Do you remember when you were diagnosed with a chronic illness? More than likely you can recall every detail. Why? Because at that moment your life changed, you were scared, and you had many questions.
When I was diagnosed with fibromyalgia in 2002 I was a wreck. I couldn’t manage appointments on my own. I was over medicated, overwhelmed and felt too undervalued to advocate for myself.
I’d been working as an RN for 25 years, most recently as a community health nurse. Due to the pain and fatigue, I had to leave my job and I found this hard to accept. I’d been to physiotherapy, occupational therapy and psychologists. But I wasn’t feeling any better. I was losing control of my life.
When the rheumatologist announced that I had fibromyalgia I felt strangely relieved. At least I had a diagnosis. But I was afraid. I had so many questions about fibro and there weren’t many answers at the time. He then said something that I wasn’t happy about. I thought it was harsh, but I needed to hear it.
There was nothing more he could do for me but recommend an intensive one-month self-management program. This was held in a city about 3 hours away from my home. I’d have to live away for the month to participate in it.
I started to cry. My son was only 7 years old. I would miss my daughter’s prom. How would they manage?
Then I thought…. how do they cope now? I am a mess. I am not working. I am always sick. I needed to learn how to manage this condition both for me and my family.
So, after a lot of crying I reluctantly made the decision to leave home and attend the Fibromyalgia Day Program at St. Joseph’s Hospital in London Ontario (no longer offered).
With the help of family and friends, things were arranged at home and I left for London. I was angry that I had to go and I took my anger out on those that meant the most to me. I’m ashamed of my behaviour now.
So, for one month, Monday through Friday from 8 a.m. to 4 p.m. I attended intensive therapy at the hospital. There was occupational therapy, physio, social work, psychology, peer support and each Friday the families met for group therapy.
I found the peer support was most helpful. I discovered that I wasn’t alone in my feelings. All six participants were angry and or anxious and we were all at different stages of our journey. We were each others’ cheerleaders and we are still friends.
Program leaders taught us great self-management tools. We learned that there would be good and not so good days. It was a long four weeks with plenty of tears, but it was well worth it. I have used those skills every day since and have often said that the program “saved my life.”
Since then I’ve been diagnosed with depression in 2004 and just last year with rheumatoid arthritis. Each time I held a short pity party and then got back on the road.
Using the knowledge and experience I’ve acquired I am able to live a good life. I live by these 3 principles:
- Management of Symptoms
I’d like to share these skills with you in my blog Chronic Illness Conversations. They will make a positive difference in your life too.
So that’s how I began my chronic illness journey. I’m still traveling. Some days the road is smooth. Some days it’s bumpy. But if you have the tools to manage the trip you can still enjoy it.
Do you remember how you felt when you were newly diagnosed?