Hi! I’m Carole Griffitts, married 52 years with two sons and daughters (daughters-in-law) and seven grandchildren. We’re a close family and enjoy doing things together, especially outdoors. They adapt activities as needed, so I can participate, too.
About my disabilities
I have 3 major conditions which, unfortunately negatively interact with each other. This causes strange symptoms no one can diagnose; they can only treat.
An autoimmune disease that for most people only causes dry eyes and mouth. However, if it becomes extra-glandular (jumps outside of dryness issues), it can affect any organ in the body. And mine has. I have one digestive and two neurological problems.
Primary dystonia is a movement disorder causing involuntary movement and/or spasms. Since it can affect any muscle area in the body and differs from person to person, it is a strange animal indeed. It originates in the central nervous system, probably the basal ganglia. There is no cure. Treatment involves Botox injections in the affected muscles every three months. Fun! For me, my types are general (meaning it is genetic), cervical, and focal (hand). My dystonia is spreading to more parts of the body.
My third, and least disabling, problem, if it were my only difficulty, wouldn’t do much more than slow me down. Thirty years after having polio at age two, I developed new weaknesses and fatigability; they call it post-polio syndrome. It means some nerves originally damaged but recovered began dying off, leaving fewer to enervate accompanying muscles. This results in healthy muscles just being unable to carry the load they previously did.
My life before
In 1978, we had been married twelve years; our two sons were seven and ten. My husband was working on his Master’s at seminary. I worked in the library there—a job I loved. We were a happy family looking forward to our future. I enjoyed being with my family, sewing, cooking, and reading.
And then …
I sustained a severe injury at work for which no one could find a reason. I tore every back muscle on the right side from mid-back to waist and spine to side. We knew the repetitive motions at work caused it but not why. It took a year to recover 95% of my function and then it happened again. I only partially recovered that time. My employer continued my wages so my husband could finish his schooling even though my work hours were severely diminished.
The diagnoses journey
No one could understand why my spasms would seem to heal, then return; nor why my muscles fatigued so easily, predisposing me to more spasms. Post-polio syndrome became recognized in the early 80s; I was diagnosed in 1984. It was a firm diagnosis but didn’t fully explain all the symptoms.
I was invisibly disabled then in that I could no longer fully participate in life. I could not work. I could not sit more than two hours (though I could push it to three or four occasionally). I could not walk as others do. A pattern or a couple of hours activity followed by one hour of rest continued for the next twenty-five years.
Then new symptoms appeared, and cervical and writer’s dystonia were diagnosed. Botox treatments brought relief. About ten years later, a neurologist diagnosed generalized dystonia, and suddenly several oddities early in my life were explained.
In 2005, Sjogren's syndrome appeared but wasn’t diagnosed until 2009.
My life today
Fatigability is my biggest issue, the most difficult do deal with, and the hardest for others to understand. It is not being tired, per se. It is muscles that will not sustain normal activity. They tire extremely easily and are prone to injury. Sometimes, I end up exhausted for relatively little effort. The only treatment is to rest until they return to normal. Since the muscles can still atrophy, I walk a fine line: do as much as possible without tiring to the point of exhaustion or injury. Gentle exercising, using techniques my PT taught me, is essential.
I do deal with pain both from fatigability and from muscle injuries. The dystonia causes pain, too. Secondary problems from Sjogren's also cause some pain. My pain can occur overall or specific to a muscle. It is only sometimes horrendous, but there is always some pain. Botox helps as does physical therapy. Currently, I’m not using pain meds on an ongoing basis because of other medical problems. I supplement with Tylenol and Meloxicam using Tylenol with Codeine when things get bad. I use Gabapentin for unknown neurological problems, Pilocarpine for dry mouth, Pyridostigmine for swallow problems, and Amlodipine for Raynaud’s.
Impact of my problems
On the negative side, I must pace myself carefully. alternating rest and activity daily. Currently, I’m up about an hour, then down 1-2 hours. When I’m up, I vary the activity to use different muscles. When I’m down, I read or use my laptop—both have been adapted to spare my arm muscles. I’m unable to work and don’t have dependable strength. My life is very restricted.
Never knowing what my strength level will be makes it hard to make plans. Taking part in social activities is difficult. Overestimating my strength can cause painful spasms or exhaustion, taking days to weeks to overcome.
Socially, this causes isolation. A few friends understand. Thankfully, I have a great family and some friends who are willing to adapt their plans so I can come, too. We attend church weekly, at least when I’m able. We occasionally have friends over. I belong to a dystonia support group.
I’ve turned to the internet for connecting to people. My laptop’s name is Expanded World.
On the positive side, I designed a website providing tips and encouragement for those experiencing invisible disabilities and information for people who don’t. I’m in the process of adding lots of resource links for others to research. Bi-weekly, I blog—or use guest blogs on a variety of issues. My husband and I are also writing a book using our experiences as a family to encourage and inform. Through my support group, I made contacts allowing me to share about my life. Scary—and fun.
I’m probably a better person for having gone through these difficulties. This discussion would not be complete without mentioning God. Although He has not healed me, He has been with me throughout this time. He has encouraged and upheld me. My hope is in His presence in this life and in heaven in the life to come.
Tips for living
My most important tip for you if you’re living with chronic illness is accept it and work with what’s left. Of course, do everything you can to find medical help and answers. Research. Join support groups. Hopefully, find a good medical team. Beyond that, though, realistically evaluate where you are, if you can improve, and if not, then what you can still do.
Try not to worry if others don’t believe anything’s wrong. Accept yourself and know you’re doing what you can.
See if there’s anything at all you can do for someone else. Make a phone call. Write a card. Send an email.
If you don’t have a chronic illness, maybe you know someone else who does. Likely, their biggest need is understanding and acceptance. Even a “hi” is so helpful.
I’ve enjoyed chatting with you. Hope you’ve learned something about my world. – Connected Carole
- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -