TODAY I HAVE SWITCHED BLOGS WITH MY FRIEND JADE FROM THE CHRONIC CHRONICLES. SHE IS VISITING FROM THE U.K. You can find her story here on my site and you can find my story on her site. I hope you like the traveling and I hope you will show both our sites so love today. Just wanted to say thank you Jade, you are awesome Thank you so much to Rena for hosting me on her blog today. My name is Jade and I have a blog called The Chronic Chronicles. I’m from England (which explains my spelling!) As well as writing about health, disability and chronic pain, I enjoy making jewellery and hanging out with my three cats. The question posed to me for this post was:
How has life changed since having a disability?
First of all, what’s wrong with you? I have a condition called Ehlers-Danlos Syndrome (EDS). It is a genetic connective tissue disorder that causes the collagen in your body to be faulty. Collagen is the ‘glue’ of your body, and when it goes wrong it impacts everything. Every organ, your skin, your joints, ligaments and tendons, as well as having an impact on the systems that make everything work. There are also a huge amount of secondary conditions that come along-side EDS, such as arthritis, Postural Orthostatic Tachycardia Syndrome, degenerative disc disease, and many more. There are different types of the condition, and I have Hypermobility Type, the most common. Many people call particularly flexible joints ‘double-jointed’, but the real term is hypermobility. You can have hypermobile joints with no problem, but sometimes it’s a sign of an underlying connective tissue condition.
So how does that impact you?
When someone has EDS, then their connective tissue isn’t doing the job it’s supposed to do – which is supporting the body, and so our muscles have to step in to do that job, and therefore work much harder than normal. As a result they often become locked in spasm. Even just sitting in a chair takes that much more energy than it would somebody else. Fatigue is also a huge issue, exacerbated by night-waking, insomnia and the sleep disorders that go alongside EDS. The condition is very painful, and the pain is constant. I personally have certain areas that always hurt. And then additional pain that changes each day depending where my latest injuries are, if I’m having a flare-up, or often for no reason that I can pinpoint, which is the most frustrating.
How quickly did that happen?
While Ehlers-Danlos Syndrome is genetic, meaning I was born with it, it was triggered more severely when I was 15, so I do remember what life was like before that. It’s not like I woke up one day to find my life had completely changed, instead it’s been a slow decline. I can chart the changes, for example taking the age of 15 as Year One, I could walk for 10 miles with no issue; Year 2 I found myself looking for a seat to calm my aching back; Year 5 I struggled to walk across my university campus; Year 7 I had to use a manual wheelchair to get around shops; Year 9 I bought my first electric wheelchair and my walking distance was counted in seconds. I can look at similar declines in energy levels, memory issues, injuries and so on. So life has obviously and irrevocably changed, in big complex ways and in tiny little ways I can’t even begin to explain.
Does everyone understand how you feel?
Think about how you feel when you’ve had a bad illness. Your body feels completely run down and achy, you struggle to keep up in a conversation, your head feels woolly, and getting up to get a drink can feel like planning an excursion to the North Pole. So you have to keep reminding people how you feel. But then you feel guilty about bringing it up all the time because you feel bad complaining. You don’t want to have to keep moaning, and you notice that eventually people start judging you.
“If you felt that bad, I would be able to tell.”
How much planning do you have to do?
One thing that got completely thrown out of the window is spontaneity. I can no longer receive a text from a friend inviting me out that day. It’s now all about the planning. Sometimes I might go out for a meal with a friend, or family member. First it’s important to have as much notice as possible so that I can rest up for a couple of days beforehand. Next are questions about the location – is it accessible for the wheelchair? Is there parking nearby? Is the surface completely level, or are there stairs to the seating area? Is there a disabled toilet available? What about the seats – are they padded and supportive, or do I need to take cushions with me? How far away is it, as the longer I have to travel, the more pain I’ll be in when I get there. Afterwards, will I have enough time to recover before my next activity, or appointment as planned?
So what do you enjoy doing now?
Because the amount I can do has changed so much, I find pleasure in other activities that I hadn’t even considered before. For example while I used to enjoy going to the cinema, visiting the town with my friends, or having an evening out with them – now my focus has changed to more solitary tasks, but ones I still enjoy such as crafting, reading, marathoning a TV series, or writing.
How has your attitude had to change?
I’m generally quite hard on myself, and like to keep busy. Sometimes if I end a day having done nothing, I feel like a failure. But I’ve had to start thinking that if the reason I did nothing was because I wasn’t well enough, or was asleep most of the day, that’s okay. I have to remember that doing anything when I feel that way – five minutes of website editing or responding to an email is still an achievement. I have to listen to my body and rest when I need to. I have to take care of myself, as I am the only one who can.
Is it easy to get help?
Another thing that I have realised when you have a condition like this is that everything feels like a battle. If you need to see specialists, it’s not just a case of asking your GP – there are certain routes you have to take which can take quite some time. If there is a new treatment you’d like to try, often you have to keep researching to gather the evidence and fight your case. If you get to the point where you need a bespoke wheelchair that costs a fortune, it’s not just a case of telling the NHS that you need one and it will be provided. Instead you have to jump through all the regulations and assessments beforehand, usually for the request to be rejected and so you have to go through another year of paperwork and assessments to get charitable funding. If your condition reaches the point you have to give up work, getting benefits is a whole other nightmare onto itself which led me to a mini break-down and having an anxiety attack every time a brown envelope from the Department of Work and Pensions lands on my doorstep. And these battles go on and on. I might sound a little bitter, but when you’re already exhausted and rundown it can be hard to find the energy to keep fighting these battles, so they become magnified in my head.
Do you feel secure in your life?
Another way in which my life has changed is that I now have to rely on other people or organisations, and sometimes I feel that I could have the rug pulled out from under me at any moment. With all the changes to the welfare state in the UK, I feel almost constant panic that the support I receive could be stopped. The money I receive pays for my life expenses/bills, and treatment the NHS won’t cover, so it’s vital. However, another knock-on effect is that my adapted car is linked to a specific benefit, and the car has a hoist to enable me to travel with my chair. It’s not possible to put the hoist in many cars, and so I’d be limited to unreliable taxis that are bookable days in advance, and have often not turned up and left me stranded in various places many times. The reality is I wouldn’t be able to leave the house much, not even for appointments.
What about the good changes?
It’s not all negative, however. It’s obvious that had I remained healthy, my life would be utterly different, with vastly different goals and focuses. But that’s not how it went, and that’s okay. I may not be in the career I had envisioned, but I’ve done a lot of volunteer work with organisations I wouldn’t have even considered, if I didn’t come to realise how vital their work was. My relationship with my mum has strengthened as she’s supported me over the years with understanding, and is my pillar of strength. My friendships have completely changed – the people I now spend my time with are understanding and caring, and don’t judge me if I have to cancel for the third time in a row. Even where I live – I had to move into accessible accommodation, but it also happens to be the nicest place I’ve ever lived, with a lovely garden I get to enjoy. I also probably wouldn’t have got my cats, who I now adore!
In summary
Life does change when you have a disability, and some aspects will always be harder than others. If you’re interested in following my journey and to see where I go from here, please come and join me at The Chronic Chronicles, or follow me on twitter at @sparkly_place.
Your right life does not change but it does get a little harder. I work with special needs individuals and we try to make things as normal as possible as it makes each day a little easier for them:)
So true Tiffany! Even dealing with my mother’s Alzheimer’s the more normal it feels the better she is. Jade is a wonderful woman who struggles every single day of her life, things that we so often take for granted.
Oh I think it does change, a lot, and get harder too! Obviously it does depend on the disability and how it impacts you of course.
Thanks very much for reading and commenting!
Sorry it should of said changes not does not change. My apologies.
Thanks you for publishing this. It is so helpful for those who are dealing with similar issues to have it all spelled out and have a clearer understanding.
Thank you Alice, Jade has become a good friend to me. we met because of our disabilities but it’s funny it’s not something we ever talk about really other than this article. I hope you stop by her site today as well!
Thanks very much, Alice. I’m glad you found it helpful.
This description is so helpful. Thanks, Rena, for hosting her on your blog.
Thank you Carol and I hope you check out her site as well. I also hope that you stop back here on Monday Carol because I have a bit of a surprise in store for you.
Thanks so much, Carol. I appreciate the feedback!
Wow, this is very interesting and heart breaking. I hate that you are having to deal with this. Thank you for sharing your experience and giving us an understanding of what EDS is.
Thanks Aimee I hope you will take the time out to visit her site as well. She has so many articles about this dreadful disease.
Thanks Aimer I hope you will check out her site Chronic Chronicles!
Thanks so much, Aimee, and I’m really glad you found out more about EDS.
I knew nothing about this condition before and hope that you will find relief as science and medicine progress.
Thanks Carol, Jade is a wonderful young lady with so much of her life in front of her. I so hope that you are right!
Thanks so much! There is pretty much no research in this area, but I have my fingers crossed for the future.
EDS is a difficult disability to manage. One has to have a positive conviction even during the times that the illness is taking its toll on the body. They also need a lot of support to manage their condition.
Thanks Franc! I hope you will visit her site Chronic Chronicles!
It really is, and sadly the management is non-existent for me, anyway. It sounds like you know about, or have the condition, so I’m sure you have your own thoughts!
Thanks for your comments.
Wow – I have never heard of this before. Thank you for introducing me to this. Keep positive <3
Thank you! I’m so glad more people have read about the condition now.
Just a little note, I live in the same town as Ed Sheeran’s mother, she makes jewelry as her business. But … she also makes for our local East Anglia Children’s Hospices and for Ehlers Danlos Syndrome. Apparently an American girl told her about her condition and that the Zebra is their logo, much of the items feature black and white or little zebras. I can’t remember her web address off-hand, but I am sure if you google it you will find it. Her name is Imogen.
That’s great, thank you.
The zebra is our awareness symbol because of a phrase taught in medical schools – “When you hear hoofbeats, think horses, not zebras.” So when someone presents with a set of symptoms, the most obvious cause is the answer.
But EDS isn’t the most obvious answer, we’re rare, and so the zebra!
Jade, thank you for the explantion, I had wondered about the origin. I makes sense too.
No problem! I actually make jewellery awareness items myself with the zebra theme, plus ones for other conditions. If anyone is interested it can be found at:
http://sparklyplace.co.uk/products-page/awareness/
Wow, all stuff I had no idea about. Thank you for sharing this.
Thanks, Tessa. I’m really glad more people have found out about the condition from this.
I’ve never heard of this condition, Jade, but you have my admiration! You may not feel like you function normally, but your attitude is much better than some folks who don’t have any health problems at all! Thank you for sharing with us – I’m off to follow you on Twitter!
Thanks so much, Kristen – I really appreciate that and it means a lot.
This was such an informative post. I always appreciate being “educated” and now I clearly understand EDS. What I appreciated even more was that it was not written in the martyr vein. Your attitude is incredible and I applaud you as well as my heart goes out to you. My husband is disabled from a car accident 20 years ago. When the ones we love suffer we want to take their pain away to live in their shoes to understand what they are going through. I am so glad you have a support group around you. I thank you that you will keep us posted.
Thank you so much, Carol. It’s really hard when you’re trying to explain something not to sound negative, or like you’re just complaining, so I really appreciate that feedback.
I read all about what both you and your husband went through, and you have my admiration for coping.
Thanks for commenting!
Thank you for this very informative and educational post. I had no idea that this condition existed, and I feel ashamed to say that.
Don’t feel ashamed, while awareness is slowly spreading, the vast majority of people haven’t heard of it.
However, it’s extremely under-diagnosed, and people are often misdiagnosed with other conditions, so the more people that know about it, the better! Thanks so much for your comment.
I have never heard of this condition. I could not imagine having the muscle spasms all the time just from normal day to day activities. They are so painful.
Thanks, Jennifer. I’m so pleased so many new people have heard about EDS from this post. The more people who are aware, the more people will be diagnosed.
I have never heard of this syndrome. Thank you for writing about it to bring awareness to it.
Thank you so much! I’m glad so many people who haven’t heard of it will now hopefully vaguely recall it for the next time someone mentions it! 🙂
I have an autoimmune disease that causes me to have pain my family cannot see. I have not heard of this syndrome but it looks horrible. Muscle spasms all the time? No thank you!
Thanks for your comment, Ashley. Sorry you have to deal with chronic pain too.
I have a small disability resulting from a birth defect that affects my right foot/leg. I can sympathize with the need to plan ahead for certain things due to it…but it is something I’ve learned to live with.
Sorry to hear that, Scott. I’m glad you’ve managed to find some coping methods.
I’m so sorry Rena…I have 3 herniated discs, a pinched nerve and lots of degeneration spreading fast. I’m not quite in a chair – yet, but I know I’m on my way. I’ve made it further then the women in my family tree before me that all had the same outcome. I actually starting blogging/crafting because it was the only thing I can do from bed. So much of your described symptoms I have, some nights I am in so much pain I can’t sleep with sleep aid…and pain meds do nothing for me. I’m your newest follower! Sending happy thoughts your way *virtual hugs*
Thanks very much, Tanya. Sorry for any confusion, but Rena has kindly hosted me for the day, so the post is about the condition I have.
You can find out more about Rena’s condition here: http://wp.me/p3zg8n-nT
I’m so sorry to hear you’re in a similar situation. It is very frustrating, particularly the sleep issues. I did write a post about how many people with disabilities turn to crafting, if you’re interested it’s here: http://wp.me/p3zg8n-hn
Good luck on your journey.
Thank you for sharing, I had never heard of EDS before today. I will make sure I share this with others.
Thanks so much, Catherine. I really appreciate you sharing this – the more people that know about, the less time people will live in misery not knowing what’s wrong with them. So many are undiagnosed, or misdiagnosed.
Thanks for your comment!
Wow, I had never heard of this condition before. Thanks for shedding light on it and it’s good that you can find the positive in it all … mindset can be the biggest part of “the battle”.
No idea how the welfare state in the UK compares to that in the US, but it seems here sometimes like those who truly need help are fighting so hard to get it while those who are using the system have no trouble. Very messed up!!
Thank you, I really appreciate your thoughts.
Ha, well the welfare state in the UK is a whole other post, but in summary – we’ve just become the first country to be reviewed by the UN for disability rights violations. So does that answer the question? Our current government is specifically targeting people with disabilities in both welfare cuts, and propaganda.
I have heard of this condition but didn’t know a lot about it. I understand the looking healthy/feeling lousy though as I have a chronic disorder that has led to my being disabled. People sometimes don’t understand. I hope you are having a good day.
Thanks for taking the time to read more about it! I’m sorry you’re in the same boat.
Yes, it has been a good day today, thank you!
Hmmmmm…. I remember a friend that used to say she was double jointed. I kind of always wanted to be like her… now, I am happy I wasn’t.
No, it’s so not a good thing. The worst thing is people who are hypermobile themselves often don’t realise, and spend years showing their ‘tricks’ off, not realising each time they’re doing it, they’re damaging their connective tissue surrounding the joint.
It is possible to be hypermobile and remain okay, but I wish doctors were trained to keep an eye on it.
I had no knowledge of this before. Thanks for sharing your story. It’s fairly eye opening that hypermobility can be an underlying problem for something else. I had no idea!
Thank you, and I’m glad so many new people have now read about it today!
I had no idea about that. Thanks for sharing.
Thanks so much for commenting!
Thank you for sharing, I had never heard of EDS before today. I will make sure I share this great info.
Thanks, that would be great!
Thanks for sharing this.. i never knew about this. This is something to look out for in the future.
Please do! So many people are undiagnosed, or misdiagnosed. The more people that know about it, the better.
There are so many illnesses out there that can take a toll on you and yet you look otherwise healthy. It helps to get regular screenings. Thanks for sharing this article as I had no idea about this
That’s very true, Veronica. It’s unlikely a general screening would pick this up – which is why if people have long-term chronic pain and hypermobility, they need to bring this up themselves.
Thanks for your comment!
I have never heard of this before but your right life doesn’t end it just has to be seen through different eyes.
Thanks so much for reading and commenting.
This sounds so debilitating, but you seem to have great spirits and have found things that make you happy and that is all that matters. Most people take for granted walking into the next room to do something or driving to the store for milk when you need some. Its not that easy for many. Thanks for the reminder to look at the world through other people’s eyes occasionally.
Thank you, that’s so true. On my darkest days when someone says they can’t be bothered to get something, or don’t want to get up, I want to tell them they’re lucky. But it’s all so relative – I can still walk a little, and many others can’t, so I shouldn’t think like that.
Thanks for your comment.
I have never heard of this, but what great information. Wow. At least I will know about it if something happens.
Thanks, Amber. It’s certainly something to suggest to someone with long-term chronic pain and hypermobile joints.
Wow, I had been unaware of EDS and its effects til now. It’s amazing that you have been able to accentuate the positives. State of mind and attitude are great ways to combat these challenges.
Thank you so much for your comment, Cory. I appreciate it.
Thanks so much for sharing your story and raising awareness of this. Sending out lots of good thoughts to you.
Thanks very much, Lois. I appreciate your thoughts.
Thank you Jade and Rena, for sharing this with us. I hadn’t heard of this disability before. I’m so sorry for what you have gone through, but your positive attitude shines through in your writing! Will send positive thoughts and wishes your way.
Thank you, Lana, I appreciate that!
I learned something new today, thanks for sharing. This disease is something to be feared of, I felt so much relief when I read it is genetic. Is there any chance we can acquire this disease?
It’s not something that can be acquired, but it is something that can be triggered later in life. So it was always there, but perhaps became worse later on. However, there are always signs – long-term chronic pain, hypermobile joints, etc.
If you’re interested this post goes a little more into the signs: http://wp.me/p3zg8n-kS
Thanks so much for the comment!
I’m super impressed with how you overcome your disabilities and stay so positive!
Thank you, I appreciate it!
Sounds like a difficult disability to manage. You seem to do it with a lot of positive thinking and forethought though.
Thank you, Elizabeth. That’s really nice of you to say.
Thanks so much, I appreciate your thoughts.
I wasn’t aware of this disability before today. Thank you for sharing your story. I know where you are coming from, having people judge you. I look healthy to the average person, but have a condition that makes me very sick, very quickly. People just don’t understand why I can’t do some of the things they do, and it upsets them.
I’m sorry to hear that, Theresa. It is very difficult for people to understand.
I love that you are focusing on the positives!
Thanks, Marcia, and thanks for commenting!
Thanks for this. It was really informative and interesting and certainly gave me more of an idea what your life is like to live with this disability. Lots of changes over the years. I can not even imagine. I can understand why you don’t feel secure and that must be very difficult to deal with.
Thanks for your comment, Pam. I’m so pleased you found it interesting.
I had never heard of this before. Thank you for the educational post, however I am so sorry you are living with this. I hope doctors can provide better treatments in the very near future!
Thanks so much, Diana. I really hope research improves and treatments become available too.
Wow! I had no idea all of this happened. Thanks for educating me on it a little more!
Thanks for reading and commenting, Britney.
It sounds like a terrible condition. this is the first I’ve heard of it.
Thanks for reading and commenting, John.
Thanks for sharing your story. I had never heard of Ehlers-Danlos Syndrome before.
Thanks so much for your comment, Bonnie! I’m so glad EDS has been introduced to new people.
I had no idea hyper-mobility could cause so many problems. This was very educational!
Yes, it very much can be. But not always – which is why it’s difficult, as many health-care professionals don’t realise it’s a sign of an underlying condition.
I like that you have enriched the things you like doing on your own, so that you’re still spending time doing things you enjoy when you haven’t planned a trip out. Thank you for sharing your story on a guest post!
Thanks so much for your comment, Rosey!
I admire you for your courage and strength for even being able to move on. I have a lot of problems now myself and the think that gets me the most is not being able to do what I had thought before just the simple house cleaning etc. I had to stop working back in 2001 when I could not do it anymore. That alone almost killed me inside. Thanks for sharing your story and making aware of Ehlers Danlos Syndrome. 🙂
Thank you so much, Rebecca. It is really hard. I had to stop working a couple of years ago too – and in a lot of ways it was a relief. I was killing myself doing it. But it’s harder now, I wonder what I’m doing with my life, and what others think.
It’s difficult. I think we can be the hardest on ourselves.
Wow I have never heard of this condition before. I maybe it will be something we will cover this semester in nursing school. I want to learn more. Can someone with this condition still have children or would that put to much stress on their bodies?
Honestly, I doubt it will come up at nursing school, but if it does, I’d love to know! It’s seen as so rare, it’s pointless to cover. But it’s not really rare, it’s under-diagnosed.
Maybe you could bring it up if you get a chance? Tell them 95% of people remain undiagnosed or misdiagnosed?
Yes, it’s physically possible to have children. However there are big risks – much higher rates of miscarriage, excessive bleeding, placental abruption and of course because the body naturally becomes more flexible in preparation for the birth – this can causes extreme pain, and things like symphysis pubis dysfunction. It can also trigger the condition for those that had it at a low-level, due to the hormonal changes. Others have reported they never recover from their pregnancies, and suffer for years after.
However, to me the biggest risk is to the child. It’s a heritable condition – passed on by just one parent. It’s supposed to be a 50% chance, however it seems to me to be quite rare for the child not to inherit it.
For this reason, I’ve decided I shouldn’t have children. However, many do take the risk and decide it’s worth it either way.
Wow so much great information here. Thank you for sharing this. I will bring this up in my adult health class and see if the instructors have had any patients with EDS.
Yes, I agree that there are so many conditions that no one would know you have unless they ask. It is a good reminder that we never really know what is going on with another person. My kids have PKU and no one would know or understand unless they have someone in their family with it. They look no different from other kids.
Thanks for your comment. It’s so true, it’s very difficult living with an invisible disability. And when it’s a condition people haven’t heard of, they often don’t grasp the severity of it.
Blogs like this are such a great thing for newly diagnosed people, looking for support. It is very encouraging to read about real people dealing with it in real life. It seems like you have a great attitude about, very inspiring.
Thanks, Melissa! I would love my blog to be a resource for people new to the condition.
Thanks for you comment!
I have never heard of Ehlers-Danlos Syndrome before. Thank you so much for sharing your insight & knowledge with such a positive attitude. I wish you the very best!
Thanks, Melissa! I’m glad you’ve been introduced to it now. I appreciate your thoughts!
Having Lupus I can understand to a point certain limitations, feeling sick but not looking sick and other daily struggles. I’m so glad that I now know more about Ehlers-Danlos Syndrome, I know someone who has it but she won’t talk about it so i didn’t have much information from the perspective of anyone actually dealing with it. Thank you for sharing a bit of your life!
Thanks for your comment, Mina, and I’m sorry you understand it all to well.
Having a chronic illness and having to depend on others would be very difficult for me. When you’re depending on others to get you here and there and making sure their on time, so your on time, would really stress me out. Living a life time of struggling everyday to do everything done you can and then feeling bad because you couldn’t do more is heartbreaking to me. Praying for you to keep plugging on.
Thanks so much for your thoughts, Julie. It is difficult but as there’s no choice, so you have to get on with it.
As a Survivor, I am all to aware of what it is like to live with a chronic medical condition. Most people don’t understand the difficulties that are involved.
I’m sorry to hear you understand too. Thank you so much for your comment.
I had never head of such condition before. I learn quite a bit from reading your post. I love that even with this happening to you, you sound happy.
Thanks so much, Marielle. I’m pleased your learnt about the condition for the first time.
I have not heard of this before. It sounds scary but you have a great attitude.
Thank you, Amanda!
nice to know about this!i have a classmate back in grade school and she can do that on her arms thought she was just super flexible.
Thanks for your comment, Jane. You’re right – she could just be flexible. However the condition can be triggered later on – usually around puberty, or after having children, so it’s always worth being aware of.
I have never heard of this disease before, I am glad to see you are see the world via a different view and determined to come out on top. Bless you and your family.
Thanks so much, Geanine. I’m glad so many people have now heard more about Ehlers-Danlos Syndrome.
Thank you for sharing your story. I wish you the best on your journey with Ehlers Danlos Syndrome.
Thank you, Dawn!
Thank you, Tess! I’m so glad you found it informative.
I had no idea such a syndrome existed. Thanks for such a detailed description!
Thanks so much! I’m glad so many new people have now heard of the condition.
Thank you for sharing your story, Jade! I will definitely visit your blog. And wish you all the best in your life!
Thanks so much, Joanna! It would be great to see you over there.
Never heard of this before, there’s some good information and that picture.. makes my knees hurt. Wish you all the best.
Thanks for your comment! Going into hyper-extension doesn’t usually hurt, but it does cause damage on in the inside that builds up.
But it can look weird, yes!
I’d never heard of this before, so I’m really glad you wrote this post. Your pictures remind me of someone I used to know who had fingers that bent backwards. I really like your positive attitude and your drive to help bring awareness to this topic. Good for you.
Thanks, Erin, I appreciate that!
A lot of people are hypermobile and have no idea what the meaning behind it is. (Although they can have no issues from it also!)>
Thank you so much!
Interesting guest post. I know a couple of people with children who have hypermobility, so it helps knowing what kind of issues they might encounter going forward.
Thank you for your feedback, Emma. I hope they’re part of the group that have no problems though.
Thank you for bringing awareness for this condition! I had no idea it existed!
I’m glad you now do! Thanks for commenting. 🙂
Its heart warming to see that you have come to terms with your life despite so many hardships you face, you have come to relish your relationships and contributing in every possible way through various organizations.
John Gatesby recently posted…Do I Have Postural Orthostatic Hypotension Syndrome(POTS)?
You are doing well by sharing your experiences with memorability, it is important for the people to know what a person suffering from hypermobility is going through and those suffering from it get to know more about it.
John Gatesby recently posted…Do I Have Postural Orthostatic Hypotension Syndrome(POTS)?
Thank you so much for commenting.