I guess it is amazing that I made it this long. Three months without someone looking at me and doubting the fact that anything was wrong with me. Three months without someone making an insensitive comment. I guess I should be grateful.
That stopped last night. Last night when my headache was at about a 6 and had decided to stick around for two days straight. Last night when I had worked a full day and gone out anyway to help Wills raise money for boobies. Last night when I was putting on my game face because this stupid thing is not going to stop me.
That's when I was told I was using it as an excuse.
That's when I was asked if I planned on collecting disability now.
That's when I was told "I see you out all the time" (a blatant falsehood) so there must not be a problem.
And I did not handle it well.
Thinking about it now in the calm light of day I realize it was an opportunity wasted. It was an opportunity to educate that I did not take. Maybe it was not the time or the place to explain that chronic pain is often invisible and that just because you cannot see it does not mean that there is nothing wrong. But you know what, it is always the time and the place. Because he needed to be educated.
So Mr. Boardsman, here is your education.
I wake up in the morning with a splitting headache. I have to drag myself out of bed because both my condition and my "cure" cause extreme fatigue. I go into work where I educate special needs children all day long. I typically have a headache most of the day. I also experience a variety of neck and shoulder pains as well as tingling in my extremities that makes doing anything difficult. On a good day I feel ok. On a bad day I feel like complete shit. I cannot let the children see. I strive to appear like I am feeling excellent each day.
After work I am exhausted. I go home and typically do not get off the couch for the rest of the evening. Not because I do not want to but because I simply cannot. The pain and the pressure and the fatigue are too much.
Why don't I take some Motrin and shut up? Maybe because pain killers don't work. The only way to decrease my pain is to decrease my pressure. The medicine that decreases the pressure has severe side effects that cause similar symptoms to my condition, but at least I will not go blind. It was not made for this condition so it is not the most effective. Nothing was made for this condition because it is rare. It affects 1 in every 100,000.
I get up every day and I do this with a smile because I am stronger than you can imagine. So next time you want to accuse someone with a chronic condition of "using it as an excuse" maybe educate yourself first.
I don't know that I will be asking 10 of my friends to vote for you, sir.
I was diagnosed with a weird head thing called Idiopathic Intracranial Hypertension (or Pseudotumor Cerebri). This is my blog about living with it.
Showing posts with label pain medicine. Show all posts
Showing posts with label pain medicine. Show all posts
Saturday, March 3, 2012
Wednesday, February 22, 2012
Cookies
I have abused barbiturates today. Go ahead. Judge me, but I am just so sick and tired of feeling like shit. Yeah the pain meds don't help the pain but they do many me care a lot less. Now before you stage an intervention let me clarify, I took half the recommended dose this morning and the other half when I got home from work. So I guess abuse is a slightly strong word, but I feel like taking them is abuse in and of itself because I know they won't help.
I have had a headache for nearly 48 hours straight.
Today I am in the paper. I am on page 11. Check me out. I will not tell you which specific paper because I want to make it challenging for you.
I am baking cookies. I love cookies. I had to make chocolate chip and oatmeal toffee chip. I want to eat them all.
I think the hardest part about IIH is that it is invisible. When I was talking to the NewsMan about it I joked that people think I just always have a hangover, but really that isn't far from the truth. I am tired all the time. I have a headache. I am a little grouchier than I was. Still, I look the same so what can be wrong with me? People who know about my diagnosis and see me for the first time always comment on how I look great. I want to punch them. What do they think will have changed? Do they think I will suddenly have grown a fourth nipple? Everything that is wrong with me is real, but it is all inside my head. Sadly that statement makes me sound like more of a crazy person.
I have had a headache for nearly 48 hours straight.
Today I am in the paper. I am on page 11. Check me out. I will not tell you which specific paper because I want to make it challenging for you.
I am baking cookies. I love cookies. I had to make chocolate chip and oatmeal toffee chip. I want to eat them all.
I think the hardest part about IIH is that it is invisible. When I was talking to the NewsMan about it I joked that people think I just always have a hangover, but really that isn't far from the truth. I am tired all the time. I have a headache. I am a little grouchier than I was. Still, I look the same so what can be wrong with me? People who know about my diagnosis and see me for the first time always comment on how I look great. I want to punch them. What do they think will have changed? Do they think I will suddenly have grown a fourth nipple? Everything that is wrong with me is real, but it is all inside my head. Sadly that statement makes me sound like more of a crazy person.
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