It's been awhile....I know....

So somehow life gets busy and I let time slip by without writing anything. The question I have is where does the time go???? Christmas is in 4 days for crying out loud....YIKES! I can't even tell you what I've been doing, I'm sure it was highly industrious though....not.

I have 10 days off over Christmas and I'm soooo excited. I can't even remember the last time I had that amount of time off. My husband is home from work, he works 2 weeks away and then spends 2 weeks home. So we get to spend some much needed time on our own for a week before he goes back to work. Once he leaves I'll have 3 glorious days on my own, which is VERY overdue. It's nice just to have time to recharge and not have to worry about anything. Stay up late and sleep in late, that's my kind of holiday.

I've been really achey the last week or so...not sure why, there probably isn't even a reason, fibromyalgia does what it wants when it wants so I'm just trying to roll with it. I don't like having to increase my pain meds though. I'm lucky that I only take Tramodol, which is non narcotic and non habit forming. I can also augment it with Tylenol...which has been pretty standard over the last few days. I find this stuff comes and goes, I'm just glad I've been off for the last 2 days, cuz it's awfully hard to concentrate with radiating pain all over. My in-laws gave us a heated mattress pad for Christmas....it has individual controls on each side MAN LET ME TELL YOU....it is truly amazing....it's like a giant heating pad. I've spent an hour each of the last three days just laying on the bed with it cranked on high, it really really helps. not to mention the fact that it's so very cool to get into a nice warm bed on a cold winter night.

I highly recommend one for anyone out there, fms or not...it's my new favorite toy.

Not much else to say, i'm not feeling overly chatty or inspired today, so I guess I'll wrap up this entry and catch ya later!

jan

Tired!!!!!

I haven't written much lately, primarily because I've been dead dog tired. I go through flares with this disease, and apparently I'm in one right now. The pain has, for the most part, been manageable with meds....but tired????? oh man it's been a killer. It was to the point this morning that I had to turn the heat off in my jeep on the way to work, for fear that I couldn't stay awake. Let me tell you folks, I only have about a 10 minute drive. It's totally crazy, cuz I sleep a good 8 to 9 hours and I wake up completely exhausted. And no for those of you who are wondering, I'm not oversleeping.

I'm sure I've mentioned it before but people with fms suffer ALOT from being exhausted. Our bodies don't enter the restorative stages of sleep and thus can't heal themselves and refuel....it sucks so much to wake up and feel more tired than when you went to bed the night before.
It makes concentrating during my work day a challenge.....lol....luckily the people at work can laugh it off with me. Even that though, is a double edged sword. The main 3 people know that I have fibromyalgia, but they don't really know what that means, and they seem uncomfortable to ask. I haven't really broached it with them because I don't 1. want to push it on anyone, but 2. and more importantly for me, I don't want to sound like I'm whinning, complaining, or even making excuses. That's one of the big pitfalls with fms, is we don't LOOK sick in the least so people don't believe that we really are suffering. I think too, at least in my case, I get good at trying to keep up appearences and then just collapse when I get home, which isn't very healthy either.

It's quite a balancing act that I've gotten myself into. You can sense when people feel uncomfortable when you're talking about the disease, but on the other hand I want to increase awareness at the same time. So for right now anyways my tactic is to explain it if asked....or like now have a very personal tattoo that keeps me strong, but also allows for some sort of dialog when someone asks about it. But as predicted I'm a work in progress, and the struggles that fibro makes me face everyday, are ever fluctuating and changing. As are as evidenced here, my emotions and feelings toward this damn disease. For right now, anyways, I'm reasonably comfortable with how I'm dealing with and coping with the disease in my everyday life...but go figure....nothing stays static! poop!

that's my thought for today....may you all have a wonderful day !

hobbz

New symptom/different twist?

So yesterday, for the second time in a couple of months, I woke up feeling super stiff and sore. Now with fibro I always wake up sore, but this feels like what happens when you workout waaaaay too hard and all your muscles have been taxed to the max. It's truly a different twist on the disease for me. Normally my pain is a radiating pain in my legs mostly, but also my shoulders and neck. this new pain is every single muscle in my body! Like honestly, and I feel dumb saying this, but my fingers and toes are quite painful, even my facial muscles...and it just happens out of the blue. Today it's there a little bit, but nothing like yesterday. I don't know how to avoid it, since I haven't done anything out of the ordinary, so I've just used these days as a day to do a little self care and focus on me for awhile....hmmm that part of it isn't so bad.

As I'm typing this I'm wondering if it sounds like I'm always complaining, cuz that's honestly not my intent with this blog. On the other hand this disease is relentless and it's ALWAYS present in some way shape or form. My wish is to capture these moments when they happen so that those who are fortunate enough to not have this disease, can get a glimpse into what it's like to live with fms....and two that other fibromites cand hear, see, feel that they are not alone. We all have commonalities, even if the only common thread is that fms is completely unpredictable.
does any of this make sense? This is kind of like having a conversation with myself...which isn't all bad for me....but yikes now people have a glimpse into what goes on in my mind! lmao....scarey isn't it....insert gasping laughter here....

Migraines have been another concern for me lately (yes I'm jumping all over the place)....I've had some of the worst of my life! I've started working out at the hospital, and I'm hoping that will help relieve some of this mysterious pain...and cut down on the migraines. Nothing like blinding head pain...to knock you right out.

ok.....so i'm jumping all over....and seem to be having a hard time communicating any logical sequence of thoughts....not sure why...but the fog is ever present today....which yes is another symptom....jump....bounce....jump.....hey look a turtle.....jump....bounce.....ok enough is enough.

lol

hobbz

back on track :}

So I'm back on track and the pissed off me, survived to see another day lol. There's been some research on anger and how it's somehow linked with Fibro, but I can't remember exactly what it was. I want to say that the lack of seratonin in our brains, affects how quickly we get angry....I dunno. I DO know that my patience/tolerance is EXTREMELY low over the last few years, and I'd actually prided myself on being a rather patient person, in my younger years. That could totally have been a false self image however.

I'm much more easily frustrated than I've ever been before, and once I get angry it's at a much more intense level than ever before. It's all so subjective though. It could simply be the demands of ever growing responsability at work, becoming a wife, and parent....or on the other hand it could be that I resent this disease and have no tolerance where it's concerned. I just know that my anger is definately different than it's ever been before, and I've heard others echo the same concerns.

That's the hard part with fms; it's so far reaching into every aspect of your life and your health, you just don't know what's normal and what's not. I know that before my diagnosis, I was convinced that all the pain that I felt was simply due to getting older and not being in my 20's anymore. But let's get real here I'm only 38, which in my opinion, for what it's worth, is just not that old.

There's all these things about my body that have just become normal to me, and I don't realize that they're not "normal" until I hear someone else ask about it, or even worse: when I'm talking about it to someone else that doesn't have fms, and they are looking at me like I'm from outer space. lol yikes! For instance I have random muscle "jerks" "spasms" "ticks" i don't know what you would call them. When I'm sitting still or especially laying down to go to sleep, my leg or arm or both will all of a sudden jump. It's kind of like those dreams you have of falling when your almost asleep and your whole body jumps, except it's just in my legs and arms. Well come to find out, someone on Fibrotalk posted a question about this very symptom, and tons of people report the exact same symptom. It's weird.

This week so far is going pretty well though. I'm really tired but not in bad pain, which I count as particularily good. I've started going to the gym at work....today was my first major work out. I did cardio and lower body weights, so we'll see how I feel in the next few hours. Exercise is supposed to help curb the symptoms of fms, but exertion causes undue pain and fatigue. The key is to get to the point where the benefits of exercise start out weighing the negative side effects. I'm remaining optimistic at this point.

I've lost 30 lbs in the last couple of months, but have kind of stalled so upping my exercise is the next stage to losing more weight. It's definately an uphill battle. I committed this year to getting my body back on track and as the year draws to a close, I am definately happy with my progress.....just keep trucking on, as they say!

later!

hobbz

So I was in the middle of what I thought was a really good post....and then life hit me square in the forhead....and what happens, when life stresses you out????? Your damn disease kicks you in the ass...............................I absolutely hate that a simple stressful event can cripple me.....so I'm off to lick my wounds....

welcome to fms folks


h

oops on comments

So I just, yes only just now, realized that the settings for my comments, prevented people from posting anonymously....yup I'm a goober! lmao....that has now been changed so comment away folks.... isn't it just like me and my fibro fog to space this one out.....oh well, i'll do better next time i'm sure or NOT! lmao

hanging my head in shame....
hobbz

Sooooo I did it! blink blink

So I decided to go ahead and get the tattoo! and I absolutely LOVE IT, I know it probably seems strange to most of you but it works for me. I ended up getting it on the inside of my left wrist...

A couple of people brought up the same issue that aplseed did, about not wanting to be seen as just the disease. For me though it is a way to remember that it is just a disease and it's part of me like a tatoo, but it's a long way from who I am as a whole. I'm not sure why it symbolizes that for me, but it does, and I guess I'm the only one who has to like it and live with it....and I do. The minute it was all finished I knew I'd made the right decision. It's a huge part of my life and part of the problem with this disease is that we don't "look sick", we look perfectly normal and healthy, so people can sometimes jump to the conclusion that it's "all in our heads" or that we just want the "drama" of it all.....which is sooooo far from the truth.

The most positive change for me, has been to start focusing on raising awareness, and not being afraid to admit to/or let someone else know that I DO have a disease and it affects everything that I do. I'm proud to be the person I am, and I'm proud that I have found a positive outlet to focus on with my FMS as opposed to always looking at the negative and how it takes away from my life. Writing this blog and wearing my tattoo with confidence allows me to work WITH my disease and not AGAINST it.

So for those of you who don't like it or think it was the right thing to do, I very much appreciate your point of view and thank you for helping me to explore all these things before I got the tattoo, but know that it's the right fit for me and that's all I can do right now. ...the next right thing for me!

love you all!

hobbz