I am not an expert on many things, in fact I am actually an expert on very little. Having never lived alone I can’t run a house, I’d have no clue how to buy or sell a home and how to go about sorting out and paying for it. I have a pretty poor sense of direction, if I tell you that I once spent about 15 minutes lost in a service station’s toilets you might get some idea of how poor. Much as I love animals I haven’t had many pets and none since my very early teens, therefore I’m not an expert in them. I enjoy pets, and I’d give almost anything to have one but I’m not an expert in them. I take an interest in politics but could never run a county, I’d bankrupt it in days by giving every department the money the needed whether we had it or not!!!
However believe me when I tell you that I am an expert in my body, what causes it pain, what in the past has worked to help that pain. I am also an expert in my fatigue, what causes it, when I’m having a bad flare and when I’ve had enough. I may not be very good at pacing myself or following what I know I should be avoiding etc, but I do know what causes flares or issues. I also am an expert in how things affect me, how they can relieve my symptoms or flare them up. I know what I am allergic or intolerant to, but with that I only know specific things that I react slightly worse too. I know that I am going to have a sensory overload or panic attack (both affect me slightly differently, very slightly) if I don’t take steps to help myself stay calmer e.g. my fiddle toys etc.
Recently a number of issues have arisen where people have ignored me and caused a problem, either pain or fatigue, anxiety or overload. I am not getting at you, I am not trying to be a huge pain, I’m not trying to make you look stupid or upset you. I am simply more of an expert in ME than you are. I plan my hospital appointments because I know that more than one in a week causes an overload. I know that if you go too fast down a drop kerb that isn’t very low it will either cause the wheelchair to drop suddenly and hurt me, or it will tip me out. I know that certain roads hurt me more than others, certain turnings are worse than others and I can tolerate them more on a better pain day. I know that if a waiting room “looks quiet” to you, that to me it isn’t and I can hear things that maybe you can’t so it’s going to cause me to have an issue. I can smell things that maybe you can’t, or I know that a certain smell while nice for you is going to set my allergies off because it’s not one I can tolerate.
Believe me when I say that I am more of an expert than you are in me, I’m not trying to be difficult and I’m not trying to cause a problem. I hate being the centre of attention and I hate fuss so that is not what it’s about. It just very simply is about me being the expert in me.
So have you had some problems like this too? Do you have to tell people time and time again that doing something is going to cause you an issue? Can you relate to this? Have you perhaps developed a way of sorting this out without causing arguments, let me know. Until next time, take it easy on yourself.