So, how in the hell are we supposed to explain to our loved ones just how sick we are, if we cannot think of the words to describe it all? FMS is widespread pain. Other people go to the doctor and they point at the chart and asks us to give them a number between one and ten for their pain. They get to do that. For example, “my tummy is an 8” or “My broken arm is a 7”.
FMS warriors ask themselves.. “which pain?” Because our whole body hurts. I told my doctor that we should change it to “How bad does it all suck today?” and he agreed. I know that we get frustrated with our docs, and trust me, they are just as frustrated as we are.
What does it really feel like, every single day, to have fibromyalgia? Millions of us suffer from it. American doctors still want to tell us that it is caused by depression; this is incorrect in the extreme. That is for another post though, this one is about what it is really like.
First of all, we wake up. If we have slept at all; insomnia is one of the main issues with fibromyalgia. I will switch now to what it is like for me, because this is the one that I know the best.
After waking I take inventory of all my bits. I figure out if standing up is going to be a good plan at this point. If standing seems possible I force myself to an upright position.
When my children are at home I feed off of their energy and before I even have a chance to think about being calm I am bombarded with TESTOSTERONE and angst. I have learned that when they are here, I must be extra careful and I MUST speak up about the things that displease me. If they want to get mad, they can go to their rooms. I am the one suffering here, I don’t ask them for much, but if they want to pull some teenage douche-baggery I will insist they go away from me to do that.
Long ago I stopped feeling guilty for being a “sick mom” because I figured out that I am their mom. I have to deal with what I have, and as long as I try that is all my husband and sons want. Guilt is a huge part of this process and that means that we are not being fair to ourselves. Love the new you, and those around you will do the same.
Okay, back to after I wake up. I make my coffee. This is an issue for several reasons. First, my arms are all strange and numb and they don’t want to listen to my brain; and second those damn filters are almost impossible to pull apart. I have cried only twice.. but it is so frustrating when all you want is your coffee and you can’t even get a filter out.
If I manage to get a filter and I don’t break the carafe the coffee is done and I take my morning pills. I go to smoke my morning cigarette and play Puzzles and Dragons on my phone until I feel like I can check all my bits again. Oh, go ahead and judge me for smoking cigarettes. I have tried to quit. I won’t give any excuses; I keep failing to quit.
Now, this morning I woke up with an interesting new pain. In both of my hips. I walk a little bit like I am stuck to a chair and trying to walk.. that is the shape that I am in when I am walking. Hey, maybe if I did glue a seat to my ass I would be able to rest easier. Obviously, that was my sad attempt at humor.
Now, my legs and feet are very similar to my hands and arms. They feel like they are asleep and if I don’t watch them when I am walking they cannot be trusted and like my arms which also cannot be trusted seem to have a mind of their own and they must be watched carefully.
If I don’t intensely concentrate on the task I am doing it would be a disaster. I am not talking higher mathematics or physics here, just my arms and hands; my legs and my feet. If I don’t concentrate I will go down, I will knock things all over the place. I am HULK SMASH if a bug lands on me and I didn’t see it coming.
I startle very easily, like a deer in the woods. If I could actually walk, I would be kick ass if the zombie apocalypse comes… alas, in my current condition, I shall be the distraction food so the others can get away.
I accept this. I am okay with the fact that for some reason I am one in over a million people that have this life stealing disorder. I encourage readers of my blog to tell people they have a neurological disorder. This is not a lie. When I tell people I have fibromyalgia they immediately tune out.
Screw that mess, neurological condition, and then they will try to help you instead of looking at you like you are out of your ever-loving mind.
The hardest part, for me, was grieving for the life I used to have. I was a dancer, I was healthy, I was a retail manager, I was thin and in shape. Then one day I noticed that my arms were getting tired very quickly when I held them up for too long. Then I started to get shooting pains in my back that were so extreme I would call out and fall down. Then I started doing the fibromyalgia shuffle walk. It was not long before I had to quit my job.
I thought I would be fine. I thought that I could sell my jewelry that I was making, the purses I was sewing, or the bracelets that I was making. Then my hands went numb.
I lost the ability to do every single thing I loved. I grieved those losses. Like any loss, though, one must pick oneself up and brush off the dirt and using baby steps get to know the new person that has developed as a result of fibromyalgia.
Do not get me wrong here, I grieve all the time for the things I no longer have. However I only let myself have a few minutes of that before I force myself to write.. create some earrings (which I can do), or walk my spiritual path, or play puzzles on my phone, or binge watch a silly show on Hulu or Netflix. I do not recommend the last one, it doesn’t help the brain exercise like other things you could do. Don’t get me wrong, I watch a lot of both. Some days you just have to disconnect.
I can’t cook myself lunch, because I will forget that I am cooking something and ruin it. I also have to be very careful of what I eat when here alone because swallowing is very difficult. All part of the melange of things that are FMS.
I have gotten vertigo twice. When people talked to me years ago about vertigo I didn’t get it. I thought, so you get dizzy… I get dizzy if I spin, what is the big deal? Well, I can tell you it is life altering. The entire universe slips sideways and upside down. It feels like you are rolling down the hill in a barrel, except you are laying on the floor.
It has caused me to be afraid to drive or even go out alone, lest it happen and people panic and call an ambulance, or Goddess help me, I get into a car wreck because I break and can no longer operate a vehicle..
If you are a warrior and you are fighting these battles, you must find your new purpose. Getting to know yourself in your new body is the first step. Today, for example, I know the hip pain is new and I am having shooting pains in my back, they are so intense I yell out. My kid is here because of the snow.. he knows that when I yell HELP that I need a person. If my noises are eek, ouch, shit, or any other number of phrases; he knows that I do not need assistance, as it is only a pain from nowhere.
Every single thing is a challenge. Taking a shower is a challenge. My ears ringing for four years straight… challenge. Falling all the time.. well I know those are coming so I mostly make it down slowly. Getting back up can be a challenge, because my arms are as sore as my legs, there is nowhere someone can grab me to help me up that doesn’t hurt. I roll with it now. I cannot change it, I must make the best of things.
My mental state is a challenge and controlling the urge to scream and rant all day comes with a price. This condition causes you to concentrate on not letting yourself feel the war that you are waging with your own body. When the kids get home and bombard me with questions, or complaints about their days I shut down almost right away.
It is like a tidal wave of information and my brain just says NOPE. My kids are older and understand that when I grab the bridge of my nose it means to slow down, that I am thinking. I don’t know how to help those with younger children.. but you have to work and figure it out. I did and it helps a lot.
Do I cry and want to give up? I had one of those days yesterday. I thought I was a drain of resources that should go to the healthy people in my family. It makes my husband really mad when I say that out loud. I am finding my worth, that is a challenge as well. Finding my worth here and in the outside world, no matter what, that is essential to my growth.
Finally, connecting to the earth’s energy. Aligning my chakras daily and meditating. All of these things are a challenge, but what is the worst that can happen? I promise you this works. It is how I slowed down. Reiki, and grounding myself as often as I can.
I am already in pain all the time.. I take baby steps and remember, always remember, that I am worth something. I can help people. I have a husband that loves me in spite of all my crazy and two amazing kids.
Following is what I wrote when I was flaring really hard. In my own words, in the middle of a flare I wrote this. Please, let your loved ones read this as well.
Inside the Mind of me.. right now
I write this with great speed, because I shall lose my train of thought any second. Inside my brain, right now.. I reset every 30 seconds or so. It is like a bad acid trip all the time.
My skin burns, and I wonder at the fact that it doesn’t feel hot to the touch. I wonder if I just stepped in piss or if the tempurature is different because my hands and feet are numb.
Typing is impossible. Thinking is impossible. I must rest for the game later. I know I am not doing my homework and I cannot bring myself to care long enough to push myself through. I remember that I forgot.. Then I remember that I am forgetting, then it starts back over in my head.
Shaking hands, quickly now.. before it is too late and I have done a master re-boot. I wonder if I get tasered.. I wonder if it is that simple
Living your best life. fighting the darkness.. fight on.. live to fight another day. Wonder of wonders.. I tried it.. You cannot stop the darkness.. You learn to live the darkness, balance the darkness. No rest, no sleep.. we fight.
Wait.. hang on.. what was I just saying?