If you have IC, you HAVE to have something to distract yourself with.. mine is raging at people on my team that only speak Spanish and die a lot. Plus I do generally have fun.
Skyrim is sitting under the tree.. I'll get that tomorrow.. Melee Kahjiit it is.
I cooked some good gumbo.
I'm very diet sensitive, of course. Only things that went it was oregano, fresh garlic cloves, basil, crab meat, and shrimp meat. My mom did buy the ingredients for it, but I split it half-and half with her as repayment. The meat was bought at a local stand, so no preservatives. The kicker? The woman running it has IC too. This is a small town I'm in. And I now know of two women with IC. Evidently hers is mild and only hurts if she drinks soda. If course, my mother compared me to her and asked why is she doing so much better than me.
Earlier we got in a fight again. I wouldn't say fight. I was just submissive. She complained how I never clean house and I'm always playing on "that damn computer."
Well. The computer is my only access to the outside world and.. I do a lot more research than reading... that aside, I do try to keep up with things, but in the mornings of winter I MUST have an hour's time to take pain meds, sit on a heating pad, and relax, hopefully with breakfast.. after that I may continue to hurt, or I may not. At which point I'll either tackle some house work or remain on the heating pad.
The main problem with my mom is that even when I do clean, it only brings more complaints. I do the dishes, why didn't I clean behind the toaster? (Because I don't think to move the toaster every day to see how nasty it is.. I can't even eat anything that comes out of it.)
Towels is the main argument. I do towels daily, but there's always a pile on the floor despite having stocks in the bathroom for use. This is because I must urinate in the tub with warm water spraying at the pelvis to control spasms. Since I'm on the pill that turns my urine blue, this leads to blue stains in the tub. She complains constantly about this as well. I do spray bleach in it about once every two days, but it's my only option. I tell her I'm sorry. Because of this I use a towel to dry off before leaving the bathroom. We don't have actual heating in the house, just electric heaters where we need them. This doesn't include the hall. It is very cold, and bad for spasms, so I often will leave my towel on the floor until I come back out for something else after being fully dried and re-warmed. She complains about this and doesn't understand why I leave towels on the floor.
Thing is, I just don't pick it up fast enough. When she leaves on vacation everything gets done, just as it does now, but everything must be done on her time and not on my bladder's time.
Its 7 A.M. now. I'm tired. I want to sleep. But my bladder controls my schedule. I must complete this water bottle or else I will awaken with burning from condensed urine in an already irritated bladder.
I would really like to see a therapist about all this. The pain, dealing with family who can't understand, and worries about my future. Sadly, this is a cache 22. I'm chronically ill with pain and am very hesitant to leave the house. The therapist is not at my house, and if I call in absent on the day of the appointment enough times they can drop me. Worst thing about IC is its unpredictable. Symptoms change every four hours for me, or in other words, every time I urinate. There's no such thing as web-therapists that I know of.. or at least, a therapist that'll meet me in person and maybe do e-mail or chat sessions with me on bad days. Do they do this? I don't know.
And yet again, this costs money.. the final thing my mom was complaining about. I live off financial aid from my school. I don't get paid until February. Right now my boyfriend is paying for most of everything. I can't reimburse my mom for what she spent on my medications. Per month, with good insurance, I'd say its about $50.. and I'm broke.
The way she words it is that I should be doing "something" for money. But who will hire a person that can only work maybe 4 to 6 hours a day on good days and be absent many days for winter? During the summer I could perhaps find a seasonal job.. but now I'm fairly useless in most ways. Only thing keeping me sane is my boyfriend who gets it.
Feeling like I'm being blamed for my illness, or lying about the pain, due to the words of close family members hurt a lot. ICers are 3-5 times more likely to commit suicide than healthy people. They say the main reason is from the pain, which I can see, but also definitely when there's little family support. Mother does support me, but she makes sure I know she thinks I'm playing my pain up more than what it is.
According to her sick people in pain should be in bed sleeping. My pain is near constant. She's only suffered from labor and the flu. I can't sleep for my entire life. I raise this point and she, in a round-about-way, accuses me of just being a hypochondriac since I'm healthy enough to sit in a chair (on my heating pad) and play those "damn" games.
I don't know about anyone else..but sleep is impossible if you're in pain. I know a lot of ICers hardly sleep because of this.
I could very likely get my uro to write her a note, but really, she won't even read the most basic information on IC despite how I present it to her. I really want to move out but just can't.
In the end I was near tears. She says how she must work in the rain and deal with abusive bosses... but I'd trade her my life for hers. While her job is shit, she owns a motorcycle and goes on many adventures with my stepdad when she's off. They just went to Georgia. They always ride in bike rallies. They have plans to go to the Bahamas.
I'm too afraid to leave my property much less state. She attends rock concerts and parties. I stay at home sorta high on Soma and click a mouse at people because it doesn't require walking or pelvic motion of anytime.
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