A Letter From Fibromyalgia

A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,

Hi, 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 anyway I please. I can cause severe pain, or if I am 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. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)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 quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those 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 ‘ROFL’ (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. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single 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 them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used 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, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

Have a nice day!! (ROFL),

Fibromyalgia

My little cutie :)

Good News!

Soooooo I have some good news. I don't need surgery on my knee! It looks like it's just a minor tear that should heal on its own. I do need physical therapy, but that's nothing compared to needing surgery! And my MRI looked good, so that's a positive thing too. Thank God! I am SO relieved! I was so scared and so stressed and just ahhh! It's about time I finally get some good news!

That's really all I have to say today, just wanted everyone to know the good news! :)

One Thing After Another....

Wow, I haven't actually updated this in SO long. I feel like it has just become more of a chore than an enjoyment. I don't know why, it just seems that way. It's weird really, because when I first started this thing, I absolutely loved it and used it all the time.

Anyways, I left off right before Christmas. Dan and I went to my parents' house for Christmas, which was nice. It didn't feel nearly as much like Christmas as it usually does, and I think its just because I am growing up, and while Christmas is still nice of course, it just isn't the same as when I was younger.

While I was there, I started having some extreme pain in the left side of my face, which I thought was my trigeminal neuralgia flaring. It was beyond painful, and NOTHING got rid of it. I actually ended up in the ER once because the pain was just THAT bad, and they gave me hydromorphone (which is like synthetic morphine) and even that didn't work, that's how bad it was. After like a week or two of being in pain, it was finally discovered that it was actually TMJ, and that it was setting off my trigeminal neuralgia as well. My doctor put me on short-term prednisone (which made me soooo sick) but calmed it down, and it's been better since, thankfully. That was such bad pain.

So a little bit more time goes by, and I'm feeling horrible, so exhausted, sick feeling, etc. I thought it was just the fibro acting up, so I just let it be for awhile. But it got worse, and got to the point where I knew it was more then just fibro, so back to the doctor I go. Turns out I had gotten mono somewhere along the line. That was just wonderful. Let me tell you, fibro plus mono is absolutely horrible. I have never felt so exhausted or so sick in my whole life. It was so intense. Actually, I think I still have a bout of it, but I do believe that it is getting at least a bit better. While I'm def still tired, it's not as bad as it was.

Sooo there's that. But then this past Friday, I fell on the ice in my driveway on my bad knee (the one I hurt back in August). The pain was so bad. I ended up going to the Brighton FirstCare on Saturday night because the pain was just so intense and I knew something must be wrong. So they referred me to an orthopedic doctor who I saw yesterday. He thinks I might have torn *insert medical jargon here.* I don't know what exactly it was. But anyways, I have an MRI next Wednesday to figure out what exactly is wrong, and then we will see what needs to be done. I may need surgery or I may not, we don't know yet. In the meantime, I'm in a knee immobilizer and am supposed to be using crutches if I'm gonna be on it alot. Oh fun.

Oh and I have a cold now too.

So this is my life....see what I mean when I say it's one thing after another?

Butterfly (She Flies Alone) by Journey

She never knew the meaning of the word
Or ever heard or felt of freedom
All she knew was looking out from windows
Streaked with her own tears and her own shadows
Within a cage, tried to escape
The silent rage
Cause no one ever listened
Behind her back, she's both wings tied
She will break free
She will not be denied

And so she
She flies alone
High into the great unknown
And no one there to tell her where to go
So she flies
Sweet butterfly

Counting every second, minutes turn to hours
Seems like years
The wait's eternal
Finally passed the point of all lost hope
She will break free
She will not be denied, oh no

And so she
She flies alone
High into the great unknown
And no one there to tell her where to go
So she flies
Like a butterfly, oh
Yeah

Within a cage
Tried to escape the silent rage
But no one ever listened
Behind her back
She's both wings tied
She will break free
She will not be denied

So she
She flies alone
High into the great unknown
She don't need me to tell her where to go
Sweet little butterfly

So she
She flies alone
Up into the great unknown
She don't need me to tell her where she goes
So she flies

Within a cage
Tried to escape the silent rage
Where no one ever listened
Behind her back
She's both wings tied
She will break free
She will break free
Sweet butterfly

Fibro Feelings

How Does FMS Make Me Feel?

From: http://oldghostshome.com/fibro.html

My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

My intolerance - I can't stand heat, either. Or humidity. If I am a man, I may sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.

My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.

My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

(I thought this was great and worth sharing!)

Seasonal Life

Well, life is just the same really. I don't usually know what the difference is to be honest with you. I'm not even sure what I'm saying, so disregard these sentences.

I'm currently in Massachusetts until tomorrow. We came down for Hanukkah, so here we are. It's been nice...a little mini-vacation is always a plus. I've been so stressed out lately and so its needed I suppose. I'm not even really sure what's been wrong, I've just been really depressed and whatnot. And so has Dan, so that makes it even worse. When we both get upset, things just get even more magnified and worse.

Work has been a pain lately too. Only really because it's Christmas season and the place is absolutely insane. It's wearing and exhausting. As far as work goes, I really can't wait for the season to be over. Although, I will get less hours and the paychecks won't be as good...so that part sucks, but Idk. It's just a stressful situation.

I really can't wait to go home for Christmas. I haven't been to Eastport since July, and for some reason, I feel a bit homesick. Probably just because it's Christmastime, and it never really feels like it until I go home. Idk. Hard to figure out really.

My life....is...well, interesting right now I guess. I wonder if I really do have Seasonal Affective Disorder as well. Beats me, but what I do know right now is that I'm not feeling the best. Physically or emotionally. And of course, we all know that the two are related.

Well, just a short update. <3