“Understanding Arachnoiditis: Please Hear Me” ~Dawn M. G.

People sometimes just don’t get that yes I make sacrifices daily to live and do things but will pay for it greatly. And that normally causes me to crash and have a few days rest. Yes when I push I can do something I really set my mind to but it comes with a price. When I say no, I can’t do that, yes, I may have done it in the past, but i paid for it dearly! And it’s not that I don’t want to, it’s just that I realize my limits and capabilities.

Yes, it seems like I always do try and do the fun stuff, but don’t push myself as hard to do things I don’t find as important as making memories and living an enjoyable life. And yes I say no to stuff that is normally everyday stuff because I’m usually paying for just trying to be there to have somewhat of a life. It just doesn’t seem to make the connection there. This is when the Spoon Theory comes in handy. But some people just don’t listen no matter how many times you tell them, and won’t take the time to read and understand.

Yes, I do have new explanations for symptoms and pains, because yes, I am always learning new stuff about why I get this pain, this symptom, why I should avoid this because it leads to that, I need to do this now because it can cause that, and I do this now or don’t do that because it’s happened in the past and I’ve learned my lesson, and no I have absolutely no idea about the future. I live in the moment. I have absolutely no choice.

Yes I’m having to learn how to do things differently, and I’m learning constantly my cans and cant’s. Yes my moods change frequently because I can feel a little better today than yesterday, which made me feel like I accomplished something, but tomorrow I’m going to be cranky and depressed because I’m going to be feeling absolutely awful from doing the smallest things, and yes I’ll be full of emotions because it makes me realize just how much my life has changed.

Yes sometimes my mind is occupied so I forget about what tomorrow will bring but the same thoughts might scare the living crap out of me tomorrow because I’ve actually had time to be in my head for a while and face whatever tomorrow may bring.

Yes all of this does exhaust me, confuse me, depress me, frighten me, and no I really don’t understand things any better than you do. Yes you do hurt my feelings when you scoff at me thinking I can do something in the future that I wasn’t able to do yesterday, and can’t even get out of bed today.

Sometimes you just don’t realize that sitting and resting like a “normal” is actually really hard work and takes spoons just as much as walking or trying to do something. Yes, I will need to lay down and rest just as much from sitting and doing “nothing” than I would walking and trying to do “something” , and sometimes it will actually take sleep to recover and I will be absolutely wiped out the next day from doing a lot of it. Sitting and watching a movie feels like I’ve just run a 5k.

And yes spoons aren’t automatically replenished in the morning. You have to earn them back by resting. Some days you only earn back 3 spoons. And finally no, I didn’t ask to be this way, no I don’t like it, yes if I had to choose I wouldn’t do this over again, and yes, I will try to make the absolute best of things that I can.

-Dawn Marie G-

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