What does living with Fibromyaglia feel like? Well according to a lot of people I've talked to about it, they know EXACTLY what it feels like! I mean, they've sprained their ankle before, broken a wrist, had surgery, had the flu for two weeks once...TWO WHOLE WEEKS, people. Shut.The.Front.Door. They tell you, "just suck it up," "get more exercise," "it can't be THAT bad," "it's not even a real thing," (more on that in another post), and my favorite is, "I think you just enjoy being lazy."
Yes, that is exactly it. You caught me! Gah, I guess now that the gig is up I have to get up and just do stuff. Who in their right mind would just enjoy sitting around being basically bed ridden? Let me be the very first to tell you, IT'S BORING!!!!!! I have little ones all day every day so for me to sit down and "be lazy" means I'm stuck watching some craptastic cartoon(s) all.day.long. Not really my idea of fun. Not to mention at least one of the two little ones will be wallering in my lap at some point if not most of the day. So, not only is it boring, but it's uncomfortable too.
I'm so tired of people telling me they understand, or they've "been there" and they got over it. What the eff ever! So, I thought I'd tell you about a typical fibro day for me. I wake up either when the baby makes me or my alarm goes off to get the big kids ready for school, usually between 6am and 8am. Waking up consists of me literally rolling out of my bed, and slowly trying to stand up into a straight position. The way my back, neck, and shoulders hurt every single morning, simply getting of bed is an ordeal for me..a very painful one at that. I wake up feeling like a cement truck has stopped by my bed and poured concrete into my neck making it nearly impossible for me to turn my head or do the simplest things like pick up my baby without pain.
By 8:30 the kids are in school and by 9 the baby is ready for a nap, and luckily if he's not ready, he'll take one with me because by 9:30 I can hardly keep my eyes open. Yes, I am THAT tired after just waking up. So we nap, usually until 11. Now, because I have a four year old, I don't nap deeply but I do doze off while he is watching tv. I'm not proud that I fall asleep while my child is awake, but I'm honest about it, and it happens. After our nap I'll get up and try to do some dishes, maybe a load a laundry, or clean the bathroom...on a good day. On a bad day, I simply sit as much as possible. I get my kids at 2:20 every day and some days we walk to get them and on bad days we drive to get them...guess what happens more? Any day that I manage to get in ANY amount of exercise feels like a huge accomplishment to me. Even though that short mile and a half walk is sure to make my achey knees ache even worse until I wish I could just cut my legs off above my knees. Once we get home, I rest and put the kids to work, picking up and doing their daily chores. On good days, I help. On bad days, I sit.
As the day wears on, my neck, shoulders, and back only get worse. My knees, ankles, hips, lower back, and wrists all throb, and while not totally unbearable all the time, it's not pleasant. But alas, I still have to make dinner for six people. Something that most people dread but not me! I love my time in the kitchen. Or, I did, until fibro took that away too. Cooking has become a chore most days. I love it on my good days but more often than not, I dread it. And yes, the way my family is used to eating has changed. It's less healthy, but it's still pretty healthy, and at this point, I'll take what I can get.
After dinner is done, I most always have a full on headache and still have homework to check, baths, and bed for 4 kids to tackle. Thankfully, my better half is usually home by now and a huge help. And by now, the pain is so intense everywhere in my body that I can't hardly stand it. Most people would retreat to their beds hopeful that morning would bring sweet relief. But no me, not I. I can't because the pain is too much and I can't sleep. My mind is going a million miles a minute and I can't shut it off. When I finally do go to sleep, it's well into the wee hours of the morning and all I can do is pray that I wake up in a little less pain than I was in today. And that is just ONE day and ONLY the phyiscial pain that I deal with every single day. There is no deadline, no expiration date that this all goes away for me. It's not a sprained ankle, or a broken arm, it's not the flu, and I can't just exercise it all away so don't you dare tell me to get over it.
Wednesday, February 20, 2013
Whewwwwwww!!!
This has been one helluva week!!!! SIX puking people all at the SAME TIME. Shoot me now!!! Sent the hubs to the doctor so he could could a note for work and the conclusion was we all have rotavirus..yay. The stomach flu can just suck it! Tonight I am going to work on the look of this bloggity blog and hopefully start on a couple of posts for the following days. They will be be mostly about what it's like to be me and how much people without the "f" word just don't get it and some of the incredibly stupid crap I've had people say to me concerning fibro. Stay tuned!!!!
Wednesday, February 6, 2013
About Me
So, I thought I'd tell you a little bit about me, my life, and my family. I am a 31 year old wife, and mother of four amazing kids. Three boys and one girl,ranging in age from 11mths-9yrs. Man I am BLESSED!!! My husband and I have been married for almost 10 years and he is an amazing man that works his butt of for me and the kids. He has stuck with me through thick and thin...through sickness and health. And let me tell you, there has been a whole lot more sickness than health.
For YEARS now, I haven't felt right. I suffered through depression and anxiety. I self medicated with alcohol. Almost 3 years ago, I was diagnosed as bi-poloar and having adhd. The ADHD meds helped me a lot. But with the bi-polar they had me on and off a different med each week and I eventually thought I was going to go crazy. We made a drastic life style decision and packed up and moved across the country to be with family. During the first few months we were here I was taking at LEAST 13 medications EVERY.SINGLE.DAY. And I was a total zombie. Actually, I have very little memory of the first few months here in Cali. And then, very unexpectantly, we found out we were expecting our fourth child, so off the medications I went. Talk about horrible. Between withdrawals and first trimester sickness and exhaustion, I was miserable and an absolute mess. There wasn't a time during that pregnancy that I felt "well." I actually lost 30lbs because I couldn't eat but I was always achey and tired...scratch that...EXHAUSTED!!! But I chalked it all up to being preggo...I mean it wasn't my first go-round, but this 4th pregnancy was BRUTAL.
So, I went in to deliver and things were progressing well. Then, I asked for my epidural...can you hear that.....("DUNNNN DUNNNNN DUHDUNNNNNNNNN.) So, I got my epidural, and YAY, got some pain relief!!! Until, the numbness started creeping up my stomach, to my boobs, (OMFG, I CAN'T FEEL MY BOOBS, I screamed,) to the top of my shoulders, down my arms, and then the worst...up to my throat. It was the worst and one of the scariest moments of my life. I was sure I was going to die. But, obviously I didn't, as he is now almost 11mths old and here I am writing about the "F" word and how it's changed/changing my life.
About two weeks after we brought our baby home, I started experiencing the most excruiating pain in my right shoulder blade. It seriously felt like someone was poking me with a burning hot cattle prod. I went to my doctor and she shocked me with the news that she thought I had shingles. SHINGLES???? WTF?? That is for OLD people...NOT me! But it turns out she was right and I started on 6 more meds a day. Good. Freaking. Times.
After the horrible burning pain finally started to subside, I started feeling pretty good and I was LOVING it! My house was always clean, my kids, happy and healthy and doing wonderfully in school. And then one day, BAM. I felt like crap again. I chalked it up to an illness; something the kids had brought home from school. But, it never went away. Sure, I have good days and bad days. Who doesn't? But as the days go by, my good days are days that I can manage to cook some eggs for my youngest two, go to the bathroom, put cartoons on for the 4 year old, and pass out with my baby for a morning nap. THIS ISN'T HOW I WANT TO LIVE MY LIFE!!!!!!
I want to go, go, go, go, GOOOOOOOOOOOOOOOOOOOOOOOO, but my stupid body isn't letting me. I hate my body right now. I feel like it's betraying me and robbing my kids of the mother that they should have had. Not to mention, robbing my husband of a wife able to stay at home and keep a clean house and not complain about how I feel every time I talk to him. I keep telling myself, "tomorrow will be better." I really hope it's true but I am not holding my breath.
I'm seriously hating the "f'" word right now....it's ruining my life and it's not fair!
For YEARS now, I haven't felt right. I suffered through depression and anxiety. I self medicated with alcohol. Almost 3 years ago, I was diagnosed as bi-poloar and having adhd. The ADHD meds helped me a lot. But with the bi-polar they had me on and off a different med each week and I eventually thought I was going to go crazy. We made a drastic life style decision and packed up and moved across the country to be with family. During the first few months we were here I was taking at LEAST 13 medications EVERY.SINGLE.DAY. And I was a total zombie. Actually, I have very little memory of the first few months here in Cali. And then, very unexpectantly, we found out we were expecting our fourth child, so off the medications I went. Talk about horrible. Between withdrawals and first trimester sickness and exhaustion, I was miserable and an absolute mess. There wasn't a time during that pregnancy that I felt "well." I actually lost 30lbs because I couldn't eat but I was always achey and tired...scratch that...EXHAUSTED!!! But I chalked it all up to being preggo...I mean it wasn't my first go-round, but this 4th pregnancy was BRUTAL.
So, I went in to deliver and things were progressing well. Then, I asked for my epidural...can you hear that.....("DUNNNN DUNNNNN DUHDUNNNNNNNNN.) So, I got my epidural, and YAY, got some pain relief!!! Until, the numbness started creeping up my stomach, to my boobs, (OMFG, I CAN'T FEEL MY BOOBS, I screamed,) to the top of my shoulders, down my arms, and then the worst...up to my throat. It was the worst and one of the scariest moments of my life. I was sure I was going to die. But, obviously I didn't, as he is now almost 11mths old and here I am writing about the "F" word and how it's changed/changing my life.
About two weeks after we brought our baby home, I started experiencing the most excruiating pain in my right shoulder blade. It seriously felt like someone was poking me with a burning hot cattle prod. I went to my doctor and she shocked me with the news that she thought I had shingles. SHINGLES???? WTF?? That is for OLD people...NOT me! But it turns out she was right and I started on 6 more meds a day. Good. Freaking. Times.
After the horrible burning pain finally started to subside, I started feeling pretty good and I was LOVING it! My house was always clean, my kids, happy and healthy and doing wonderfully in school. And then one day, BAM. I felt like crap again. I chalked it up to an illness; something the kids had brought home from school. But, it never went away. Sure, I have good days and bad days. Who doesn't? But as the days go by, my good days are days that I can manage to cook some eggs for my youngest two, go to the bathroom, put cartoons on for the 4 year old, and pass out with my baby for a morning nap. THIS ISN'T HOW I WANT TO LIVE MY LIFE!!!!!!
I want to go, go, go, go, GOOOOOOOOOOOOOOOOOOOOOOOO, but my stupid body isn't letting me. I hate my body right now. I feel like it's betraying me and robbing my kids of the mother that they should have had. Not to mention, robbing my husband of a wife able to stay at home and keep a clean house and not complain about how I feel every time I talk to him. I keep telling myself, "tomorrow will be better." I really hope it's true but I am not holding my breath.
I'm seriously hating the "f'" word right now....it's ruining my life and it's not fair!
Do ya get it???
Fibro my ego......ahem, "Leggo My Eggo." Bad joke, hmmmmm....perhaps, but I think it's funny, and after the past few days, I NEED some funnahhhh!!!! I'm not really writing tonight..I'm still processing the hours I've spent reading blogs, crying while reading blogs because i totally relate, reading medical sites and journals, and coming to my own conclusions and realizations about the dreaded "F" word. I realize I've totally been "F'd" and even though it hasn't been confirmed by a MD yet, I know when I finally make it in to see the Doc(s) they are all going to confirm the fact that I am being completely "F'd" over. And so my journey begins. Welcome "F'ers"
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