Living With Ehlers-Danlos Syndrome Requires Problem-solving
Unusually cold temperatures posed a big problem for this columnist
I hope everyone had a restful holiday and New Year’s, however you choose to celebrate! Mine didn’t turn out as I had planned. My Ehlers-Danlos syndrome (EDS) threw in some challenges, but thankfully, a little ingenuity managed to help me figure out a workaround.
Like most of the country, right around Christmastime, my home state of Virginia was hammered with extremely cold temperatures. The owner of the private horse farm where I live was out of town visiting family for the holidays, so I was alone. It usually wouldn’t be an issue, because I take care of the farm all the time — it’s why I live there! But this time, the subzero temperatures and wind chill created a mess.
To highlight how extreme the temperatures were, we broke or tied two record low temperatures from the 1800s!
Unlike farms that operate in typically cold areas, we don’t have insulated pipes, hoses, or troughs that are needed to prevent freezing. For me, it meant that I had a farm full of horses and no way to easily get fresh water to them.
Despite careful planning and draining hoses, the temperatures were just too cold. Even a little bit of water left in a hose would freeze, making it unusable. And because of a recent issue with the well pump at the barn, we’ve been running water from the house pump, which is much farther away from the horses’ pastures. I had to figure out how to get fresh water to more than 20 horses.
With Ehlers-Danlos syndrome, there was no way I could physically carry that much water. A five-gallon bucket of water weighs about 40 pounds, and each trough holds 100 gallons. My damaged right shoulder, which can easily have a subluxation or be dislocated, doesn’t allow me to carry very much.
I also have a tendency to become extra sore if my muscles get cold. Additionally, the pitted, frozen ground and the chances of me rolling my ankle meant I had a real problem. Clearly, I needed to come up with a creative plan quickly.
What to do?
I couldn’t find enough viable hose to reach the barn, and the temperatures were so cold that none of my equipment would start. The tractor’s diesel engine was too cold, and the choke on the Gator (a small, all-purpose vehicle) was frozen. I managed to get the farm truck started, so that’s what I had to work with to find a solution.
I finally decided to try to start a siphon. I figured that if I could get an extra water trough in the truck bed and fill it at the house, it would be high enough to siphon down into a trough on the ground without too much trouble. Even better, I wouldn’t have to physically move any water and stress my EDS.
It took several attempts — and melting a short section of hose in the bathtub — to get things going, but finally, success! As long as I was careful while walking on the frozen, uneven ground and aware not to slip on any spilled water that had frozen I would be OK.
By the time I finished getting all the troughs full, my entire body was sore from climbing in and out of the truck and hiking over the frozen ground. But all of the animals were taken care of, and while I was sore and exhausted, I managed to avoid setting off another full-on pain flare.
While I hope we don’t wind up with another cold spell like that anytime soon, at least I know a solution if I ever run into the same problem again!
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
About the Author
Sandrine
I just want to say that I really like your articles. My 18y/o daughter was diagnosed with Hypermobile EDS over a year ago (we are in the UK) and all your articles ring true. I send her links to most of your articles to show her she's not on her own!
She get the subluxations, the pains, the flare up, the stomach problems including sickness.... well, pretty much everything you write about!
So thank you for the articles! And well done on the problem-solving.
Sandrine
Maura Tantillo
I am so proud of your ingenuity! And your perseverance. I too have EDS Hypermobility with joint and muscle pain, fatigue, and issues of balance on unsteady ground. But I've made it through 70 years so far and I'm not giving up. I don't know if I could have done what you bravely accomplished when I was your age. Love of the animals dependent on you was surely a driving force. Please take some pride in what you did, and please continue to write your interesting articles!
Mary Beth Lang
After 70 years, I was just diagnosed with POTS and EDS. I would still be undiagnosed if my college aged grad student granddaughter hadn't been telling me about her diagnosis.
I had no idea this was a "thing." So all of my rolled and broken ankles meant something? That my shoulders could dislocate at will and with no pain? And that both of my thumbs are now looking at surgery in a few months to keep them stable?
I have been vomiting after every bath for years, and many times after standing for what I knew was too long "for me", but the doctors always said everyone is built differently. Even after my granddauter's diagnosis, they didn't take me seriously until I went to the hospital for a chest CT and they freaked when my BP was 60/40, and my tach was in the clouds. I lost my hearing in my left ear several years ago, and my vision is rapidly deteriorating. I'm positive this is my last drivers license. Am alo showing the early signs of macular degeneration, and an eyelid lift resulted in vertical double vision. This is just ridiculous.
Cheryl Blake
You're me, except I'm 68. I was diagnosed with EDS and POTS at age 50. I have had vitreous detachments in both eyes and keratoconus has taken my ability to drive. EDS took my hearing. I have moderate-to-severe bilateral sensorineural hearing loss. My teeth are false. The dislocations, miscarriages, premature babies. EDS is responsible for all of these things. Gotta just keep going. I have a brace for literally everything. The DME aisle has stuff I use. Everything is a tool to get something done. We have to be smart and innovative in order to do things.
Barbara M Bellehumeur
Karen,
I have VEDS. I am 70 yoa, I can relate to your emergency with the horses. Nice thinking and action.
Since there are 20 horses might 20-gallon jugs kept ready inside be of help? or 40? I break all tasks down whenever possible by weight. We have a 5lb lifting restriction.
I garden and collect rainwater in large tanks that have hoses and faucets. If the hose does not reach the area, I have to be ready with containers I can lift full of water. I use black insulated tanks also that warm up fast. This is far different from 20 thirsty horses on a sub zero day I know.
Perhaps black containers full of fresh water outside near the horses than can begin to melt as the temps rise, Something solar collecting sun energy near the water supply? A solar cistern?
Creativity is another bonus for those with EDS.
Thanks for your articles.
Deb Russell
Hi! This is the first time reading your article and I agree, we have to be problem solvers!
By the way I am 57 yo, disabled from hEDS and I fall, or roll my ankles, broke 1 badly (foot on backwards) and got shin splints every time I ran 3 miles, which I did regularly, and I just thought that the leg pain was "normal" for everyone! I lived in a very rural area when I used to run whichnis now over 20 yrs ago.
One of my tricks, as my spine is particularly screwed up, is to put dirty laundry in a king sized pillow case and drag it to the Laundry downstairs as I was told to not lift them any more.
I now have my service dog drag the full pillow cases and he thinks it is just the best game! 🤣
Hope my idea helps others!
Big fuzzy Hugs,
Deb
Rosa
I have an issue with my vision. I have a lot of headaches and problems with light. I have trouble tracking and I need to be working in the dark, otherwise I get terrible headaches and can not open my eyes, for fear of tracking movement. Are these symptoms of hEDS?
Morale
Where can I find a doctor in New Jersey that deals with EDS? So far, most doctors I have seen are not aware.
Thank you