#MyHSDChallenge

[neetpunk]

Day 15 – What I Wish People Knew

What’s one thing the world should understand about EDS and HSD?

I wish more people knew that hEDS isn't the only kind of EDS, there's multiple kinds of Ehlers-Danlos Syndrome. I'm also fairly certain hEDS and HSD are the same exact condition, just with varying levels of symptoms. At least this is what I've come to think after recent studies that have been done.

[diagnosed-weird]

May is right around the corner, and it's also Ehlers-Danlos Syndromes (EDS) & Hypermobility Spectrum Disorders (HSD) Awareness Month!

Join The Ehlers-Danlos Society and raise awareness, visit www.ehlers-danlos.com/may-awareness

(Mention 3 of your friends or more here)

[dravenxivuk]

I’m doing this over on Twitter, so let’s do it here as well...

May is EDS & HSD awareness month. 

Day 1. Meet me 

I'm Draven (she/her), I'm 42, was diagnosed with EDS in 2017 after years of misdiagnosis & 'mystery' symptoms. I live with my Wife & our 2 cats. I game, art, knit & crochet.

2. My EDS 

I have Hypermobile Elhers-Danlos Syndrome. Along with joint hypermobility I also suffer chronic pain, concentration problems, sleep disturbance, fatigue, postural orthostatic tachycardia, migraines & gastrointestinal issues

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 8 Prompt: Movement and Activity

Movement and Activity can be very limited for those with EDS, especially those who have more severe symptoms and comorbidities. You may think of exercising as a run around the block or taking a trip to the gym. Others may think of exercise like going to physical therapy and peddling on a stationary bike slowly walking on a treadmill or working with elastic band. Exercise isn't always something that gets you out of breathe or your heart rate way up. For someone with EDS and some other conditions, exercise can take on a totally different meaning. Exercise can be some movements or positions that those who are healthy take for granted and do effortlessly without thinking twice about.

Exercise for us could be as simple as sitting up for a certain amount of time, remembering to change positions more often so we don't get blood clots, one of my exercises was rocking. Sitting on the couch and rocking back and forth or side to side just to get my bones moving a little bit to try to relieve some of my pain. doing light stretches or putting on AFO leg braces and sitting with our legs straight out on the couch to give them a little stretch to prevent furthering of spasticity I am one in a handful of EDS patients who cannot walk at all and is paralyzed from the waist down.

Though many EDS patients may have exercise plans such as walking to the mailbox and back each day, or bouncing on a balance ball, I do not have that ability do such activities and with my spinal issues which insurance will not cover the repair of it can be extremely dangerous for me to do things like this. For me sometimes it just a matter of lying on the couch on my back and trying to slide my foot up so my knee is bent and the bottom of my foot is flat on the couch with as little use of my hands as I can then extend it out straight again pushing with what little I still have in my legs, using my hands as little as possible to get it back straight out on the couch. I will also try this up by sliding it on the couch and trying to extend it by pressing my leg out, using a little help from my hands as possible to pull it back up which is much harder than doing so lying down. Many who are paralyzed or have paralysis have some movement in their legs, especially with a partial spinal cord injury but the movement usually isn't enough to do much with.

I cannot stand or support my own body weight on my legs but on my good days and in socks or shoes without clingy soles I can sometimes slide my foot back on my footplate if I go over a bump or something and my foot slides forward or off. This too is exercise by using what little I have to the best of my ability. I may not be able to lift my leg or move it well but sometimes I can slide it which is better than nothing. My doctors do not like me doing this anymore due to Osteoporosis however I still occasionally will put my KAFO leg braces on which have locks on them to lock my leg straight so my knee cannot bend and simply stand up in them. My legs cant do much as without them my knees would go out and I would go straight onto the floor but they do allow my body weight to distribute into my legs and my circulatory system to get some practice circulating blood in an upright position.

Another issue with EDS is movement disorders which is something I struggle with, sometimes worse than other times, especially in the evenings and when I have done too much. As mentioned in previous posts, the compression of my spinal cord. With so many nerves going through the spinal cord and brain, putting pressure and stress on those nerves result in them misfiring. I actually had this issue as a kid before we knew what it was but at the time it was only in my hand. My wrist would jerk so my hand, on the side of my thumb would jerk up towards my inner arm.

As an adult sometimes my legs will involuntarily kick or I will go spats so my legs won't bend and will hover several inches in front of my chair with my feet twisting inward and upward. I’ll have full body jerks kind of like what sometimes happens when you have those dreams of falling and your body jerks upon waking up but it will happen several times in a row and then several times in a row a few minutes later where my spine goes very straight then flaccid. I will also have facial ticks or full body ticks where the small muscles in my body will start twitching. When this happens in my GI system and respiratory system, it can get really scary because it can make me vomit, unable to swallow anything, give me blurry vision when my eyes start twitching or make it hard to breathe as I cannot control these smaller muscles. Some light stretches can reduce speciosity and stretch these muscles which doesn't reduce the neurological issues but reduces the muscular responses to those.

Movement and activity plans for someone like me may seem too easy or simple but until I can get a surgery to repair some of my neurological, brain and spine manifestations simple is about as good as it gets. The biggest goal of my movement activities is to prevent further sparsity, blood clots and to try to make it so that my heart and autonomic nervous system don't get to a point of no return if we can ever get my surgery approved or another treatment is found. You use it or you lose it so we are trying to prevent me from loosing any more function without going the other way and decreasing my movement through further damage to my spinal cord. It can be quite the fine line between not enough and too much so maintaining that balance is the current goal when it comes to movement and activity and its play in my daily life.

[liltumgrum]

May is Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month

I have Hypermobility Spectrum Disorder. Although once the diagnostic criteria is updated this year I’m sure that my label will be changed to a type of Ehlers Danlos Syndrome. HSD/EDS are genetic connective tissue disorders. To make the long story short, the part of our body responsible for binding, supporting, protecting, insulating, storing reserve fuel, and transporting substances is flawed. Even just one tiny flaw can cause major problems and comes along with a ton of comorbidity. More information here.

I’m going to try to participate on the social media awareness challenge, but make no promises. It may seem silly, annoying, or just to look for pity, however  this sort of thing is what eventually lead me to find a diagnosis. I would probably be dead if other people hadn’t shared their experiences on social media. Speaking of which, here’s an unfortunately necessary reminder: Yes, we are sick. Yes, we are disabled. Yes, EDS/HSD has and will continue to have a major impact on our lives, but we are just as much people as the rest of you. Don’t mistake our decreased quality of life and health for the “quality” of us as people. And please, please, please try not to use us as an excuse to belittle your our experiences and pain. 

Asks are open for any questions. Don’t worry, you’d be hard pressed to find a topic that I’m not willing to talk about. :)

Also, just gonna plop this here->

[stacyspoonley]

#bippityboppityboo @nsmobility RAMP FINISHED! I can even get myself up most of the way with my manual chair so my transport drivers don't have to worry #myEDSchallenge #myHSDchallenge 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿🦓 #COVID #COVID19 #CORONAVIRUS #DONATE #zebrastrong #spoonie #togetherwedazzle #riseup #adapt #ableism #fragilebutunbreakable #ZEBRAFASHION #primaryimmunodeficiency #sewing #DisabledJoy #keepmovingforward #disability #mycrazylife #invisibledisability #lgbt #chronicillness #raredisease #TogetherAtHome #HealthyAtHome #stayhome #mask #plasma 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ (at Lake Ronkonkoma, New York) https://www.instagram.com/p/CAt4MxpAr7c/?igshid=vif2twqymije

[varadasharma]

EDS/HSD Instagram Hop Details + #UseYourCraftStash - Digi Stamps

EDS/HSD Instagram Hop Details + #UseYourCraftStash – Digi Stamps

Hi friends, today I am feeling so honored to be part of a very special event! My Instagram friend (and a crafter I deeply admire!) Natasha Davies is having an Instagram hop for EDS/HSD awareness. You can check out her blog post here. She has also set up a Just Giving linkthat directs funds directly to the EDS.org for anyone that would like to donate. There are so many talented crafters sharing…

[unwanted-life-me]

EDS And HSD: Why Awareness Is Important

EDS And HSD: Why Awareness Is Important It's Ehler-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month so this article will shed light on these conditions #MyEDSChallenge #MyHSDChallenge #ActsofAwarenessChallenge #Blog #Read

While promoting my Ko-Fi page after I saw a prompt to do so on Twitter in a Ko-Fi thread, I randomly came across @LagerdahlPhoto who told me it was Ehler-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. I’d only heard of the latter, so I asked if @LagerdahlPhoto could tell me a bit more about EDS, which they were only too happy to do. After reading the information…

[zebra-warrior]

Would you like to close off EDS Awareness month with a bang? Have some spare change? Wanna donate to an underdog. Please consider this month or any month making a donation to the Ehlers Danlos Society to help with research, education, and awareness for Ehlers Danlos Syndrome. A condition that is incredibly complex yet only a small amount is known about it. Donate here or at The Ehlers Danlos Societys website at ehlers-danlos.com

#myEDSchallenge #myHSDchallenge

[neetpunk]

Day 6 – Life Hacks

What tips & tricks help you manage daily life?

Things that I've found helpful so far:

Switching from orthopedic shoes to barefoot shoes. I really started to hate my orthopedic boots towards the end, my feet felt too restrained and I couldn't do what my physical therapist told me to do in the boots, which is walk with my feet tilted more inwards. Now that I wear barefoot shoes I can walk with my feet tilted in much easier.

Getting a cross sitting chair. I got one of those chairs meant for sitting criss cross applesauce in, so comfortable. It's so wide and when I sit with my feet on the floor there's enough room for my kitty to sit next to me :)

Adding accessories to my mobility aids. I love adding little things to my mobility aids to make them more useful. Cup holders, bags, hooks, lights, anything to make them more useful. I get lots of compliments from people on my mobility aids because of how I decorate them and how I add such useful stuff to them. A lot of older women tell me they love my cup holder and bag on my crutches and they need a cup holder for their walker. I love bonding with elderly people over mobility aids, I love old people.

Setting up 'safe zones' in my house to fall into. I fall down a lot, like a lot. It's why I use mobility aids, mainly. When I'm at my house I don't really use any mobility aids because my cane is too hard on my body, and I can't use my crutches up and down the stairs. So instead I have apartment set up in a way I have safe areas to fall into so I don't get hurt.

[neetpunk]

Day 14 – A Conversation That Changed My Life

A doctor, a friend, or even a stranger—share a moment where someone’s words made a real difference in your journey.

One of my physical therapists really validated my concerns I've been having and told me she had no idea how I've gone so long without my doctors knowing what's wrong with me. I keep saying my ribs are out of place and my doctors tell me that's not true after feeling my ribs. She felt and looked at my ribs and told me it's pretty obvious I have slipping rib syndrome. I finally felt like someone in the medical field wasn't treating me like I'm crazy and hysterical and delusional.

[neetpunk]

Day 13 – The Symptoms That Were Overlooked

Looking back, what signs were brushed off before realizing they were part of your condition?

I really don't get know how people could see my limbs popping out of place all the time and start to wonder what was causing it. They just told me I was sitting and standing incorrectly and if I fix that I'll get better. Hasn't helped.

[neetpunk]

Day 11 – Small Wins Matter

What’s something you’ve accomplished despite your EDS or HSD that you’re proud of?

Since I've gotten my rollator I've been much more active lately and I'm really proud of that, I've struggled for years to get out of the house more and now I finally can that I have a rollator. It's the best mobility I've bought, by far.

[neetpunk]

Day 10 – The Health Professional Who Listened

Give a shoutout to a healthcare professional who helped you.

This is a stretch of the term healthcare professional imo but I had a physical therapist that really listened to my concerns and validated me that I wasn't crazy for the things I felt, and that she can feel and see the problems I keep having with my body. She gave me a breathing exercise that's really helped in so many ways, nobody ever taught me the "right" way to breathe until then.

[neetpunk]

Day 9 – My Most Challenging Symptom

What impacts you the most?

I'm honestly so sick on the muscle spasms, they affect me way more often than subluxating or dislocating my joints. Everyday my muscles are just freaking out and hurt so bad. It feels like nothing really helps.

[neetpunk]

Day 8 – The Reality of EDS and HSD

You may struggle with pain, fatigue, or many other symptoms due to EDS or HSD – What do your symptoms really feel like?

Uhhh I feel tight and tense and in pain a lot. I'm tired most of the time. I always feel like I've slept incredibly wrong and there's nothing that fixes it. My muscles are always stiff now, no matter how much I massage them.