics , at the ‘One Hospital’ in Ashford  and  also ‘The Chaucer Hospital’ in Canterbury.

Dr Bull is also involved in medical education , running a rheumatology syllabus for East Kent Hospitals  medical students and junior doctors as well as local GP’s , health professionals and patient groups.

Dr Bull is the clinical lead  for the Kent Hypermobility Network and works on a voluntary basis for the HMSA and also, as a hospital governor for East Kent Hospitals. He has a particular interest in the Alexander Technique and Mindfulness.

In his spare time , Dr Bull plays bass guitar in an acoustic rock band.

Dr Bull joined the HMSA’s medical advisory board in November 2016.


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

Posted By HMSA Social Media Coordinator,

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.

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.