KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
It hurts so bad.
People don't like to know that you're in pain. If you show it, they get upset. Sometimes they'll even get angry with you, or avoid you, or tell you and everyone else that you're trying to get attention.
I've been in so much pain the past 3 days that I've been barely able to sleep (Cailín Ard moved to the floor last night, since I was keeping her up), but she's the only one in the house that I've told. Because even though my housemate is pretty good about things, and is completely supportive of any treatment that I might get, she still starts slamming things around if it's known that I'm having trouble even moving.
Stress makes my condition worse.
I can't concentrate. I can't remember words. I can only read a paragraph or so before having to stop and stretch, or pound on my muscles, or use other ways of trying to make 'gate theory' work for me. They aren't always pretty. Doctors don't seem to have a problem with it, after the first 3 doses of morphine only bring me down to a 6 on the pain scale.
I have been told by numerous doctors to consider medications such as Ultram to be the bare minimum. The doctor I saw for most of my life told me in the strongest terms that I should not feel guilty for using the narcotics he prescribed me, that at my pain levels I would not become addicted, and that if I did, it didn't matter. He expected me to be on Oxycontin for the rest of my life.
I've been crying every time that I'm by myself.
I'm currently out of my pain medications. I haven't been able to see a doctor since last August. In April the insurace will kick in and I'll get to see someone, get my meds renewed. But even with my meds this happens sometimes.
Pain is always a part of my life. Good days are when I'm at a 4. Keep in mind I've been this way for years. My pain tolerance is considered extremely high. When I'm not alone, I smile and talk. Sometimes I was flagged as drug-seeking by Tricare Urgent Care, until they followed the instructions in my records and treated me. They were always sure that I would be knocked out by the amounts...instead I was more articulate and alert, because there was less pain taking space in my head (or sometimes the pain was still there, felt, but I was a bit divorced from it--that's when I had narcotics--you still hurt, you just don't care).
I so desperately want the pain to stop. But it won't. It never stops. There is no freedom, not even a small break. On days like today, death would be a relief (I am not suicidal, I do not seek death, but there's only so much a person can take). The pain is always there. I can't imagine life without pain. There has always been pain.
And I am tired. I've had surgery. Have you? Imagine the night after, the days after, without the medication they gave you. Now it's not only in one place, but everywhere. Every joint, every muscle. It never stops, and you must keep functioning. You must clean, cook, care for your service dog, socialize, and be told that it must not be that bad, because you do what you must.
I wish everyone who has said that to me could experience just one hour of this.
I've been told that I'm abusive towards my spouse, because she will sometimes cook or clean, and go up and down the stairs, when they think she should be resting (she works, I don't). Do they think I enjoy it when I'm in so much pain that I have to save my energy for going to the bathroom?
But since they've said that, I've been using up my spoons to do the things they think I should be doing. Because stress makes it worse, and I just can't handle it.
Please make it stop.