Often when I tell people that I'm disabled they look at me and say "But you look so well and healthy." This leads me to explaining that M.E. is invisible and while I may appear okay today, it fluctuates so often I am unable to move very much at all, and sometimes can't even get out of bed. And then comes the response, "I know what you mean, I have those days too." This post is to show that no, you don't have those days too (if you suffer from M.E., feel free to skip this post) and that no, you don't understand. I don't mean to sound so callous but it's true. But to help you out I'm going to try and give a few examples of what having M.E. can be like. Please bare in mind that this is just my experience with it and I am relatively well in comparison to many sufferers (I can leave the house some days and I'm typing this).
-M.E. is needed the toilet badly but being unsure if you can physically stand to make it to the bathroom. Every time is a choice of extra excessive pain or doing your business where you lie.
-M.E. is not allowing your partner or friends to hug you because the lightest touch feels like you are being punched.
-M.E. is ordering take-out again (even though you had it the day before and you're broke) because you aren't able to prepare yourself anything.
-M.E. is wanting to write this blog post last week but not being able to as you can't concentrate on what to write for more than a minute or so.
-M.E. is seeing the gorgeous sunny days happening outside but knowing that if you go out and enjoy it you won't be able to do much (if anything) the next day.
-M.E. is wanting to go to the gym every day simply because you know you can't.
-M.E. is putting on weight because you are unable to walk far, let alone do proper exercise.
-M.E. is knowing that the majority of people you tell, think you are either lazy or lying.
-M.E. is jumping every time a car drives past or something is knocked over and causes a noise.
-M.E. is crying every night for the life you know you can't have.
-M.E. is spending every day feeling exhausted but when it comes to bedtime you are unable to fall asleep.
-M.E. is losing friends because you aren't able to go and see them anymore.
-M.E. is knowing that your only social life is online.
-M.E. is knowing that you want a full-time job but will be lucky to cope with a part-time one; unfortunately you are overqualified for all part-time jobs.
-M.E. is catching every illness and disease that comes near you.
-M.E. is feeling like you have the flu every single day for your entire life.
I hope that this has helped you understand the life I live a little bit more and next time someone tells you they have M.E. please don't say you understand (unless you really do). If you have any questions I will be happy to answer them and if you suffer from M.E. feel free to add to the list.