Why I Haven't Posted

Though no one has suggested to me, in so many words, that my life is easy and that living with pain is no big deal, I wonder if most people know how big a deal it is. I haven't posted because reclining in a chair and watching TV has been more than I've been up for the past few weeks since the temperature changed from Winter to Spring overnight. Let me state that more clearly. Reclining in a chair and watching TV/using my tablet to play games is too much. I end up spending the better part of a week coming down from the additional strain of a doctor appointment, posting here or spending more than an hour writing fiction. Much of that hour is spent deciding what I was doing when I left off from the last writing session.

There are a few types of discomfort that I hardly bother counting on my good days. Have you ever had electricity sent through you for medical purposes? There are various tests that send small amounts of electricity through you mostly to test nerve function. I believe the main one is called an ENG but I never bothered to learn what it stands for. There are two stages to the test that I remember the most. One measures the amount of time it takes for an electrical pulse to get from Point A to Point B. The second part to that test involves seeing how much current it takes in order for you to notice it and bite the tech's head off. (They told me the second part was optional but electrical current is unpleasant even in small amounts.) Honestly, I didn't bite any heads off but it was close. My pain doc's techs are very nice so I do my best to be polite in return.

The second piece of electrical medical equipment I have some experience with is called a TENS machine. After a nearly ten year quest, I was issued my TENS unit. The concept behind this is that it will jam nerve signals that carry pain to your brain. This was part of my quest to have surgery done to establish the same setup permanently. The dream was to jam my headaches and my arthritis pain so that I could go back to living life. Unfortunately, the tech who came to my house delivering the machine was very clear on one thing: you cannot use a TENS machine anywhere around your head. I was supposed to use the machine for 20 minutes a day every day for a month as a start but I noticed something bad after a few days. The TENS machine was sending current through the muscles that suffered electrical pain already in order to try getting to my knees. When I saw the doctor three weeks later, he praised my decision to stop using the machine because it was making the symptom worse. I just wanted to mention this to let you know my pain docs are sane and all. Also, the good news was that I was able to describe that part of my pain as electrical pain once and for all.

On a good day, I feel as though that TENS unit is on all the time with a boost from the ENG devices. I feel as though my muscles in both arms and legs are firing constantly so that it is uncomfortable to sit still. I twitch all over like that ENG current is going through me. The electrical pain never truly stops. Sometimes, I get busy enough with a project that I can ignore it. At this low level, it is the relentless quality that makes it add up to something horrible. That, of course, is a good day.

Once upon a time, I was chatting with my father about my arthritis pain. At the time, the best comparison I could give him to my joint pain was him going skiing for the first time in a season and forgetting/neglecting any stretching or warming up. This was during one of the longest good periods we had where we talked about things so he reacted very positively. There was no way he could suffer that sort of pain every day and not go crazy. That's what all the newbies say but I'm starting to doubt the existence of pain that would make you go crazy. Also, the new medicine at the time and other new medicines since then has made things better. Now, I feel as though someone beat me up to some dangerous degree but last week. Maybe someone who wasn't that tough used me as a punching bag yesterday. That's a good day.

Touch sensitivity is a good next thing to describe because it also resembles healing after a good ass kicking. Over the past year, this pain has extended to my face. I feel bruised in the literal sense though I stopped looking for the black and blue years ago. This past summer featured me going to Melissa and asking her where the bruises on my face were. The sensitivity was so bad that I believed there would be actual bruises. On a good day, I can manage this with being careful who touches me and what I touch. I don't dare do something like sitting on the floor to play with the cats because the floor is too hard. That's with the nice, new carpeting we had put in since the flood. I had to find a new recliner at the end of last summer because the old one didn't recline and wasn't soft in all the right places. I got lucky with the hotel even in the small room because there was a chaise lounge that fit pretty well with some pillows in the right places. As long as I don't have any bad touches and my stress levels stay normal, I won't have a problem.

The most intense regular pain is the back of my head. I will spend about two hours in pain that leaves me unable to speak understandably or even think clearly. The effort of pushing words out at a volume that Melissa will understand some days causes a new "bruise" to form on my head and it will fade in a few minutes unless I have to keep trying. If I rest the back of my head against the recliner's headrest the wrong way, it does something to the angle of my neck. I feel this rush of pain, nausea and vertigo that is nothing less than a whirlpool in my head. This is going on right now so I would be unable to speak with you but it seems I can type anyway.

The most intense head pain - there are too many kinds for me to list here - is known throughout the Chiari community as the ice pick headache. Every once in a while, you hear some horror story about someone being murdered with an ice pick but I'm not sure exactly how that would work. An ice pick headache feels as if someone has driven an ice pick into - usually the top of - your head. It hurts terribly and the pain is concentrated in a very small area the way you'd think an ice pick would feel. It's been a while since I stopped looking for blood but I would excuse any newbie who thought she had an actual wound. I get these ice pick headaches every day in the transitional seasons: Spring and Fall.

It just so happens that constant pain makes it very difficult to function. There were things that I took for granted that I simply cannot do anymore. Not being able to work was a serious blow to my ego. My wallet has gotten far more used to it but my ego feels the pain as if it were new. Unless my dreams come true and I make it as a professional writer, I will not have a career. I'm trying not to feel the burst of shame I felt when someone made this accusation against me: You don't plan on getting back to work. Since then, I have come to the conclusion that I don't have the resources to waste on a pointless attempt to return to work. Not being able to work closes wide swaths of life to me from not being able to invest money to not being able to go on vacation a few times each decade.

My jaw dropped when I was asked that serious question about working because I was losing ground in the ability to care for myself already. Getting a shower is an adventure in keeping my balance so it isn't an every day thing anymore. Having spina bifida makes this a bigger deal than it might be otherwise but it can't be pleasant. I make a special effort to be at my cleanest before leaving the house because I do have some pride left despite all the fraying. I am able to write fiction on certain days when my symptoms make sense but I've had to give up politics. When right wingers start spouting their bullshit, I unfriend them on Facebook and distance myself from them in the rest of my life. I have nothing spare for trying to change their minds in reasoned discourse.

I lack the energy to discipline myself enough to take basic steps in caring for myself. Who knows where the line is but I know I must be creeping up on a point where I would need some sort of nursing care to stay alive. On the average day of my life, I realize that it's probably only our relative poverty that keeps me out of a nursing home or hospice. I don't know what I should do but I know what I will do. I'll try to work on long term and short term projects, keep my faith going whether in God or Melissa and I will find times to enjoy life. I'll keep putting one foot in front of the other until I manage a major breakthrough or lose my footing and die in a very deep hole. I'm not ready to die.