(I wrote this and posted on Facebook on November 28, 2010 will be doing a follow up post soon on here)
The "F" word. (Not THAT F word!)
So
are you thinking about 'that' "F" word? You know, the one that people
sometimes cringe to hear, others use it like it's nothing and even
others think it is a joke. Yea, that "F" word.. right? Well...the "F"
word I am talking about it Fibromyalgia. Believe me, if it's your
diagnosis you don't want to hear that word, some people think it's
nothing, not a real disease, not a real problem. "Those people are just
lazy, they don't want to work, they aren't in pain, they don't have any
real problems." No...you can't 'see' it, and you don't get a positive
result on anything to show you that you definitely have this disease,
dx, syndrome, whatever you want to call it. Doctors, friends,
strangers, even family have no way to really know what you are going
through. There isn't an x-ray or MRI that you can have done and give
the result that you in fact have fibromylagia. It is more a diagnosis
of exclusion. Meaning you go through all sorts of different
tests---xrays, MRI, bloodwork... whatever you want to add to that
list... and nothing shows up as you having a real problem. So is it
'real'?
I don't know, sometimes I feel like I am going crazy. Sometimes I wonder why it is that I have to hurt every stinking day. I wonder, maybe it's all in my head, maybe it's because I'm lazy... maybe I just want to become a drug addict on pain pills so I make these things up to try and get more pills. Yea, the pills you get! Man, those are some GOOD drugs! Lyrica---makes you feel like you're walking around drunk all the time, makes some get double vision and for sure you can expect to gain weight no matter how you eat! Savella---new one on the market. Doctor wrote me a prescription for this and gave me the trial packet---you have to do a gradual increase of the meds. I had no clue about it so I came home and did the google things... first thing that popped up was a petition being signed to take the drug off the market---it just causes small side effects.. you know, puke your guts out, make you have no appetite, oh wait.. it raises your heart rate---170 or so, no big deal.. and your blood pressure! Also can damage your kidneys and liver. People have died.. there are more bad good reports than good out there about it.. makes me scared to take it.
And wait!! There is more!! You're pain isn't really 'pain' it is just some sort of messed up wiring in your head that causes you to feel pain when you have no reason to do so. So we're not going to give you any pain medications, and if we do it won't really be enough to make you pain free---ever. Not even one day you can pick and say, "I don't want to have pain today so I'm going to go ahead and take this." Because you know, pain meds have side effects----you can become addicted--well dependant when you're trying to get rid of pain and not doing it to get high. Your body builds up a tolerance to it and you have to take more... hum... you know... I think I remember hearing something about that with the 'regular' meds that people can take for this... sometimes you end up having to take more.. or if you stop taking it you have to stop slowly because of side effects/withdrawal.
I don't know.. me, I'd rather take a drug that I know has been around for a long time and I know I've taken with no side effects... than chance destroying my organs, or killing myself.. (yea, I forgot, that Savella also has a SE of suicide attempts increasing.)
So what does it feel like? Well, lets see... When I wake up in the morning my heels and feet are so stiff and sore you would think I had run a marathon in my bare feet on broken glass. Walking down the steps is real fun...Sometimes I go down like an old woman moving one foot down to the step at a time. I have pain all the time in my lower back, almost near where you sit on really---and the more I sit, the worse it gets... and the more I stand the worse it hurts...
If i am trying to hang up clothes on hangers---well I have to do a little at a time because the repetative motion about kills me.. and feels like I did 1000 push ups and I have muscle failure. Just from hanging/folding clothes!
Then there is what they have termed 'fibrofog'. This is where you forget things all the time, have a word in your head but it doesn't come out your mouth... trying to talk to someone and have a conversation in person sometimes is REALLY difficult for me. Typing, writing.. I can do that because I can take the time to figure out what I want to say, how to say it and if it doesn't sound right I can erase it and redo it. Not so in real life.
Being in pain makes me edgy, so little things bother me....and I get upset real easy at things I probably shouldn't be.
Small noises make me feel like someone is running their hands across a chalk board, smells make me sick and get a instant headache (unless it's food smells---vanilla, cotton candy ect).
Nothing takes the pain away.. heat, ice... rest... exercise....it's just there ALL THE TIME. It is depressing really---to think that I have to deal with this another 20-40 years. I get so overwhelmed with sadness sometimes that it's hard to even want to get out of bed... hard to stop the tears once they have already started. Motivation is nill.
I don't honestly know how my family puts up with me... but they do, they love me anyway and put up with my quirks...problems.. whatever.
SO! that's a little bit of what I go through....if you'd like to learn more about what is actually considered part of the symptom list go here----> http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm
I can say that I probably have about 75% of these symptoms.....
So if I sound like a screw up, stupid person when you meet me, forgive me. I am far from stupid. I am a registered nurse by profession and always did well in school----it's quite ironic that I used to take care of people who were hurting physically or mentally...but now I don't know what to do to help myself....
I'm terrible talking on the phone... and sometimes can't think of the right word when we're talking in person....sometimes my days are worse than others and I may cancel doing something because of it.... sometimes I am lucky if I get 3 hours of sleep.... so it's hard to function....
There you have it... my 'f' word story....
:(
I don't know, sometimes I feel like I am going crazy. Sometimes I wonder why it is that I have to hurt every stinking day. I wonder, maybe it's all in my head, maybe it's because I'm lazy... maybe I just want to become a drug addict on pain pills so I make these things up to try and get more pills. Yea, the pills you get! Man, those are some GOOD drugs! Lyrica---makes you feel like you're walking around drunk all the time, makes some get double vision and for sure you can expect to gain weight no matter how you eat! Savella---new one on the market. Doctor wrote me a prescription for this and gave me the trial packet---you have to do a gradual increase of the meds. I had no clue about it so I came home and did the google things... first thing that popped up was a petition being signed to take the drug off the market---it just causes small side effects.. you know, puke your guts out, make you have no appetite, oh wait.. it raises your heart rate---170 or so, no big deal.. and your blood pressure! Also can damage your kidneys and liver. People have died.. there are more bad good reports than good out there about it.. makes me scared to take it.
And wait!! There is more!! You're pain isn't really 'pain' it is just some sort of messed up wiring in your head that causes you to feel pain when you have no reason to do so. So we're not going to give you any pain medications, and if we do it won't really be enough to make you pain free---ever. Not even one day you can pick and say, "I don't want to have pain today so I'm going to go ahead and take this." Because you know, pain meds have side effects----you can become addicted--well dependant when you're trying to get rid of pain and not doing it to get high. Your body builds up a tolerance to it and you have to take more... hum... you know... I think I remember hearing something about that with the 'regular' meds that people can take for this... sometimes you end up having to take more.. or if you stop taking it you have to stop slowly because of side effects/withdrawal.
I don't know.. me, I'd rather take a drug that I know has been around for a long time and I know I've taken with no side effects... than chance destroying my organs, or killing myself.. (yea, I forgot, that Savella also has a SE of suicide attempts increasing.)
So what does it feel like? Well, lets see... When I wake up in the morning my heels and feet are so stiff and sore you would think I had run a marathon in my bare feet on broken glass. Walking down the steps is real fun...Sometimes I go down like an old woman moving one foot down to the step at a time. I have pain all the time in my lower back, almost near where you sit on really---and the more I sit, the worse it gets... and the more I stand the worse it hurts...
If i am trying to hang up clothes on hangers---well I have to do a little at a time because the repetative motion about kills me.. and feels like I did 1000 push ups and I have muscle failure. Just from hanging/folding clothes!
Then there is what they have termed 'fibrofog'. This is where you forget things all the time, have a word in your head but it doesn't come out your mouth... trying to talk to someone and have a conversation in person sometimes is REALLY difficult for me. Typing, writing.. I can do that because I can take the time to figure out what I want to say, how to say it and if it doesn't sound right I can erase it and redo it. Not so in real life.
Being in pain makes me edgy, so little things bother me....and I get upset real easy at things I probably shouldn't be.
Small noises make me feel like someone is running their hands across a chalk board, smells make me sick and get a instant headache (unless it's food smells---vanilla, cotton candy ect).
Nothing takes the pain away.. heat, ice... rest... exercise....it's just there ALL THE TIME. It is depressing really---to think that I have to deal with this another 20-40 years. I get so overwhelmed with sadness sometimes that it's hard to even want to get out of bed... hard to stop the tears once they have already started. Motivation is nill.
I don't honestly know how my family puts up with me... but they do, they love me anyway and put up with my quirks...problems.. whatever.
SO! that's a little bit of what I go through....if you'd like to learn more about what is actually considered part of the symptom list go here----> http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm
I can say that I probably have about 75% of these symptoms.....
So if I sound like a screw up, stupid person when you meet me, forgive me. I am far from stupid. I am a registered nurse by profession and always did well in school----it's quite ironic that I used to take care of people who were hurting physically or mentally...but now I don't know what to do to help myself....
I'm terrible talking on the phone... and sometimes can't think of the right word when we're talking in person....sometimes my days are worse than others and I may cancel doing something because of it.... sometimes I am lucky if I get 3 hours of sleep.... so it's hard to function....
There you have it... my 'f' word story....
:(
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