My name is Tammy Bose. As a healthy 30 year old, I was jogging 20 miles per week faithfully (since I was 18), holding a full time job as a nurse, and was generally energetic and active. I used to bike ride a lot and go country dancing four or five days a week, in addition to my regular exercise and 12 hour shifts as a nurse in the ICU. I enjoyed skiing, hiking and orienteering, and many other activities.
Then I had a new job working in a pain clinic, and I began to notice that many of the symptoms my patients were listing were symptoms that had been slowly creeping up on me in the past several months.
Over time, my symptoms got worse. It started to be painful to take a shower, and I had to wear my clothes wrong-side out, as the seams were painful against my skin. Sometimes flares would occur, coming on suddenly, and lasting for a few days or longer. I would feel like I was suffering from a severe burn, with burning pain everywhere I had skin, including my scalp and the bottoms of my feet. My skin was red and hot to touch, but I had no fever. Clothing was out of the question, movement was intolerable, and light and noise were excruciating.
Funny, I don’t remember requesting a chronic pain condition.
I don’t recall doing anything to deserve it.
The flares would pass, but I still had pain, constant fatigue and insomnia. I later learned this condition of burning pain is called central pain syndrome, a neurogenic type of pain. The fatigue and insomnia are related to a condition called fibromyalgia, a condition of unknown cause that is difficult to treat, varies greatly between individuals, and causes most physicians to turn and run in the opposite direction. I was later diagnosed with rheumatoid arthritis, another painful autoimmune condition.
So I have experienced many of the same losses you have. Loss of career and income. Loss of your ability to take care of your family, or even make dinner. Fear of the future. And guilt over what you can no longer do, because someone has to do it for you. The lack of understanding from healthy peers. (“But you look fine!”) Turning down invitations to do things you used to enjoy and take for granted.
I was fortunate in many ways. I finally found a doctor who not only treated my condition, but was a researcher on the the subject as well as a clinician. We could afford to hire a part-time nanny to help with my two children. I had an understanding family.
I recovered slowly over time. I still don’t know why; many people with this condition do not improve. When we moved to Arizona I slowly took up tennis, and eventually I was able to play up to four hours of tennis per week. This was nothing short of miraculous for my diagnosis.
I still have to take medication, I still have pain every day, and I have to be very careful not to overdo. I will likely always have my struggle with insomnia (due to fibromyalgia). I eventually had to give up tennis due to the arthritis in my hands.
So I need to take some of my own advice from this website. I hope this information will help you to do what I try to do,
take joy in each day where I can find it.
This photo of two leaves can be found on posts and pages in this website. There are two leaves, one is healthy and green and one is brown and crumbled, but they are together, afloat on the same pond.