What is EDS like on MY Body? |
May is Ehlers-Danlos Syndrome (EDS) Awareness Month. I like to try and make a video each year for this, and this year I came across a tag called This is My EDS by Annie Elainey. I've used Annie's words to describe this tag below (under the hashtag). I really hope it helps to hear how EDS affects me. And if you fancy doing the tag yourself, please tag me and link back to Annie.
Annie's Channel - / @theannieelainey
Annie's Part 1 video - • What EDS is like on MY...
Zebra Sweatshirt - www.sugarhillbrighton.com/pro...
If you have any questions or want to see any other videos, please do let me know. And keep your eyes peeled for Parts 2 and 3 later this month!
#ThisIsMyEDS Tag
For EDS Awareness Month I’d like to try and uplift the DIVERSITY of EDS and how it impacts our lives as individuals. After having a doctor say, “I know someone else with EDS and THEY don’t use a wheelchair!” I think that our individual narratives need to be uplifted. EDS manifests itself on a wide spectrum and our symptoms can be fluid as well.
You can answer these questions on a blog but I really conjured them up with video series format (in three parts, to be released throughout the month) in mind. Feel free to exclude any questions that you feel don’t apply to you or you are not comfortable answering and feel free to add anything you’d like to discuss. The goal is to have them start to go up on May 1st or whenever spoons allow.
Questions for this video:
PART 1: WHAT IS EDS IS LIKE ON MY BODY #ThisIsMyEDS
Introduce yourself: name, pronoun(s), and EDS type.
First things, first, in one word, how are you feeling today?
For those who don’t know, can you explain EDS [medically] in a sentence?
What’s your favorite analogy for how EDS feels? Or what EDS is like?
What are your symptoms and comorbid illnesses/conditions?
Here are a few examples: Chronic Pain, Joint Pain, Muscle Pain, Hypermobility, Lax and fragile joints, Frequent dislocations and subluxations, Easily Bruise, Stretchy Skin, Chronic Fatigue, Chronic Migranes, Chiari Malformation, POTS, Dysautonomia, Gastroparesis, Sleep Disorders, Seizure Disorder, Anxiety, Depression, Bipolar Disorder, Lower Vision, Hearing Loss, Pulmonary Issues, Cardiovascular Issues, Cognitive Impairments: Difficulty concentrating, poor memory, Irregular body temperature, Limited ability to walk, Limited ability in upper body, Physical disabilities, Osteoporosis, Arthritis, Reproductive Issues, Aneurysm, Degenerative Disk Disease, SI Joint Disease, ANYTHING ELSE EVEN IF I DIDN’T INCLUDE
How does EDS impact your daily life?
How often are you in the hospital? What physical disabilities impact your daily life? Devices you use for your survival? Do you work? Are you often on bed rest? How often are you injured? How do you try to prevent injuries (accessibility needs)? How does it impact you emotionally, your mental health?
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I'd love to hear your comments and will reply to as many as I can :)
Пікірлер: 9
Thankyou for doing this video when I was younger they thought I had eds. But I have now been diagnosed with hypermobility type three which causes me a lot of pain (daily pain meds sometime I need to use a wheelchair). Thankyou for doing this video for awareness because no body at school seems to understand so if more people are sharing these videos we can get more of an understanding. 💕💕💕
@JennyCole1988
5 жыл бұрын
Thank you for watching Rebecca. I'm sorry to hear you are struggling with your health too, and am really sorry to hear that no-one at your school seems to understand. I hope that by more people talking about it and by making videos, that it will help more people to understand and take us seriously. I hope you've got some good friends or family around you to support you xx
@Rebecca-fz7tp
5 жыл бұрын
Jenny Cole I am so luck to have my mum and my friends support and I to believe that with more education people will be able to understand this condition more and more xx
Great video Jenny, thank you xxxxxxx
@JennyCole1988
5 жыл бұрын
Thank you Penny I'm glad you liked it xx
Just stumbled across your channel and find you very interesting to listen to. I suspect I have hEDS, and I am waiting for a referral to a rheumatologist with suspected rheumatoid arthritis and I will ask them about hEDS as I am struggling to get anyone to believe me (not helped by the fact I only found out about it just before Lockdown so haven't had any in person appointments). I feel like a lot of my symptoms/potential co-morbids are similar to yours. Have you done a video about your diagnosis story? hEDS, MCAS, PoTS etc would be interesting to hear how it went, if you don't mind sharing. I was diagnosed with an autoimmune disease in January after a decade of being gaslight by doctors. This has caused my mental health to really suffer and I now have chronic pain and fatigue. I am 25 and feel 125. I'm trying to get diagnosed one way or another since swapping gp's and now having doctors that listen and try to help. Hope you are keeping well, I am going through a load of your videos and really enjoying them, thank you.
@JennyCole1988
3 жыл бұрын
Hi Rachel - Thank you for your comment. Sorry this reply is so late - I've been struggling to keep on top of things with my health, but am getting there slowly! Thank you for watching - I'm so glad you find my videos interesting! Sorry to hear you're struggling to get people to believe you about your hEDS. Lockdowns have definitely made getting a diagnosis and help harder, so I really hope you've been able to get some help since you wrote your comment. I've done a few videos that talk a bit about my diagnosis, although not one that focuses on the whole story, so I will add that to my list of things to film! For now though, you might find the following helpful: - Diagnosis with EDS - kzread.info/dash/bejne/qn2kp9CvmrGXcqg.html - Diagnosis and Symptoms - kzread.info/dash/bejne/p46cp8lviLLfZ7Q.html - My Gastroparesis Story - kzread.info/dash/bejne/o52rmqeJZarAl8o.html I'm so glad you finally got a diagnosis after so much gaslighting. It's horrible the things we have to go through just to get a simple diagnosis. I'm not surprised it's affected your mental health - I found my mental health really suffered due to not being believed by medical staff. I hope you're getting a bit more support now. Thank you for watching my videos - do let me know if there are any other topics you would like me to cover xx