My wife died in 2008. It was the same year my daughter was diagnosed with Ehlers Danlos Syndrome (EDS). We have dedicated a new program in her memory at www.edsawareness.com. We are helping to form new EDS Support Groups and to create a directory of them. We are also hosting two monthly live EDS educational webinars.
My wife and I were married for 41 years. You’d think that after all of that time you would know everything there was to know about a person. I knew Carol was a loving person who would do anything she could for the kids and the family. She was a social worker and was very concerned about the comfort of others She didn’t complain and didn’t want others to worry about her.
The symptoms started shortly after we were married in 1967. Carol was a very energetic lady who had just graduated with honors and a master degree in guidance and counseling and she was anxious to start this new career. She also was somewhat of a perfectionist who wanted to keep the house clean and organized … but started to develop some pains as a result of all of this. I remember we attended the Lamaze classes in 1969, when she was pregnant with our first daughter. The instructor commented at how flexible Carol seemed to be during the exercises. Our first daughter, Deborah, was four weeks premature and our second daughter, Deanna, was about seven weeks premature. We joked that if she got pregnant again we would have to carry around a basket to be ready for the next one.
Carol’s joint pain got more severe in the eighties. She was the first director of a new crisis hotline in the Cleveland, Ohio area and she was working unusually long hours. With all of these mental and physical stresses she was going to a chiropractor monthly and then weekly. She was getting massages on a regular basis. Initially, her neck, back and shoulders were the major issues. Then she developed chronic problems with her hips, knees, feet, etc. The doctors did not seem to understand her pain and they could only recommend pain medications, topical creams or muscle relaxers. It did not seem to help. She was diagnosed with Thoracic Outlet Syndrome, TMJ and maybe Fibromyalgia … but they were not sure.
She could only sustain working for a few more years with flexible hours, then it got to be too much for her physically.
She described her constant pain as “achey or throbbing”. She had frequent episodes of radiating pain, stabbing, ’pinched nerves’ and numbness. She would say things like ”I will hurt myself if I reach or stretch for that item, or if I bend that way or if I twist my body.”
She would describe affected parts of her body as shifted, twisted, crooked or her favorite word “dis-combobulated” (meaning everything is zig-zag and out-of-whack).
We had never heard of joint hypermobility or Ehlers-Danlos Syndrome (EDS). We did not know that her symptom descriptions were suggestive of unstable, loose joints.
Soon, I discovered that I was taking over the household tasks of cleaning, doing the dishes and the laundry. Some family members commented that Carol “looked perfectly fine” – so she must be lazy and just taking advantage of my help. I knew there was a problem with her pain, but I did not know what it was or what else to do to help.
In addition, Carol had severe environmental allergies, IBS symptoms and an extremely sensitive stomach. She avoided certain foods, spices, and oral medications due to this. Her allergies often put restrictions on where we went out for dinner or social activities and where we purchased certain items – always avoiding chemical odors, dust, pets and cigarette smoke, etc.
Carol had very flat feet and was prescribed orthotics. Her feet were always hurting and finding comfortable shoes was challenging. She had very sensitive hearing and was a very light sleeper. Even low volume noises or voices in the next room would wake her. Pain and disturbed sleep meant she always woke up exhausted!
Carol had a lot of extra pain if she tried to carry something that was awkward or too heavy (ie. weighing more than 2-5 lbs., depending on her pain level that day.)… By age 8 and 10, my daughters could carry heavier items than Carol could, so the kids and I did a lot of the fetching, carrying and cleaning for her. I made most of the meals and got the kids off to school.
As a result of her sleep problems and pain, she was in bed until the kids got off the school bus. The girls would run upstairs to the bedroom, eager to spend some quality time with mom – as she was getting out of bed in the middle of the day. Moments like these with her girls gave her some comfort and support. The girls remember these as a special times, but they sometimes felt embarrassed – they could not tell anyone that their mother was in bed all day.