Those of you might have noticed that something has been going on. I have thought a long time if I wanted to share this with you guys, a part of me wanted to keep it just between myself and my loved ones. What made me change my mind was a combination of things, one of them being that some of you have followed me through my journey until now, some of you even for almost 10 years and I’ve always shared most of my things with you.
So here it is.
In the beginning of the year I got sick, a normal flu like so many others before. Or so I thought. I went to the doctor multiple times and she would always tell me to rest. At the end of March I developed what was then diagnosed as a tonsillitis (tonsils infection). I was prescribed a Penicillin based antibiotic and went home only to go back two days later with severe rash, was told it was fine and to keep taking the meds as prescribed. Turns out, it wasn’t a rash and it wasn’t ok. I did not have a tonsillitis, I actually had glandular fever which can sometimes be mistaken with an infection of the upper respiratory system. However, the moment I went back to the doctor with the rash all over my skin, he should have identified the issue right away as it is one of the most known after-effects when treating glandular fever with a penicillin based antibiotic. Because I kept taking the meds, like the doctor said, the glandular fever developed into something called Myalgic Encephalomyelitis (M.E.), which is similar to the chronic fatigue syndrome but with a lot more cognitive and mental issues. It basically, very simply put, is a brain infection that cannot be completely cured.
On the journey to find out what was going on with me, we also found out I have a Histamine intolerance. The M.E. has made my intolerance go out of control, which means right now 99% of foods give me a reaction. There have been days I’ve only eaten cucumbers or grapes because that was the only thing I could eat without feeling like I was dying. Since M.E. also targets the brain, I also have developed concentration issues, cannot control my body temperature (meaning I can be cold at a 37ºC weather or hot when it’s cold) and cannot assimilate any vitamins or minerals as to now. This is something that might change in the future, but for that I’ve been going on weekly trips to the doctor to get infusions (where they kick the vitamins into my body through my veins). If I don’t get them, I start having what I call “fog brain”, where on the worst case I stop understanding what people are telling me.
I am lucky enough to have found not only a doctor who is specialized in M.E., but also have had the unconditional and amazing support from Lorna who suffers from the same thing. She has been an amazing help!
What made me decide to write about this was mostly because there is not much information out there about this disease. It’s not very known and the things you find are mostly written by doctors. It can be very frustrating not only for us who suffer from it, but also those around us, to understand what is going on. This is not a visible disease. It is not something that you can see, yet it does disable those who have it.
It scares the crap out of me to write about this. Mostly because I do not want to be seen as weak or people to see this as a “poor me” blog, because that is NOT who I am or want to be seen as. But the fact is, I have a platform here where I reach thousands of people. If I write about my relationships or my eating disorder here, why not about this? I was too ashamed to write about it until now, ashamed to admit I am sick, but if I can help bring some awareness to this disease and help someone through it, it’s worth putting myself out there.