Hello warriors. I think this is a post that I have been waiting a long time to write. I have a lot of things to say that are pertinent whether or not you have Fibromyalgia (FMS).
First of all I have a story to tell. My whole life I have been worried what people thought. Even when I said I didn’t care, I was able to hide the fact that I cared, but I still cared very much, so much that it would almost be the only thing I would think about for a while.
After the FMS got so bad I was so fucking hurt because everyone who was supposed to love me thought I was insane, or faking, or just being lazy. It killed me that people thought that. I would spend days wondering why.
Why won’t my mom help me get to the doctor? Why are they saying all these awful things about me?
I found that this is a total waste of time, and you are going to be sad because of what someone else thinks?
NOPE… WRONG, you have a disorder that has stolen your life. It cannot be understated how devastating it is to lose your ability to do nearly everything you loved.
No one will understand this, except for someone who has been through it. FMS is a special case because there are so many things that people simply cannot understand, hell I can’t make any sense of it.
Whether you are sick or not it does absolutely NO good at all to worry what others think. It is a process to get to a place where you truly don’t care, but I am 38.. it took me this long.. I had an amazing experience yesterday that taught me better.
We went shopping at Walmart, which is a trial when you have FMS. I had a great time. I thought I would have to use the auto-cart that you ride around, but I made it.
When I speak about the zombie couple at Walmart that just look like they are miserable nearly everyone should know what I mean. It is chaos in the store and they were with two small children. Their little girl still had her Hallows Eve costume on. She was wearing a bright blue wig. I should post a picture of me here…
This is what I look like from the back. Of course, yesterday I was a bit less…. fluffy…. however, I have baby dreads and they are a mess most of the time. I have some wrapped and it is a colorful mess and I love it.
This pertains to the couple in Walmart because when I walked by I said “I want blue hair”. They turned to look at me, I could see out of the corner of my eye. They were miserable.
I passed them and they turned to look at me and saw MY hair. They started laughing at me, really loudly. Not giggling, laughing and leaning on each other and having a beautiful, unexpected moment together because they were making fun of me.
I waited for the pain. That pain that I used to push way back, yet still obsess over. I waited and it never happened. I smiled. I thought it was amazing that they were laughing together. I didn’t care one whit, for the first time in 38 years, that they were making fun of me.
They were making fun.. those are the words I took from it. They were laughing with one another. Sharing a moment. I am so happy that I was the catalyst for that. Oh yeah, and by that time I was doing the FMS shuffle walk… I will have that video posted here later, my version of the “shuffle”.
One of the first things I learned about FMS was that it changes how you interact with people. It changes the way that you speak, because words can be so hard.
If this happens, simply say bear with me, I have a neurological condition. (1) it isn’t a lie and (2) if you say fibromyalgia people automatically ignore your issues, they just do; it is a shitty word. I have tried this several times and it works like a charm.
Now, love who you are. Replace words if you feel like it, with other similar ones. Just become yourself. Stop hiding behind FMS.. start to live.. get to know yourself again.
The new self.. The one that you are now. So, you lost the ability to do some shit.. there are a million other things that you can do.. you push yourself. If you fail.. that wasn’t your thing. Simple as that.. Move on to the next thing.
Cry whenever you want. Not every day, but during this process you are going to fail and you are going to be sad and you are maybe going to cry because it is frustrating as all hell.. But you can do it.
Don’t think about what hurts, unless it is knocking you to the floor. If you do go down, do it slowly and laugh at yourself.
Don’t wonder “is that the fibro or am I dying?” because YES it is the FMS and that isn’t your focus anymore.. your focus is you.. stepping out of the box you have yourself in.
You will still have things you cannot do. My goal is not to cure you, that is impossible. My goal is to help you understand you don’t need that box.
I have told my family that I am no longer going to be the pushover I was. I was allowing my son to run roughshod over me because I didn’t want to fight and get upset. Unfortunately for him, those days are done. That is my most recent step up.
I have made some stuff. Earrings.. Necklace. I thought that was gone, The ability to make them, and even though it takes me 3 times as long as it used to and it hurts like hell.. I do it because I have pain anyway and it makes me happy.
Now, I shall have to speak of the cost of becoming yourself. Most people develop their sense of self in relation to what others think. It is science, it is how we form our schemas of ourselves and those are hard to take apart.
That said, that isn’t even the cost. For me the cost was extended family turning away from me, refusing to speak to me. I don’t miss them. I never really did. However, that can be too steep a price for some people.
I do wish that they would come see my son be the drum major for his whole band at high school. Or come see the amazing mechanical work that my other son is able to do. Or maybe come to the Sherlock play, where my kid is cast as Moriarty. I am the one they don’t like, they should never take that out on my boys.
Yeah, the one in charge? That is my kid.
Don’t let FMS make you scared to be yourself. I have dread locks and I openly act in the marijuana reform movement. I am broke most of the time, and I have this shit that makes it so I walk fine for a few minutes, then everything goes all to hell.
This reminds me of the “stop-watch” thing I do. If I am going somewhere I have to time my meds of course. I also have to TRY and figure how much time I have before my legs give out completely.
This is impossible. I have tried for years. There is no set time. There is no watch and there is no way to know when everything is going to go all to shit. What really sucks is when my legs and arms go at the same time, it makes it tough to get back up.
One last FMS thing that I thought about.. Words are as exhausting as running up a hill. I think this might be on the hardest things for people to understand. If you have an argument with me, it is as bad.. or worse… than if I was doing a marathon.
When I go to plays and music things, while I wait in my seat I listen to music on my phone, clearly ignoring everyone. That way I am not done in before my kid even gets on stage. Don’t ever be afraid to live your best life, no matter what your new version is, don’t be afraid to live it.
FMS takes your life. It steals it. You are forced to forge a new one. It will be one of the hardest things you have ever done. You don’t need the haters to understand, you just work on you. Live your life, love your life, it can still be a great one.