To thy own self be true!

Believe it or not I've found that even in the quagmire that is Fibromylagia, one can find a blessing, of sorts. This disease is unrelenting, it doesn't care if you're really busy, have to get a million things done, or even that you've planned a fun activity. Basically it strikes when it wants to.
The worst bouts though, can be brought on by stress, and for me this is very much the case. Within about an hour of getting angry, upset, arguing with family, staying up a little too late, pushing myself just a touch harder than I know is safe.....the pain will hit my body. Which sucks, but what it's taught me is that I have to put myself and my health first! I've always tried to put everyone else in my life first, and not ask for any help when I've needed it.
The same can be said to be true with my disease....I haven't talked about it much to others because I've not wanted to look vulnerable, weak, disabled etc....But all this has been to my detriment, because the more I work towards being as healthy as I can be, the more my body reminds me that I must put me first!
So this is a good thing, I have my ever faithful companion FMS at my side to remind me to slow down, rest, ask for help, be peaceful....whatever is needed at the time. I heard recently a lady that was speaking about feeling like it was her job to take care of everyone else in her life.....she came to the realization though, that it wasn't that she was necessarily "taking care" of them, but rather "focusing" on them.
This thought really rang true for me...it's easier to focus on others so that I'm not left worrying about me. Where do you learn to make yourself a priority? I must have missed that class...or memo...or newscast what ever it was.
So my focus this week is to make sure that I get what I need to get done, done, and that my family is taken care of...but not at my expense, and more specifically my health's expense. I can't be a good employee, wife, mother, daughter, friend, sister, etc etc unless I have my best self to put forward....so that's my goal for this moment....and hopefully the next moment....I'll keep you posted.....

take GOOD care of YOU!

hobbz

yet another rainy day

Do any of you notice how hard it is to get out of bed when it's raining???? wow my bed was soooo comfy this morning. Worried about back pain and wrist pain today. My fear is that my I'm gonna develop carpal tunnel in my hand, and not be able to work in my current job. That's what happened with my feet. I'ts only been 2 months and now I'm getting all the symptoms.....hmmmm how very frustrating.
splinting and icing but doesn't make much difference yet.

i'll keep ya posted....off to bed, I'm exhausted!

j

Question of the day????

So my question of the day for all to answer and interpret any way you choose.....

"How do you know when enough is enough?"

simple yet oh so powerful and difficult.....let me know your thoughts.

j

the dreaded symptoms

I'm kind of letting this blog take shape all on it's own, since I don't really have it mapped out. It occured to me today, that my goal is to increase awareness/understanding of FMS and that if I'm going to do that I should probably define the disease/syndrome itself.

I recently got the book "Taking Charge of Fibromyalgia", it gives a good outline of symptoms/criteria for diagnosing the disease so I'm going to borrow their good work...lol

their definition reads: "history of widespread pain for at least 3 months...Pain on the left and...right side of the body. Pain above the waist...and below. This includes: cervical spine or anterior chest or thoracic spine and low back pain"

Most common symptoms listed are:
-muscle pain
-tender points
-sleep disturbance

listed as frequent symptoms....but in my opinion they are common symptoms....
-extreme fatigue
-subjective swelling
-joint pain/restless extremities particularly legs
-neurological symptoms
-headache
-irritable bowel/bladder
-morning stiffness
-raynaud's phenomenon
-memory problems
-difficulty with concentration/short term memory
-decreased painful sound threshold
-dizziness/vertigo
-heart palpitations....

Now to be fair the list goes on for pages, I'm just highlighting what seems to me to be the most frequently mentioned symptoms when I have conversed with other's. These definately give an overview of my personal symptoms.
When typing them it seems like an extremely long list! ick...the sad part is, that it is just the basics of the disease, as it affects everything in your body and how you function in general.

I'm so scared that by posting these types of things that I will only scare more people off. I guess what it comes down to is that I'm pretty uncomfortable with sharing vulnerable parts of my life...it's one thing for Bret and Lee to know the dirty truth of this disease and how it affects me, but it's a totally different proposition to be posting it on this blog with no control over who sees it.
But....
that's the whole point right? If I don't take the risk, then I can't expect the general public to understand this disease let alone how it affects those of us who have it.

So I'll leave you with the plea to take this information in, and not be judgemental, rather supportive of anyone in your life who has FMS. Second, PLEASE leave comments so I know that this is at least reaching more than just "aplseed" and myself....lol....if nothing else it's proving to be rather cathartic for me....(blink, blink, blink)

jan/hobbz

Thank you to all who have written me awesome notes of support and encouragement on the FibroTalk message boards!
Without you guys life would sure be alot scarier. It is absolutely amazing to find a place where EVERYONE knows exactly what you're talking about. Sometimes when I try to explain how FMS affects me or makes me feel, I get the feeling that either the person is uncomfortable hearing about me being "sick" or that they just don't get it.
On the flip side though I don't know how anyone really could get it without feeling it. My immediate family gets it (for the most part) because they live through it with me daily...but people that are more removed don't really understand....which is ok too.

I'm rambling, but my point here is...that FibroTalk is a life saver! Thanks you guys!


hobbz

in response to aplseed...

You are so totally right aplseed! Most of us are not in a position where we are able to survive financially, if we didn't work, or went on disability. There are so many people that are just "sucking it up" and going to work everyday. The problem is that EVERYTHING suffers when we do this.
1. it's impossible to do our best in our jobs
2. once we get home, we are essentially useless
3. for me anyways, all of time off is spent sleeping and recouperating so I can make it through the next day of work.
4. we can't be totoally present for our families
5. my social life sucks because, even when I do reach out and make plans to do something, unless it's spur of the moment I can't guarantee (sp?) that my body...let alone my brain will be healthy enough to follow thru.

I know that my husband struggles too, he wants so much to help, but he can't do it all himself, when it comes to cooking, cleaning, etc. I'm certainly NOT the person I was 10 years ago, and while some of me is better, I'm certainly lacking my same over achiever, go get it attitude....

i'm right there with you....I wish there was a quick and easy cure.....on second thought it wouldn't even have to be quick and easy.....just simply a cure.....

hobbz

it's all in the perspective...

Sooooo, here's the thing....everything we experience and do in our lives, all boils down to perspective. If I choose to believe that all is bad and that life is conspiring against me. Well....then....frankly it does. So the key for me it seems, is how to shift the frame through which I view the world, and subsequently view my illness. When I last wrote everything, big or small, seemed overwhelming and insurmountable. What I have to remember, ( I think), is that whatever feeling, view, belief that we are experiencing in this very moment...is simply that...just a moment in time. Who knows what the next moment will bring.

We can ALWAYS be worse off. Conversely, the opposite is true, we can always find something good to focus on as well. All these theories seem so simple in concept, but in the moment in the reality of a situation, it seems a daunting task to remember to step back and look at the whole picture.

Fibromyalgia strikes in the moment, and you never know from minute to minute how you are going to feel. It's easy to get stuck in the circle of always waiting for the other shoe to drop...this disease can have a cruel sense of humor. I think it's key to have time alone each day to meditate, center yourself, pray...whatever you subscribe to....to focus on the big picture and to be in tune not only with your body, but to make that body connection link up to your brain too. All too often I've thought myself into a problem that didn't/doesn't even exist...what good is any of that????

All I know is that typing this and putting it out there for anyone to see, is terrifying and freeing all at the same time...I've always taken pride in my ability to hide what's really going on with me. I never want the whole truth out there, but one of the biggest problems with having this disease is that sooooooo many people are completely ignorant and unaware of it's existence. You can't tell by looking at someone if they have FMS, and lots of people have been judged and told that their dramatizing or making shit up for attention. It simply isn't true! This disease takes over and has some devastating effects, they just aren't visible....so it's my belief that even if only one other person reads this....at least I've spread the word.

So to anyone that reads this...just take note and understand that this is a real condition, and it is life altering, but it doesn't have to be life halting...to my fellow fibromites...stand strong and try to keep the big picture in the frame...don't zoom in!

j

OFF TRACK I GO.....AAAAHHHH

So today is one of those days! Anyone with FM knows of what I speak. I'm going to preface this blog with the fact that I'm ranting; so it probably won't make a lick of sense, but for me, that's what this blog is for. A place for me to share my good, my bad, and my ugly!

Over the last 5 years I've slowly been scaling down my employment in a few ways:
1. I've changed how physically demanding my job is. I've gone from EMT, to Respiratory therapy, to desk job in a NICU, to desk job in a calm and quiet dept. in the hospital. All of this inspite of the fact that I absolutely LOVE working with medical emergencies.
2. My hours have also changed dramatically. 24 hour shift to 12 hour shift, to 10 hour shifts, to five 8 hour shifts per week, to four 8 hour shifts/week, and now finally to five 6 hour shifts per week.
3. I've gone to high stress, adrenaline pumping work to, answer phone calls and log them (maybe a tad simplified, but you get the idea)

Now at the time of each change I've come up with ways to convince myself that I wasn't doing it because I have FM, but rather the schedule is better, or the hours work with my son's school or whatever, crap I want to feed myself with.

The brutal and honest truth is that my body can no longer handle stress of any kind, AND it most certainly will make me pay, if I work more than about 25-30 hours of even the most calm and mundane job, a week. So all of this is leading to a point...really it is.

Starting this past Monday (oh my god, that's only 2 days ago), one of my co-workers is off work for 6-8 weeks to recover from knee surgery. So I am doing her job and my job, which has taken me to 8 hour days, and I'm not even getting everything done. So now it's day 3 and I'm a mess, physically, emotionally, and spiritually. I hurt so bad I can't even stand it! The fibro fog has hit my brain like a brick wall ( nothing in nothing out), and my tolerance for ANY LITTLE THING has gone out the window. I can't sleep, eat, think, rest, coexist....i'm pretty much beat up. I hate the fact that I've become this pathetic...I used to be able to do anything I put my mind to, and now....well,....what? I dunno? I feel lost, let down, angry, frustrated...blah blah blah.

It is so defeating to not be able to use your mind and body like everybody else. Like the body I had ten years ago...i can't even describe what it's like to be trapped in this shell. I know there are people out there that have way bigger challenges, and medical issues; but by the same token, this is what I live with, day in and day out.

you know how you feel when you have the real icky flu, you ache all over and it hurts to have a blanket on your skin...right now that is multiplied by 10,and you get how I feel physically. I won't even get into my lack of brain function.

I just want to be normal again for one day! please....please....please....
it just feels like there's no point to any of this, but I have to work, and I'm not bringing in enough money to help support our family...what is the answer????

the answer is there is no answer, I just have to suck it up and deal with the hand that was dealt to me....which of course I will do....just cuz that's what I do? is there really any other choice? nope?
so to the blogging world i bid you a restfull night of sleep, if I can't have it somebody else sure should....lol (pathetically)

j