#jointhypermobility

[chief-rumbly-noises]

So on Monday just past it marked 4 months since I’ve drank irn-bru . This sounds ridiculous and not like a big deal but I’ve switched it for water and the difference it’s made is amazing. I used to drink around 2 litres of fizzy juice a day and drinking water instead has helped with my chronic fatigue, slightly with my hyper mobility , helped with my constant black under eyes and I feel better in general . Obviously I’ll always have my health problems but making little changes make every day easier ☺️

[hmsacharity]

HMSA Work In Action; Hypermobility Spectrum Disorder Well….yesterday a very distressed mum called the HMSA for support and this is what she told us. Her 14 years old daughter had been regularly dislocating her elbows and right knee without much trauma, for a couple of years since puberty. Now Annie was scared of going to school in case someone bumped into her and caused another dislocation and she was also embarrassed of being in her PE kit as she was covered in bruises with no recollection of their cause. Her mum listened to Annie crying with persistent pain and watched her 14 year old daughter sleep on the sofa, exhausted with persistent fatigue. Over the last six months her daughter was suffering from gastrointestinal symptoms, feeling constantly sick and reluctant to eat as it caused tummy pain. To make things worse she had chronic constipation and was suffering from an irritable bladder leading to incontinence. Every time she stood up Annie felt exhausted and faint. She suffered from palpitations and an inability to regulate her temperature. Annie was previously a very popular and a fantastic gymnast. She was a typical teenage girl for intents and purposes. But now Annie’s friends had disappeared and the local education authority were concerned about her attendance at school. Annie was depressed, isolated, living with persistent pain and a host of symptoms which her GP didn’t know what to do about. Annie’s Mum did some research and realised that she may have a one of the hypermobility syndromes and called us for advice and support. This is a typical case of onset in teenagers with regards to some of the hypermobility syndromes. Please help us to support Annie and her mum in getting the right information, and the right services, to improve her quality of life and to start living it again! Just Text 70070 followed by HMSA13 £5 or an amount of your choice. Don’t forget the space between 13 and the pound sign. Thank you for reading. #Hypermobility #HypermobilitySyndrome #Ehlersdanlos #Ehlersdanlossyndrome #JointHypermobility #JointHypermobilitySyndrome #sticklers #Marfan #OI #PXE #Charity #Donation #HypermobilitySpectrumDisorder #HSD

[thedeafzebra]

While using my wheelchair has come naturally, getting used to how I look in my chair is going to take some time. #chronicallyill365 #ehlersdanlossyndrome #chronicpain #jointhypermobility #jointinstability #hipbursitis #fibromyalgia #wheelchair #tilite #tilitewheelchair #manualwheelchair https://www.instagram.com/p/Bq3FBIWnVrQ/?utm_source=ig_tumblr_share&igshid=157uoyzk5i3yf

[thedeafzebra]

#chronicallyill365 Day 263: I looked really cute today. I put on one of my favorite dresses, my hair almost cooperated, and I put on my Stop Blushing Vial color. Putting a little more effort into myself definitely helped my mood. What you don't see is the searing pain I'm in, that I didn't get much sleep, or that I felt like crying. I found out that there's a fracture in my left hip. I don't know how it happened, but I've been gimping around with a fractured hip for the past 3ish months. I didn't see my doctor sooner about it because I have chronic pain. If I went to her every time something hurt, I'd never be able to leave her office. Anyways, we're scheduling an MRI to get a better look at it and then we'll go from there. I'm just frustrated. This pain is bad. Its been bad. And I really don't know if will ever go away. #ehlersdanlossyndrome #jointhypermobility #jointinstability #hipfracture #fracturedhip #fibromyalgia #chronicpain #perfectlyposh #teamposhtopia #vial #vialliquidlipstick #stopblushing #liquidlipstick https://www.instagram.com/p/Bn94FKtgNEm/?utm_source=ig_tumblr_share&igshid=h4v02ane4da3

[thedeafzebra]

Lately, because of my wheelchair, I have been feeling strong, determined, and empowered. I've also been incredibly inspired by every @rollettes_la member, @erinunleashes, @jacquelineboxx, @chroniczebra and so many other badass disabled ladies that are doing stuff in their wheelchairs. Which is why I've decided to start pole dancing again. I didn't get far at all the first time I tried, though, I was undiagnosed and very weak physically. Now, my upper body strength is definitely improving, and with some more time, I think will improve even more. I'm probably not going to start until next summer since I do need to work on my body and save up the money. When I see my PCP in a couple weeks, I'm going to see what we can do to make sure I can do it safely. More physical therapy? More body bracing? What kind of recovery should I keep in mind after classes...heat? Ice? Stretching? With Ehlers Danlos Syndrome, anything can happen, and anything can be dangerous for my body. But, I want to do this. And, I'm choosing pole dancing because I like being able to have a prop. I don't want to dance with another person, I don't want to dance with nothing...I like that the pole gives me focus. How is this all going to play out? Who knows. Is this a good idea? Eh, probably not. Am I going all in? Yup! #ehlersdanlossyndrome #jointhypermobility #jointinstability #fibromyalgia #chronicfatiguesyndrome #vasovagalsyncope #gastroparesis #interstitialcystitis #chronicallyill #disabled #poledancing #beboundless https://www.instagram.com/p/BnCc_8vg2vx/?utm_source=ig_tumblr_share&igshid=cvdn42chok0f

[thedeafzebra]

It's a common misconception that wheelchair users are "wheelchair bound". While I am an #ambulatorywheelchairuser, I know that many people that use a chair during all waking hours don't use that term either. My wheelchair is many things for me. It's a mobility aid, it's my legs, it's part of my body. With my wheelchair, I am free. I am boundless. Today was my second time wheeling myself about 6 miles. I cut 15 minutes off my time. And I can feel myself getting stronger each time. #ehlersdanlossyndrome #jointhypermobility #jointinstability #chronicfatiguesyndrome #fibromyalgia #chronicpain #disabled #wheelchair #tilite #tilitewheelchair #beboundless https://www.instagram.com/p/Bm6ZRahA5uA/?utm_source=ig_tumblr_share&igshid=6omlh7hwx56q

[thedeafzebra]

Okay, so I'm not a fan of this picture, but up it's going anyways. I rolled 2 miles in my chair tonight. I was able to go further using my chair than I ever had walking this trail. My goal is to make it to the end, though it's going to take some time to build up the endurance my arms need to do it. And now, I can tell you how I got my chair... My insurance denied my chair, the one my DME and I created and was ready to send to TiLite to actually be made. But, the DME still had the demo chair I had gotten to play around in, and it fits me unbelievably well. So my DME decided to call up TiLite and ask if they could sell me the demo chair. They said yes! Then came how was I going to come up with the money for it. Saving up? Crowdfunding? Getting a loan? I didn't know. My sister was going to crowdfund for me so that I didn't have to worry about anything. But, my incredibly generous and loving uncle had set some money aside for me a few years ago to use if I ever needed anything medical wise, we had forgotten about it until a couple days after. I got the demo chair offer. It just...wow. Things worked out. The DME wasn't supposed to still have that chair, it shouldn't have fit me almost exactly, then remembering the money from my uncle. It was meant to be, I'm sure of it! It's like the perfect storm of awesome happened! I am SO EXCITED! I have already gained so much independence, its incredible! #ehlersdanlossyndrome #jointhypermobility #jointinstability #fibromyalgia #chronicfatiguesyndrome #vasovagalsyncope #chronicpain #heatintolerance #wheelchair #tilite #tilitewheelchair https://www.instagram.com/p/BmUeruRgRyk/?utm_source=ig_tumblr_share&igshid=be9cioeozbof

[thedeafzebra]

#chronicallyill365 Day 171: I don't get restful sleep anymore. And it takes me forever to fall asleep. I used to be able to get into a super comfy position, on my stomach with my arms around a pillow, and fall asleep, but I can't even get in that position anymore. I toss and turn, never comfortable in one position for more than a few minutes. When I have to reposition myself while sleeping, I actually wake up to do it. And it's not as simple as just rolling over. I can't do that either. It's a process just to change positions. When I had my sleep study earlier this year, the tech said he's never seen someone move around in their sleep like I do, and he's been doing this for 30 years. I can't get comfortable enough, and I don't know what to do to help this. #ehlersdanlossyndrome #jointhypermobility #jointinstability #chronicpain #sleep