hEDS

I finally got an official diagnosis. I have the joint hypermobility type of EDS and the hyperadrenergic type of POTS. I also have osteoarthritis and hypoglycemia, as well as #ADHD and possibly high functioning #Autism . I'm learning that most of my issues are related and many are caused by the #HEDS .
At times, I get really overwhelmed and sad and don't want to get out of bed. But, I have to. I have a large family that depends on me. They and my faith are what keeps me going.
What keeps you going?
#EhlersDanlosSyndrome #POTS #Fibromyalgia

Once again, my GP doesn’t know what’s wrong with me and my extensive Google searches haven’t come up with anything either. For the past year, I’ve been randomly getting chills but most often they happen when I’m about to go to bed or sit down. It doesn’t seem to matter how warm the room is or the bedding, it still hits. It even happened in summer which was a hot one. So I layer up and eventually fall asleep only to wake up sweating once my body has normalised. My doctor has done all the usual tests and literally given up. While I hope nobody else is going through this because it is so uncomfortable that it’s almost painful, I am really hoping for some answers. Please help me if you can. #chills #Undiagnosed #Fibro #Fibromyalgia #JHS #HEDS #help #question

Hi everyone I have an appt with an allergist in a few weeks, my geneticist said I could have some characteristics of MCAS but left it at that and then an internal med doctor put a referal to see them under allergies . I have no idea what to expect or do or say. I've been compiling all the pictures I've taken of reactions I've had. What else do I need to do ? #HEDS #hypermobileehlers-DanlosSyndrome(hEDS)

Hi Zebras!

Happy New Year. I hope you are all as well as possible!

Our EDS makes it seem like life is NOT structured in our societies for our needs & issues, and everyday living is just harder or not an option-we live differently due to necessity.

I want to share some kernals of wisdom I just got from my latest therapy session, in case it brings you relief too.

I have had a very challenging few months of poor health with little respite(subluxations, POTS, gastric issues, depression & anxiety). It wore my resiliency down, and I’m very quick to cry and wallow at the slightest little failure in a day.

It’s like my bucket is full from dealing with all my hEDS crap (pain, weird body reactions, isolation, loss of employment, lack of social life, less sex) that any extra droplet of hEDS stuff overflows my bucket and the ugly snot crying happens. Crying can be good-great release of tension & grief, but when it’s uncontrolable and many times per week, you feel downright depleted & hopeless. One such droplet was trying KT tape again, then remembering my extra velvety skin means it doesn’t adhere, or it harms my skin, so NOT a tool I can use. Sent me into heaving fits of tears as it was my solution for keeping my knee & ankle stable so I could SLEEP!

While there is PLENTY that completely ruins our lives with this condition, we must put our energy & focus to work FOR us, not let it drag us deeper into depression.

First & foremost, we need to care for ourselves. We need to love, nurture, care, be kind, be gentle and nourish ourselves. Ask what you can do RIGHT NOW, this hour, or today to lift your spirits, restore your energy, lighten your burden, etc. and do it FIRST. Like on an airplane, put your mask on first so you can help others with theirs. Self-care will give us the energy restoration we require to do what MUST be done.

After re-energizing, prioritize your list of MUSTS. What absolutely cannot wait? That is numero uno. Then decide if there is a stripped down version of the task that MUST be done. For example, if dishes need doing, (after self-care), can you handle the ones you will need next, or rinse everything for washing later, or load a few into dishwasher(if you have)? Some things may need to be put on back burner-prioritize & choose to address the most important only. Do ONLY what is possible.

Next, we watch & attune to feelings of being overwhelmed. This is a cue to tell us we are thinking too far into the future. Some thoughts/ examples could be what job can I possible keep & do with my disabilities? How can I do this for years & decades? Will it ever be better? Will I always be in pain? Will it get worse? Statements invilving “never” and “always” are also good flags to notice when getting overburdened. Check in with your thoughts: are you thinking beyond today? It’s too far in future & may bectoo big. Are you thinking beyond this hour? Sonetimes that is too far. I KNOW I can handle the next hour, or an hour at a time, so hourly check works best for me.

If we can recognize this is a waste of energy & harms vs. helps we can choose differently. Taking on all a life with EDS is, is too much for me to fathom. That’s like trying to eat a whole elephant in one sitting. Chunk it out instead. Cancel the thought train to worry and instead ask what do I need today? How can today be the best of the day it is? Right now that is too big for me to digest, so we chunk smaller. What this hour do I NEED? What this hour can I choose mindfully to do for my well-being/life?

I’m struggling with career identity. What CAN I consistently do that generates income? Again, given my current energy status, this is too big right now. I must table this productive thought, and focus on my first priority-restoring energy via self-care. This is the best use of my time this hour/today.

In truth, even able bodied folks can really only tackle today. Do only today, not the future, and do what you NEED for you. Be very nurturing, so loving, kind and gentle with yourself. Energy first, then tasks. Chunk out in smaller bits to manage.

I hope this transmutation from future doom & gloom to mindful focus of energy helps you. It brought me peace to focus on what I CAN do vs. can’t, and to throw out self-pity in exchange for blessing my current hour/day instead.

May you be well, happy, and peaceful.

Gentle hugs!

#HEDS , #overwhelmed , #ican

just wanted to share that I FINALLY figured out a short, not too personal way of answering questions from strangers. I wear a c-collar nearly 24/7, and sometimes use a mobility aid, so I get a lot of strangers asking me “what happened?”. Ive learned that the easiest way for me to answer that is to just say “oh, just faulty genetics.” I sort of laugh it off, and smile (I also use humor as a coping mechanism, but this just works so well… lol!). They aren’t entitled to any answer at all really, but I find this is often enough to end the conversation in a friendly way. Sometimes though (if I’m feeling up to it), it provides space to teach someone new about EDS, which can be really neat!

#EhlersDanlosSyndrome #HEDS #HypermobileTypeEDS #CCI #AAI #Mobilityaid #MightyTogether #StayStrong

Sometimes I say I don’t need people to catch me, because I am friends with the floor. The floor catches me sometimes and laughs at/with me sometimes and sometimes lands a well-meaning punch too hard. I have to be patient with this friend who often shows up unannounced, thinking to surprise me and it will be great fun. When I’m writhing there, if someone is in the room, I know they cannot contain my pain. It hurts me to see them watch me there - someone they love’s body trying to turn itself inside out. They plead, beg and bribe the gods for a way that they can help. There’s not. I dance with the edge of knowing what I can control; where is my power and where isn’t it? But most often able people have not fought this war of attrition, and are not prepared for the blow to the gut knocking all the air from their hearts. Seeing them powerless and unaccustomed to this pain adds the hurt of another too and it weighs so much. But the floor, for all its flaws, is quiet after the initial impact. I scream and it listens.
#fall
#EDS
#AutonomicDysfunction
#Dysautonomia
#HEDS
#PosturalOrthostaticTachycardiaSyndrome
#LivingWithPOTS
#MastCellActivationDisorder

I’ve had back to back health complications (courtesy of my hEDS) the last 2 months: pain, subluxations, rapid gastric emptying, POTS. Last night after another day of disabling dizziness, gastric issues, and brain fog, I fully melted down.
Luckily, my incredible hubby with me for support.

When all seems hopeless, and you can’t see the light, how do you all cope?

Life is so hard with this condition, and once in awhile, it wears me down to this angry, blubbering, hopeless mess. I just wish I could get 3-4 days break from this to recharge.

I know you all “get it”. I’m struggling and so weary right now. Thanks for a safe space to vent.

#HEDS #impossibleliving

Hi all, I’ve come to terms with some of the things I’ve lost from my life due to worsening symptoms from hEDS - no more knitting, no more playing the oboe (devastating), only very limited and careful hiking, that sort of thing. Not easily being able to cook for myself has been too much of a problem. Prepared foods and takeout have too much salt, and my body reacts terribly to salt. I blow up like a balloon. Also I need to avoid peppers and include more whole grains, and I was always a good cook and I miss my yummy food. It’s hard to stand up because the hip I dislocated 20 years ago aches, and my shoulders and hands object to stirring.

My question - are there any hypermobile cooks out there who have found less painful and more possible ways to work in the kitchen? Can you share you tips and tricks please?
#HEDS #kitchenhacks #Cooking