When I was diagnosed with M.E., I thought that it was something I had just started having. My doctor has been doing some digging on the illness and on my own particular medical history. And she has come to the theory that I might have been suffering with M.E. for at least 7 years, if not longer.
Around May/June 2008 I got a weird fever. It was like nothing I had ever had before, came one day out of the blue and stayed for 2 weeks. I went to the doctors, we got tests done and nothing came back – absolutely nothing. I flew to Vienna for 2 weeks at the end of July and two days after returning to Portugal, I was admitted at the hospital where I would remain for two weeks. At the time no one would tell me what was going on, no one talked to the doctor who had previously treated me. I was pumped with medicine to which I had informed I was allergic to (cortisone), but no one listened to me. That alone left me with some health issues.
My doctor’s theory is that I had some kind of glandular fever at the time, that just wasn’t caught in time and that earlier this year the high fevers I had made my brain swell and therefore relapse. I called my Mum today and told her about my doctor’s theory and she told me that I had some weird fevers around the age of 3 to 5 that no one could understand. As much as I do not want to admit it might be true, the reality is that I’ve had some M.E. symptoms for a long time, much longer than 9 months.
To be honest, I don’t know how to feel about this. It makes sense, some of the issues and symptoms I’ve been having for what seems like forever, are classic M.E. symptoms. Dizziness, not being able to control my own body temperature, hot and cold flashes, low blood pressure, pain…especially the pain. My Mum said I started complaining about pain in my legs from the age of 4. Not being able to play sports like other kids, I would get so much pain after sports…my heart would be racing.. All of these things just scream M.E. and no one ever thought of it! Even on those times I was more active, I would feel so much pain days after working out, my heart would race so fast days after. I had people telling me I should workout more and it was so frustrating not being able to explain how I felt.
When I first got the diagnosis, back in August, I was frustrated. I was scared. I was at the end of my emotional state. Now I’m mad. I’m mad that I might been living with this for so long and no one even tried understanding it. Thinking of how many meds I’ve taken…that I might not even have needed…what damage they could have done to my body. All the things I went through..all the “panic attacks”, all the times I had pain…I’m so mad that no one ever thought that it could be something else, something more! Another thing my doctor thinks is a dead-tell sign is the fact that I’ve always had a very very low immune system – I get colds like no one else!
I’ve never trusted doctors. I don’t know why, I just never did and once I started growing up and would get answers to my problems such as “that’s puberty”, it only got worse. I don’t know if my doctor’s theory is correct. I don’t know if I’ve had M.E. for 9 months, 9 years or 20 years. But right now, I can only live with what I have and try to turn my anger and frustration into positive thinking and strength. The good thing is that my doctor is a really good doctor, who tries to do everything to keep us healthy and not relapsing. And she’s the only doctor who accepts insurance, which is also a plus!
If anything, this just makes me want to bring even more awareness into the disease!