Concrete Shoes.

Today was one of those days they warn you about. In the weave of the ebb of flow of good and bad days.. today was bad. I know I am not allowed to post a depressing post...but I consider this more cathartic and informative. I know what a toy who is on the verge of having their batteries die - feels like. It is a sickening feeling like your spirit is draining out of you - a kin to what a draining waterbed would feel like. I have been lucky the past few weeks because the pain has taken a back seat - due to the meds. But the funny thing with Fibromyalgia is it is not predictable. Today my number was up but by luck I had a prescheduled drs appointment...and so a comfy B12 shot was waiting for me.

I was looking up Fibromyalgia on the internet and read what it feels like to have it. The basic description for the pain was it feels like you have a bad case of the flu all the time, or how you feel the day after an intense workout. They add some more information about how fibro can cause a burning sensation and how depression can onset because your not getting restorative sleep and your depleting serotonin levels. It also mentions most of us are sensitive to light, (check), sensitive to medications, (check), restless leg syndrome (this is where you feel like you have to move your legs a lot it is annoying like your legs are asleep but you feel all the sensations), (check), and the most fun of all Fibro Fog, (When you can't remember or recall simple things you should know but don't), (double check).

I like to describe the pain symptoms as being dipped in concrete and then set on fire with a blow torch. As I have mentioned before the meds to treat it can be as bad as the pain.. anti-depressants.. yuck! Although compared to someone who is on them for depression I take a micro dose. Yet I get to experience all the joy of the side effects: moodiness, extreme emotional outbursts, and yes depression! Why would a pill that is used to treat depression cause depression?!?

As for the other things I can cope, I always wear sunglasses so I can actually see, I don't like taking meds so it usually doesn’t effect me, I have cut down in salt which has reduced the restless leg syndrome. The Fibro Fog can get pretty bad especially when I get so sleep deprived... other than writing cue cards for the stupid things I forget I have not coped with that one.. of course if I could remember what to write I would not need the cue cards, would I?

The thing I hate is the lack of understanding and compassion.. most people view this as an imaginary problem kind of like hypochondriac plot. Some people with Fibro are so devastated by this illness they cannot work or function. When I went through my first long bout with this illness I was working a full time job, part time job, going to school full time, and I was a single parent... yet people still though I was weak because I would struggle getting up out of a chair, I couldn’t open up a bag, or hold my pencil correctly, or had trouble typing. I learned to toughen up, I stopped talking about my pain and difficulties, I would force myself to move with ease no matter how badly it hurt, I would often cry all the way home because the pain was so intense, and I could bluff well, and I can still intimidate walking down the hall and fake the bad ass attitude. Although I admit it is getting harder with each passing year to maintain this facade.

The second is the fact I am usually a lot younger than most people diagnosed with Fibro.. I am only 32 I was diagnosed at 25 after my son was born.. I have had it long than that probably born with it because I always remember the pain that shoots down my legs. People look at me and don’t understand how someone so young can have so many problems.. I try to tell them they are all related and all from the same cause but the illness is so new there is no pinpoint cause or cure.

The third is sometimes I feel robbed.. I should be in the prime of my life and I feel like it has come and gone and left me on the side of the road going "huh?". I try not to engage in self-pity many people in this life have it worse than I. I am lucky to have a wonderful and compassionate husband who really tries to understand and help me out, but he still will never understand what I am going though, only someone who has this understands this.. I have two beautiful children.. don't know if I will make it to have number 3 especially when numbers one and twos pregnancy is still way too fresh in my mind!! My son is becoming a compassionate, loving, and caring child.. Although only 6 yrs old he does his best to support and encourage his mama....(side note.. there is something left on a sons personality when he has a close strong relationship with his mother.. I can usually tell the men who are raised by their mothers because their is something special about them.. they are the passionate, compassionate, and usually stubborn as all hell people of the world.. it just so happens my hubby is one of those people too.. and I am proud my son it following his footsteps..) As I have said I have it easier this time I have a partner and I am not alone.. I also have a very close friend who is going through the same thing. .. she has fibro and lupus... so she understands.. it also helps she is my boss so when one of those bad days rears its ugly head so knows how to deal with me!

My greatest fear is that my children get this illness.. although not common in boys/men it can happen.. my daughter is still a young toddler so she is too young to have these aliments. There is no evidence that Fibro is genetic the running theory is a virus or trauma that triggers the aliment.

I found a poem that is the closest to a good description of what my so called life can be like:

MY NAME IS FIBROMYALGIA by Terri BeenHi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day. Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or" Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next !In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.

Of course the pain of the day can sometimes be erased by an event like my baby girls smile or like today her first kiss and wave goodbye.. all the more reason to keep fighting like hell and show this disease who is boss!