Tuesday, October 30, 2012
Yes, I know I'm young and I look fine. I am not.
Just cause you can't see it, doesn't mean it isn't real. Even though I can't show you Diabetes, you'd believe me if I said I didn't feel well. Fibromyalgia is no different. I could never show you the pain I'm in. I wish I could. If you lived one of my days, you'd cry for me. Today is one of those days. I wouldn't wish Fibro on my worst enemy. I'm having the worst flare up known to mankind. I can't believe there's pain like this that even exists It's unreal. I have four children. That process hurt. Not like this. I've never cried from pain before. I was silent when I gave birth all four times. I took that pain inward and was able to deal with it. I can't deal with this. Fibro pain is like nothing you've felt before. I can try to describe it. It's the flu, pregnancy, plus chronic fatigue on top of it all. Oh, and like you just went hiking Everest. Yes, deep muscle aches, dizziness, nausea, headaches, (I get Cluster Headaches, the worst kind you can get) um, what else? Oh, serious memory loss. This is called "Fibro Fog." It sucks, too. You can be talking on your phone and have no idea where your phone is. You could be looking for half an hour before you realize you're talking on it. It makes ya seriously fartsy. Joint pain, dry eyes, periods from Satan himself, mmm, yes, I'm having to Google my own symptoms because of Fibro Fog. Okay, Web MD also says IBS, sleep disturbances, anxiety and depression. I sleep walk like nobody's business. I climb through windows, I sleep talk, I've tried killing my husband in my sleep, (I thought I was Batman. I can't watch anything too motivating, lest I wake to a mutilated hubby) yes, I've had sex with him in my sleep, too. I walk to different parts of my house, and I'm always trying to keep invaders out of my house, no matter what means are necessary. I wake feeling exhausted. All. The. Time. I can sleep for 3 hours or 12. Doesn't matter. I'll be tired. Naps don't help. They sure feel good though, cause all I want to do is sleep. I forget the task I'm working on. I forget what we're talking about in a conversation. I cry, I'm sad, but mostly, I hurt. I was diagnosed with Fibromyalgia three years ago. Funny story. It takes people with Fibro an average of ten years before they get diagnosed. Doctors can't find anything, (it truly is an invisible disease) and some think it's in your head. Hence the ten year wait for a proper diagnosis. Mine only took months. I first saw my doctor because something didn't "feel right." I've been feeling a lot of these symptoms since I was a girl. It got seriously out of control three years ago, though. Before, I was told I was lazy, stupid and a hypochondriac. By friends, and yes, family, too. I believed them. If I ignored it and just worked harder, I'd prove them wrong. Didn't work. You can only do as much as your body will let you do. I finally fessed up to it; I DO have something wrong with me. I went into my doctor's office and gave her all my symptoms. I can't even begin to tell you all the tests we ran. All of 'em. I was checked for every auto-immune disease, Diabetes, cancer, heart conditions, blood conditions, I did an MRI, had a Hepatitis screening, had ALL x-rays done. I saw specialists up to three times a week, for three months straight. Nothing. Negative. When you're sick, and you know you're sick, you kind of hope you'll fail one of those dang tests. You just want answers. You want to start working on the cure, or at least the treatment. With Fibromyalgia, you never get that satisfaction. Finally, my doctor said, "ya know, Rachelle, I really think you have Fibromyalgia." I laughed. Fibromyalgia is a "waste-basket" condition. That's what you're diagnosed with when they just can't find anything else wrong with you. It's made up and it doesn't exist. I smirked as I took home my Tramodol and Cymbalta samples. "Honey, she thinks I have Fibromyalgia!" We both had a good laugh. She was a pain specialist. Yes, I failed the "tender point" test. I wish I would have listened to her. More than anything, I was mad she was being lazy. I KNEW there was something wrong with me. Something I could fail and she wasn't willing to find it. She was giving up on me like everyone else. I was convinced she thought it was all in my head. I knew something was wrong. Completely exhausted from my efforts, I gave up. I just didn't feel well. That's all there was to it. I guess I really was just lazy. Things became worse and worse. I couldn't get up in the morning. Washing my hair was making me breath very hard and exhausting me like I just ran a marathon. Taking a shower is a chore. I was spending less and less time with my kids, with them always saying, "yeah, I know. You don't feel well." The guilt was getting unbearable. Ok, so what if I was lazy? I could change that if I really set my mind to it. No, I couldn't. The days I told myself it was all in my head, I'd end up in bed for days dealing with unbearable pain. Two and a half years later, I finally began to wonder if my doctor had been telling me the truth. She had closed her practice so I hadn't seen her since my diagnosis. I began to Google Fibromyalgia symptoms. Had them all. I cried. I literally cried for hours. At the end, it always says no cure and no known treatment. Certain medications can help some symptoms but will not treat them. There are currently no ways to prove Fibromyalgia, either. It's only based on the patient's symptoms. Are you kidding me? Everyone thinks this is in my head as it is and there's no tests to prove it? No cure, no treatment? Are you freaking kidding me? I cried even harder. Then, the depression set in. This is for life? I won't get to play with my kids like I want to? I won't get to do all the stuff kids my age are doing? I am only 26 years old. This was my death sentence. I am OCD and have a type A personality. I do things myself. I am very prideful, I do not like asking for help. This was a death sentence. The days I have to ask my husband to tie my shoes are humiliating. I won't even talk about the times he's had to wash my hair. He cooks all the meals, cleans the house, and takes on all parental responsibilities when he can. I'm truly blessed. It doesn't help me feel any less crappier, though. I love him. He's my best friend. I WANT to do it myself! How long can he take care of a disabled person before it completely wears him out and he can't handle it anymore? I fear I'll burn him out. I know I cannot take care of myself. I know I couldn't lose him. It's a bad feeling. My husband has Type One Diabetes (an auto-immune disease he got at age 14.) He totally get's how a disease can make you lose control over your body. Through no fault or choice of your own, your body can turn on you in seconds and become your worst enemy. I'm grateful for his empathy. Many of my Fibromite sisters do not have that luxury. It's not one I take for granted. He is my savior, my guardian angel, and yes, I do believe God created him just for me. I'm older by two months, that's how I know he was created for me. ;) Which sometimes, I think makes my guilt even worse. He's perfect, he deserves better. He deserves someone healthy, a partner, not a leech. It's not fair. My kids deserve a better mother. I don't know how to be that for them. I try, I honestly try. I can usually only be a bystander, though. A bystander of my own life. I'm watching it pass me by. Watching it with regret, self-pity, (yeah, I won't deny it!) fear, and a complete hatred for this wretched condition. It's a hard one to bear. I've told my husband I'm so incredibly jealous of his disease. Diabetes sucks, yes, don't get me wrong, but as long as he's pro-active, he gets to treat it and live a normal life. I will never get to do that. Ever. Knowing this scares me and makes me cry every time I have to face that fact. No, you can't die from Fibro, and no, it's not going to get worse. People say I should be grateful I have my limbs, that I'm not dying of cancer and yes, they're right. I am grateful. This is my burden, though. I will not downplay it or pretend it doesn't suck. There are days the depression, guilt and yes, of course pain are so severe, I do wish for death. Sometimes I wish for death so my husband wouldn't have to take care of me, my kids wouldn't ever be disappointed in me, and most especially, that I wouldn't have to deal with the pain anymore. I keep on surviving, though. What choice do we have? Fibromites are without a doubt, the most courageous women (and men!) I've ever met. I don't say that for me, because I don't feel I am. I do feel it's a courageous thing to undertake, though. It's a monster. This is not for the weak. I do believe God, as promised in the scriptures, won't give us any more than we can handle. I was born to a pedophile, and of course, abused by him, sexually and physically, as well as from other relatives. So much mental abuse, let me add. It didn't end until I married my savior at eighteen. When I realized I had Fibo, I couldn't believe God would give this to me after all I had been through. Yes, I was mad at him. I couldn't believe it. Abused from birth until 18 and now this? Really??? It didn't seem fair. So when I say God doesn't give us more than we can handle, I will say Fibromites are some of the strongest people I've ever met. If you meet someone with Fibromyalgia, you should consider yourself lucky. They've faced the hell's that life has put them through and they're still functioning. They still smile at you even though they know you don't believe Fibromyalgia is a real thing. They could teach you so much about patience, acceptance, perseverance, and love. They'll mostly teach you how to appreciate your life. We watch you, sometimes jealous of your capabilities, but we don't take life's beauties for granted. No way. We'll show you the best places to buy pajamas, (we live for comfort!) hot chocolate, the best books to read, and we'll most definitely teach you how to slow down, breathe and look at the world around you. I can sit in the sunshine for hours and be perfectly content. It'll make my day if I see a butterfly. Did you know butterflies are the official symbol for Fibro? Butterflies and the color purple. I love butterflies. I love life, I love my family. We try to put on a good face for all of you. Forgive us when we can't. The pain really is unbearable. More than anything, if someone says they're dealing with something you don't understand, don't you ever say, "but you look fine." They're not and it is not your place to judge. You will be a better person for being understanding and they will thank you for the rest of their lives.
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Wow, I really could have written this myself! Except for the not believing it part. I kind of knew my diagnosis before the doctor, but like you was hoping he would get a test back that proved me wrong. I wanted to have something wrong that could be fixed! I've suffered for years, but only recently started seeking treatment. Before it was always blamed on my weight. Lose weight and everything is get better, they said. Guess what? I lost the weight. Guess what? I'm pretty sure it just got worse! Thanks for sharing your experience with this invisible, but very real, disease! Today I want to cry, I hurt so bad. So maybe I will. It won't help me feel any better, but maybe it will.....
ReplyDeleteCry! It SO makes it feel better. I've been crying for the last two hours. :) Today hurts like a mother and everything just wants to go wrong today.
DeleteYeah, I don't know why I didn't want to believe it. My mom's an R.N. I grew up reading her medical books, and this is so horrible, but I had an uncle (a doctor) tell me that people don't get Fibromyalgia this young. If my medical loved ones didn't believe me, then it must not be true. "There's a medical reason to everything." My arse there's a medical reason for everything. What you mean is that medical science can't "see" anything right now? "Oh you're so right! It must not be real then.." Ugh. People don't realize how badly you just want to be believed. Fibro has made me so outspoken now though, I can honestly say it doesn't bother me anymore. "I'm sorry your brain is so small. Believe what you need to to get through your meaninglessness life." ;) The pain's still there, no matter what you want to believe.
People wanted to blame my pain on everything, too. I'm still having people write me saying that I need to deal with my abuse, that this will get rid of the pain. I've been in therapy since I was 3. Once the damage has been done, it's there for life. I'm in a healthy place now. The abuse already did its damage. It's not like therapy will get rid of Fibromyalgia now. I eat healthier than the person telling me to eat healthier. I work out more than they do, I weigh less than they do. I have more sex than they do. :) Once it's broken, like Diabetes or Hypothyroidism, it's broken. The end.
The real "funny" thing is, when I first started going to the doctor with ALL my symptoms (which at first I didn't want to tell him everything cause I felt he would think I was just making stuff up, all that was wrong)he told me that there is likely one or two things that have all these symptoms, and not 50 different things causing 50 different symptoms. After months of seeing him and trying to figure it out (I actually felt at one point I was going to have to have a blood transfusion with all the blood he was taking!) someone else mentioned someone they knew had fibro and my symptoms were quite similar. I looked it up at that point and EVERYTHING I was suffering with was listed as symptoms. Being that it is a "made up" disease to a lot of people I did not want to tell my doctor that I had diagnosed myself using Wikipedia! I waited for him to come to that conclusion himself. I sighed with relief the day he did mention it. And now we're playing the game of "find the right med combo". The flexril helps my sleep, and some like thismuch of my brain fog (never heard fibro brain before, definitely using that one)lifted. Memory still sucks tho. And nothing has touched the pain yet. The anxiety is finally being controlled, at the cost of putting on 20 lbs since starting those meds. Wow, so sorry, this is your blog, not mine!!!
ReplyDeletePsh, write all ya want! :) We're here to talk!
DeleteThat's SO nice your doctor eventually brought it up. I can't believe the average is ten years for someone to get diagnosed. I was very lucky to have such an awesome doctor, wish I would have seen it then. All I had heard, was that this was fake. Even if it was real, I didn't want to have the "fake, invisible" disease. I wanted the thing that showed up positive in a test, something you could show to someone, "see? I hurt!" It's hard enough dealing with the fact that you even have a disease, now you're telling me no one will believe me, either? Well, I change diseases then! :)
Flexril's been helping ya? Is that what made you gain the weight? My doctor tried Trazadone to help me sleep, hated the stuff to death. Right now, all I take is Tramadol. Not gonna lie, I love that stuff! Takes the edge off for me. It doesn't totally help the pain, (does anything?) but it sure does help take the edge off. What I mean to say, is that it makes me high! THAT takes the edge off. ;)
Lol! I actually started Paxil for my anxiety (gets so bad I leave grocery carts full of groceries in the isle and have to leave. Even had to walk out of my daughters bday party one year!) long before my diagnosis. That is what has put on the weight. But I can function in public now! The flexeril is newer. Started it after my sleep study said nothing was wrong. It helps me sleep a little better which helps with the brain fog a little. I'm still constantly tired tho. Never feel rested! Just a couple weeks ago I started cymbolta. This is suppose to help with the pain. It also is used for depression and anxiety. So far it's doing nothing for me, but I'm on a very low dose. Next week I go back and it should be raised. I'm hoping it will work well on my anxiety as well so that I can back off the Paxil. He says Paxil is the worst for weight gain but best for anxiety.
ReplyDeleteUgh, pain is such a pain.
DeleteYeah, it's said most people gain 20-50 lbs with Fibro, for the very reason you said.
My first doctor put me on Cymbalta. I absolutely hated it. This doctor I'm with now tried to put me on it, too. Nu uh. I've tried Lyrica, too. Look, not to sound shallow or anything, (ok, I totally am!) but I'm not going to take anything that's gonna make me gain anything. I've lost enough, and losing is hard enough. I don't need drugs that'll make me fat, I do that well enough on my own! :)
Good luck with the Paxil. I've done Paxil before, too. It really worked well for me, helped a lot.