When I wrote about what has been going on with me and my health, which you can read here, I was not expecting the amount of support I received. I was scared to be misunderstood and judged. And I am so thankful for all of you who reached out to me and who gave me your support. I also got a lot of questions about what Myalgic Encephalomyelitis actually is. I decided to answer those questions today, as good as I can.
M.E. is a form of brain inflammation and brain chemical imbalance or, in other words, it is a kind of injury to the CNS (central nervous system). Most cases are believed to be triggered by disease, in my case it was a form of glandular fever misdiagnosed as a flu. M.E. is also often said to be a form of CFS (Chronic fatigue syndrome) because it makes your body so weak and tired.
Since the brain controls the body, you can imagine what happens when the brain gets damaged. Symptoms differ from person to person, just like everyone’s brain is different. The one’s I suffer with include:
- Fatigue and exhaustion (both mental and physical) that do not go away with rest or sleep;
- Muscle and joint pain;
- Vertigo and dizziness;
- “Fog brain” – difficulty concentrating, remembering things (the short term memory is the most affected);
- Inability to regulate your own body temperature;
- Excessive sweating even when it is freeing;
- Extreme sensitivity to loud noises and bright light;
- Sleep problems (I’ve been falling asleep easily, but waking up feverish during the night after very hard days);
- Heart rate fluctuations – in extreme cases I sometimes have to lay down;
- Digestive problems and food intolerance – we found out I’ve always had a Histamine Intolerance, but the M.E. has made it not only get out of control, but also makes my body react to foods that aren’t even high in histamine or that I’ve never been allergic to! So I never know if I am going to have some kind of reaction after eating something.
- Muscle weakness and spasms – I have days when I am reaching for something and it falls off of my hand or I spasm when I want to hold it, causing whatever is in my hand to fall;
- Muscle pain – This is something I’ve struggled with my whole life, but now it is extreme – it has become a daily situation and somehow even just getting touched hurts me, I feel like my skin is on fire sometimes and pain killers do nothing;
- Cognitive issues – not understanding/being able to talk – probably the worst of them all for me. I feel like I have to look at the person that is speaking, so I can read their lips and understand them. But I’ve noticed it gets worse if I’m tired.
- Gland tenderness – I am getting my tonsils removed because they’ve been swollen ever since I first got sick (since in my case the virus lodged there).
There are many, many other symptoms of M.E., these are just the ones I struggle with the most. Like I said, they can be different from person to person. I can personally say that I suffer more with the cognitive part of it. Maybe because I’ve had muscle pain for a big part of my life, I can handle the pain (even though sometimes I get emotionally exhausted from it), but it was 1000x worse when I couldn’t understand anyone this Summer. I couldn’t read or understand what people were telling me and the weird thing is that I could understand one language fine and another not, some day I could read fine and others not. Maybe because language is such an important part of me and my identity (I grew up multi-lingual and studies languages) it ended up being the worst for me. I am happy to say I am much better regarding this situation! If I am outdoors somewhere with noise, I will need the person to be looking at me when speaking so I can understand them, but other than that it has gotten much better.
Someone asked me if I had gotten to terms with having this and it made me thing. No, I haven’t. I don’t think I’ll ever do. But I have decided to make the best of it and try to live my life as normal as possible. If that means having to sit down when everyone else is standing, so be it. I want to stay positive, because I know if I let the sadness and anger take over me, I will lose. I will lose myself and I don’t want that. I have had to give up so much due to this, I cannot work out as I used to, go out as I used to, read as much as I used to or even write. I am not going to let this illness take my personality away, take “me” away. Yes, this has changed me. Who wouldn’t change in this situation? I have become impatient towards people who complain, but are healthy. And I have started putting me first, instead of always putting others first as I did my whole life. I always try to keep in mind that everyone is different and that for someone else, something that to me (due to this situation) is nothing, might be everything to them. People feel differently and I try to remember that. But I also learned to admire those who’ve suffered with this, or any chronic illness, their whole lives. People who are disabled, people who get up every morning even if they’re so tired that they just want to stay in bed, even if every movement hurts. And it is that, what makes me get up every morning, endure every pain without complaining (much, at least). At the end of the day, I want to go to bed knowing I did my best, I lived the day and I learned something. Because I don’t know if tomorrow I will be able to get up.
I hope this clarified a bit of the illness, to those who asked. And once again, thank you for being so supportive!