i'm nautious today. i've been having a small round pain on my left side of my stomache. really its lower than that but it hurts especially when pressed on. i have a low tolerance to pain again. my small dog will walk over my stomache and i will yell alout "OW!!!!!!!" it hurts for him to even walk on my arm. I've used HeadAndShoulders and my scalp is still flakey. Theres tiny bumps that hurt probably from scratching my head alot allowing it to bleed. Last week my leg was itching alot and there was a small rash. Its still there with a crusted part in the middle. I'm not sure what to think of it. The petechie is around my body again. I've noticed a little here and there. Not too much. The body pain is less today and I slept okay last night not much waking up. Lately i noticed less blotchiness on my legs. It looked like it was purpleish bruising but not bruising. I don't know how to explain it. But i noticed less. but its not gone.
my step mother in law thinks I'm bipolar and doesnt understand why I wont work. She thinks its unfair that Mike has to go to school full time and work 30 hours a week. I told her that I did it. A lot of people do it. I hope mike understands that and doesnt get in their trap. Its alot for him to be a new husband, live on his own, and take care of his wife all at once. He's never done any of it before. Its not like he has to clean the apartment or pay all the bills. I had to do ALL of it before. Thats what it takes to live on your own. I'm kinda upset he didnt defend me though to his dad and stepmom. But I was not as hurt as i used to be when someone didnt believe me that I was sick. Probably because I have alot of support now, even if it is a message board group!
Another thing, yesterday I walked my dog down the street and ran into an old school friend from last fall. He asked how I was doing and what I was doing. What am I supposed to say to that. I don't have any small talk to give besides whats going on with me! "Hmm. well i'm married and I have lyme disease, I dropped out of school got fired from my job and now I'm trying to recouporate from this disease where i can lie on the couch for a week at a time and do nothing because of tremendous fatigue or pain! Oh and I went out the other day, yay, cuz i never do that." HOW BORING and weird! So i didnt say any of that. "I'm walking, getting this thing here" We were at 7/11. "then i'm going home!" "great you still living at home?" "no I'm married now" "cool" "oh yeah congratulations" "thanks" And because i was so uncomfortable mainly because of my hair we stopped talking and i turned around to look at something and then he was gone. great! So how am I supposed to give hope to people when i'm like this?
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1 year ago
2 comments:
Some of my family believes I should return to work as well. And they don't let me forget it.
Well they would know, wouldn't they??
I give credit to all you who are sick but dont look it, or act it.
I have never had any of these expieriences because my illness is so visible and severe, that it would be almost impossible for anyone to doubt this when I have paralyzed legs, seizures, 102 fevers daily, projectile vomitting after meals.etc..., I have a list of of 73 symptoms and many of them are Objective findings (meaning they are visible to a doctor, or on a test, or to the naked eye).. I also saw the tick bites, got the rash, and have pos. tests.
But those people w/ Lyme who "look good" and have mainly subjective symptoms (like Fatigue, headaches, muscle pain, noise and light sensitivity..etc..) and also those who didnt see the tick or the rash....are usually doubted, and sometimes even said to be "malingering" or a "hypochondriac" or "it's all in your heads" or "you're just depressed". I think anyone who is constantly feeling lousy, but doubted and told all of those things is going to beome very depressed, and even begin to doubt themselves.
I think that your Mother in law was way out of line for saying that you are bipolar--but, the bottom line is that people do not understand this disease. Sometimes, when I hear stories like this, I try to put myself on the "outside"...what if it was reversed? and someone in your family or one of your friends was saying they were sick but they looked fine, and really for the most part seemed "okay" to you....I think I might have a hard time believing them (at least at first), especially if some of their symptoms were the neuropsychiatric Lyme symptoms, which can range from depression, to tantrums to people throwing things to lashing out at people....to hurting themselves. At this point I would think (not being knowledgeable about the disease) that the person had a psychiatric illness, and their dropping out of school and work was only going to make their depression worse by not socializing w/ their peers....and being locked in a house all day would be worse for their "condition".------I think this is how the "outsiders" look in sometimes.
I think the best thing you can do is educate them....even if they are not being respectful of you, they dont know about Lyme---even the doctors can figure out this disease!!!!....and since they have an influence on your husband, you probably want them to understand your condition...instead of the whole "your wifes a psycho thing" lolol
I also sometimes find myself not knowing what to say when someome IM's me and says "How are you? or Whats up?".....the responses vary between "Im feeling horrible, I have a fever, my head is killing me, I havent slept in about a year, and Its not getting any better!...but how are you.?" or to answer whats up, "Uhh same...Watching TV, laying in bed, Watching more TV....Checked my emails....did you know there are 65 tiles in my ceiling...?"....Its so boring!!!
I usually just same something like "hanging in there"....to save the person from boredom :)
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