Making Plans is Hard To Do

My first draft of this post seemed a little whiny to me, so we shall see if I can write this out how I had originally thought about it.

Living with a chronic illness is hard, and life changing. Suddenly, life revolves around how much pain your in and how many spoons* you have that day.

If I am making plans with a friend a week in advance, I am already worrying about whether or not I will actually be able to follow through with those plans.

Most of the time, I cannot.

Even if the plan is a phone conversation. You wouldn't really think it does, but phone calls use energy. Being there emotionally and mentally requires a lot and can actually be really draining some days.

Because of these things, I feel like I am the world's worst friend. I constantly canceling plans and don't always return texts (but that is a whole other thing I will talk about another time called 'fibro fog').


The thing I was most nervous about going to China was, that there were required  things that I would have to do, regardless of how I felt that day. I brought my cane, which I used often, and my wheelchair, which I should have used more often. I did alright. I made some really good friends who were on the tour as well, and they were all very understanding, which was a huge blessing. I don't believe myself half the time, why would other people?


I'm not really sure what the point of this post is, but like, can we just all believe and love each other? I've recently joined Tumblr and have connected with a huge community of people who are chronically ill. It's been amazing being able to realize that I am not the only one going through this, even though it feels like it often. Another thing I have learned because of this amazing community is that there are so many people who aren't believed. There are doctors who tell chronically ill patients that their pain is in their head and isn't real. Trust me when I say it IS REAL. I legit wish my pain was all in my head. There are people every day who are told to "just try yoga" or a bunch of other things that, guess what? Chance are, they've already tried it.

What able-bodied people don't understand is that going and doing things anyways and just "toughening up" isn't going to make me better and stronger. It's going to make me worse. Doctors tell me to work out, but what happens when I am in too much pain and am too fatigued to? It is really just a giant mess.

It doesn't help that there isn't much research in the way of chronic pain and fatigue. Fibromyalgia is only recently being acknowledged as an actual illness. More women than men have Fibromyalgia. Women would go to their doctors, explain what was going on, and the doctors would brush it off as psychological. For DECADES women have been told their pain is not real. I am so glad I have a good doctor who recognized my pain as real and that I didn't have to go through what so many of my fellow spoonies have gone through.


I encourage EVERYONE to look up the documentary Unrest. It is AMAZING at showing some of the things that happen behind closed doors, to better understand what it is like living with these awful illnesses.




Last note. I'm not sharing my experiences because I "owe it" to other people. My illness is no ones business but mine and my husband's. I am sharing because I feel that by doing so, I might be able to help educate those around me. In addition, I might be able to help someone else. Also, I mentioned how there are people that tell those who are chronically ill to just try yoga. It's a thing that happens alllllll the time. This goes for ANY unsolicited medical advice. If you are not a medical professional, that the person has asked for advice, don't give it. It is well meaning but it's not that simple. Please mind your own business.
(THAT IS NOT POINTED AT ANYONE!!! If you have done this in the past, please don't feel bad, just learn and make different decisions).

here is a photo of the first time I went rock climbing with my husband (4-7-16)


xx









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