(In her own words)
My name is Dawn. I am a 35 year old, registered nurse, living in Ottawa, Ontario Canada and I have had Lyme disease for close to 5 years.
I can’t even pinpoint when it started. Never remember the bite, don’t remember the bulls-eye rash but I remember when I was at the point where I didn’t think I could live one more day like this.
I’d been suffering for at least a year and was continually being diagnosed with depression. More antidepressants, higher doses, nothing was helping. I was exhausted 24/7, I was nauseous, I was achy, my joints hurt, I had headaches, and my heart would race.
I actually remember a day when I was at work before I was diagnosed. I work at a children’s hospital that is very busy. My patients always need me and that specific day I remember, if anyone was looking for me, you couldn’t find me helping my patients as I wasn’t there. Where I could be found was in the fetal position, in the medication room crying! Bawling!What was wrong, no one knew, I didn’t know myself! I just knew I couldn’t stop crying and I wanted all the pain in my body to go away.
But then the symptoms became even worse. Unbelievable road rage where if someone cut me off, I’d follow them for a while. “How dare they cut me off…they must be punished” was what would go through my head over and over again. And the clincher, coming out of work another hospital employee was upset that I hadn’t pulled out fast enough and made a gesture to me before she drove back to the rear staff parking lot. The thoughts that came to my head, I don’t even want to put on paper but again, I thought of harming someone out of utter anger. I’m a registered nurse who works with children; I don’t like conflict and have devoted my life to helping people, what in the world was wrong with me to make me want to hurt someone?
I called the doctors immediately because I’m not an angry person and if they wanted to keep telling me I was depressed, then in my mind these antidepressants were making me worse!! The doctor put me off work and it was test after test. Lyme disease is not well known in Canada, so doctors don’t test for it, let alone even think of it. My symptoms continued to get worse. I’d sleep all day, and crawl to the bathroom when I needed to. My diet was a cold bottle of ensure from the fridge once a day, twice if I was lucky as it was the only think I could stay awake long enough to drink. I dropped 40 pounds. I had constant headaches, constant joint pain, muscle cramps, tremors and don’t get me started on the nausea, and the constant chest pain. Some days it was as if I could feel every hair follicle on my head and it was so painful and others it felt like my heart was going to pound out of my chest. I had an elevated sense of smell and could smell things from a mile away. I cried for hours a day.
I continued to go to doctor appointment after doctor appointment and would show up in dirty clothes. I could hardly get food in to me in a day, no way laundry or my house work was going to happen. I finally one day at an appointment told the doctor I couldn’t take it anymore. I was going to die. I could not live like this any longer. Either “whatever was wrong with me” was going to kill me, or I was going to give up and end the fight myself! For some odd reason, and he never told me why that day, my doctor checked the box to test me for Lyme disease.
The day they called to tell me to come in, I thought I had my illness figured out. I was sure I had MS. At the doctors I was utterly shocked to hear it was Lyme disease. While I thought a diagnosis would mean I’d be “cured”, it’s been years of struggle for me. I was off work for 14 months and missed my 32 birthday as I slept through it due to being so sick! It was 3 months of doxycycline in 2009 and another month of it in 2010 but throughout the treatment, I have heard so many times that it’s impossible that I got Lyme disease in Canada. It’s as if doctors think ticks carry passports and don’t cross the border!
Sadly, I’ve always thought of the Canadian Health Care as the best in the world, heck I work in it but when it comes to Lyme disease, we don’t stack up very well. I’ve never felt “well” for long periods of time and don’t think I even know what it would feel like to have energy! I continue to have bouts where I spend days at a time in bed, have daily headaches, joint pain, nausea and most recently began experiencing the irritability, anger and fear that I’m going to die. I went back immediately to the doctors this year when it started to get worse again to make them aware that all my symptoms were back and ask for treatment. A resident at my GPs office used to the words “you just need to cope with it” and “do you want some antidepressants”….no, what I want is a course of treatment so that I can enjoy the quality of my life…I don’t want to cope…I want to LIVE.
But that is where my story is right now. Part of me feels “crazy” as it seems no medical professional believes my symptoms are back and it seems they can’t offer me any course of treatment other than to tell me it’s most likely “chronic Lyme” with no treatment available. Coworkers and some friends are giving me the “you don’t look unwell” but don’t realize that I stay home, alone, when having my symptoms. Who would want to hang out with the girl who is sick all the time? People think of Lyme as this little tick bite and you take some antibiotics and you feel better. They don’t understand the utter pain it causes and the devastation it wreaks on a person’s body! Lyme disease has lasting effects and has been part of me for the last 5 years. I’d give anything to have the old “Lyme free” Dawn back…anything!! I don’t think it’s asking for much…I just want my life back!