Here's something I'm struggling with: When people think I should do more to see them or, now that we aren't in the same state, I should do more to contact them. I try to reiterate what fibromyalgia is like and what I go through. I might not have the energy to lift my head, much less hold a conversation on the phone. I might be saving my energy to not trip over my cat and to make meals. I don't have energy to spend on driving to and fro and I don't have energy to hold a conversation. That's only one aspect of the condition. Mental fogginess means everything coming my way is too much for me to handle. I miss a lot of seemingly simple statements (verbal or visual statements). This is often taken as something else, confusion is often taken personally. Then there is the pain throughout all of the above. If it isn't pain then my muscles work like an odd mush of wanting to work but being too tired to.
This week was spent writhing in pain. I try to be normal and happy throughout the painful days, but notice that I am not married. My ex husband couldn't handle it. For some reason, happiness said I'm all better.
Why is it okay to stress me out with something that is thought to exude a welcoming want by saying I need to reach out more and do so in a guiltfull way? Do you guys really want to see me screaming and crying, though mostly sitting with a look of defeat on my face? It chases people away. It brings about a reality you don't expect. Then you need time, apparently a lot of time for some, to grasp what's going on with me, and for some reason some people completely forget that I have a disabling condition and they seem surprised it's all still happening. Now we're back full circle in this post.
Sort of a side note, I learned last week that the clinic I picked as my managed care plan doesn't treat pain. Then what's the point? So I left still in pain and I will have to be in pain for a couple more weeks. The lyrica stopped taking the pain away and now it just makes me sleepy. And today I have a migraine and nothing to take for it. I doubled up on the caffeine, but it's still there. Now I'm wiggling inside with energy but it hurts to move my head. It also hurts to keep my head still. (This post was written a few days ago and I was in too much pain to edit for publishing...I can't write this well when I am in pain.)
I "get" that it's hard to grasp. If you don't know it then you don't know what to expect, you don't know what will occur and if you don't live it daily you will forget what takes place. How, then, do I cope with people trying to guilt me into feeling bad for not contacting them and how do I cope with people that think I'm fine and, finally, how do I cope with people that think I'm not doing enough? I do everything I can to feel good and if I can't feel good then I have to practice understanding that I won't feel good despite my best attempts and I have to be okay with not feeling well in whatever way the day has in store for me. This is a lot of work. Imagine doing all of this in one day or in 10 minutes. Think about muscles not working, you want to reach your arm out for a glass of water, but your arm doesn't move. You realize your arm feels too heavy to lift. Now you have to focus all of your attention on gaining energy to move your arm to get the glass of water, but wait, you need energy to not spill it as you bring it to you (this is one reason I drink from water bottles), then you need energy to swallow the liquid and you need energy to not dribble down your chin. So you're trying not to choke while you're trying to keep the beverage from leaving your mouth the wrong way, after all, you want to take a drink, not to spit water. Now you need those arm, forearm and hand muscles all to work to get the glass back to its resting place. Then imagine you have a pain in your back while you're trying to do this seemingly simple task of taking a drink of water. There is a muscle spasming and it hurts so your reflex is to say ouch and kind of arch back and maybe bring an elbow back all in an effort to shorten the muscle so it will stop with the spasm. But the spasm doesn't stop and neither does the pain. Now you have a glass of water in your had, you don't know where the energy came from to hold it up and only water is spilled on you as you wrench back while trying to remember to breathe through the pain instead of hold the breath. That's just one explanation of what I go through among maybe hundreds or maybe thousands, I just don't know...I don't want to count it all.
When my skin feels a sensation, it doesn't stop. It lasts from minutes to hours. I also noticed and relearned last week when I had acupuncture that my body repeats painful sensations and it adds the sensation to other areas that did not receive the stimulus. When we left the clinic, I could feel the needle going into my skin all over my body when there were less than 10 needles placed in me and I know where they were placed. The brain isn't supposed to remember pain so why does this happen? Why did I feel like I was being stuck with acupuncture needles in my shoulders (among all the other areas)?
To sum it all up, People need to learn how to not own someone else's issues. We cannot protect ourselves from challenges and we can't protect situations from being bad -"bad" is different for each person because the idea, the picture in our head, is not going to be the same as anyone else's, think of the brain like the snowflake...no two are alike. Instead of wanting things to happen as you picture them, sit back and watch things as they come, breathe and don't focus too much on your own actions, reactions and interactions. Instead, focus on other people and how they dance with you in the situation. Teach yourself how to look at situations as if they are interesting instead of thinking about how they are some how in your way. If someone is interacting with you then you must be doing something right.
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