Update on my illness

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! 

Facebooktwittergoogle_plusredditpinterestlinkedinmail

4 Comments

  1. Ema Coviello
    Thursday October 15th, 2015 / 04:53 PM

    Hi Rosie
    I think many ME sufferers probably had some form of illness in childhood. I have been diagnosed for 5 years but my symptoms go back to when I was 2 years old and nearly died. I spent 2 weeks in hospital and was diagnosed with asthma. But drs at time were not happy with my diagnosis they came out to see me as my asthma wasnt the same as other childrens. I had physio every week with other children but as they got better I got worse, so physio was stopped for me. As noone knew what was wrong I think it was just ignored. I have been told I am hysterical and there is nothing wrong with me. While my Mum was alive she did try to get doctors to listen. But it is hard for anyone to see that there is something wrong even doctors!
    I had a lot of pain as a child and every time I tried to join in any sort of sport or game I would be ill. Its not normal to be like that. I would say you probably have had ME, maybe all your life as I think I have. I believe its down to some fault on a gene that has not been found yet. Just lately some other relatives are being diagnosed with auto immune problems and fibromyalgia so I do believe we have all inherited a faulty gene. Maybe one day it will be found. It took a long time before they realised it was a gene that caused breast cancer.
    Hugs to you xx

    • Wednesday December 2nd, 2015 / 11:20 AM

      It infuriates me when people say we’re faking it or just hysterical!! I had the same problem with sports…but sometimes I would get better and then when I’d relapse I would get worse again and not be able to play again. No one else in my family has this…on my mum’s side there’s a lot of rheumatic issues, but nothing like M.E. I’m going to a Neurologist in a few weeks and I hope it helps!

  2. Sunday October 18th, 2015 / 10:50 AM

    I’ve heard of M.E. before but I’ve haven’t really heard much! As you said you should always keep positive and try to turn all your negative feelings into positive ones 🙂 Some diseases should me talked a lot more so that people can be aware of its existence, symptomes and diagnosis! Keep strong <3

    • Wednesday December 2nd, 2015 / 11:21 AM

      Thank you Rita! That’s why I write about it, to bring awareness to the illness…even though it is hard as hell to open up about it and expose myself in such a vulnerable way…maybe it will help change people’s way of thinking about it..

Leave a Reply

Your email address will not be published. Required fields are marked *

*