I have to wonder if people really understand what its like to have ME. I get that its not easy, I do but is it really that hard to understand?
When I sit and really think about it, it probably is that hard to understand. People can look at me and forget that i'm ill. Well at least for a few hours. After that the fatigue and whatever other symptoms I have that day kick in with a vengeance, my dark under eye circles start to show through my concealer and I start zoning in and out of conversations. Thats when they remember.
But even then, only my parents really see what happens after that. Like going out to lunch for a few hours... then coming home and falling asleep because theres no energy left to keep my body awake and functioning. Or the days when I barely say more than a few sentences to them because my brain isn't working and I cant hold a conversation, or because I simply don't have the energy to spare.
Your brain uses 20% of you energy a day to just work, for you normal people that doesn't really matter as you have another 80% for any and everything els your body needs to do. Recent tests I have done have shown that my body runs on 34%. Think about that for a second. 20% of that goes to my brain, leaving only 14% for my body, for everything els. For walking up and down the stairs, for having to stand up in the shower and wash my hair, for every internal biological process needed to keep you alive.
Can you understand now why we cant do all the things you can do? Like if I shower and wash my hair, I cant leave the house the same day without overdoing it. Or that leaving the house two days in a row is a BIG thing! Why I haven't learnt to drive yet, or had to stop my education.
Being chronically ill is hard. Most of the time it sucks.
BUT... Being ill has given me a different perspective on the world. Its made me more positive and it has made me a thousand times stronger because of everything i have been through .
Yes, I may have days were I cant move because of the pain or cant see the people I love because of the fatigue. BUT there are people worse off than me. I have a beautiful home, an incredible family and my friends are some of the loveliest and supportive people on the planet (online spoonie friends included!).
Being chronically ill has taught me that the world is a beautiful place, filled with incredible wonders and amazing people.
So, please do not judge a book by its cover, human beings are more than what you see.
Love to all