Level | Description | Comment |
10 | Disabling | At this point I am resigned to “my chair” or will end up in the Emergency Room. Episodes can last from several seconds to a few days. I will usually have an episode of 2-5 days during a month. These are increasing in frequency as I try to raise my activity level. Sleep is impossible. Associated with this are periods of hallucination, including terrors after 72 hours without sleep. |
8 | Debilitating | There are things I just can’t do. These include simple things like bending, kneeling and lifting. Balance is precarious. Behavior is antisocial: combative and aggressive. Fatigue is overpowering. I reach this point usually each day by 7 PM. I perspire profusely from my forehead, face and neck due to pain. Some required items don’t get done. I need help with showering and dressing. |
6 | Incapacitating | I only choose to do those things that are simple and will not trigger higher pain levels. About half my energy is used to manage pain. Fatigue is substantial with long recovery periods. Pulse rate accelerates to 75 and above. Blood pressure rises. I wake to this level and try to keep it here during the day. I am usually a bit warm and will have brief periods of excessive perspiration. I only do things that are required to keep going. |
4 | Aggravating | I choose not to do things because of the pain level. Fatigue from pain management is apparent and recovery times start to increase. It is an effort to move. Everything I do hurts and annoys me. |
2 | Irritating | Pain is always noticeable, but does not prevent me from completing tasks. I am cautious, but mostly myself. |
0 | Pain Free | No pain is noticed outside normal pain from general activities |
I usually get out of bed with a pain level of 6. To give a standard idea of what this means, my pain is sort of like when you sleep in the wrong position. When you wake up you have a really sore neck that is tender to move, a slight headache and pins and needles in your foot and hand. Every movement is made slowly as I muster the stamina and as I become more alert. I begin the cognitive process to combat pain.
It takes about 20 minutes to have enough control to get out of bed and stand. My balance is very precarious for the first hour out of bed and I use extra caution by holding onto walls, bookcases etc. when I start to move about
This is about the best I feel. I have little or no touch sensation on my left side, especially my fingers. I must use my eyes to know where my hand is and be careful when cooking or other activities. I have frequently burned myself or cut my hand or fingers because I was not watching carefully. Mechanical or other tool-based activities have to be performed differently or not at all because of the lack of touch. I must be in motion constantly. Even sitting I will have a tendency to rock and shift. I must get up about every 45 minutes. If I am standing for 45 minutes, I must sit for a few.
On a good day I can maintain a level 6 until about 7 PM. By this time, I am so fatigued that the level rises and I will display anti-social behavior. This will include flashes of anger, cutting remarks, insensitivity and easy frustration. I will usually retire to my bedroom to avoid disrupting the family. I may try to read or study for a while. By 9 PM I must be in bed if I want to get 5 hours sleep before 6 when my family starts getting up. I sleep in 1-2 hour periods. I will wake up and have to change position, walk around and/or take additional medication to get back to sleep. It usually takes ½ hour to 1 ½ hours to get back to sleep. Some nights, I don’t get back to sleep, but will lie in bed and relax as much as possible.
Occasionally, I will experience the pain I knew just before surgery which is in the 9-10 levels. I have not discovered anything physical that triggers these. However, if I become over tired or work a little too long, too hard, I can count on them. They just “show up” and may last from a few seconds to a few days. These are characterized by waves of pain that I can only compare to having had a jolt of 220v while standing in the shower. It starts at the neck and goes down the left arm and left side to my left foot. It ends in my middle finger and middle toe. The actual waves may very in length and intensity. The most frustrating part after experiencing one of these waves is anticipating the next, which may or may not come. When I experience these pains, all I can do is sit in my recliner and try to relax. I will use TENS or NMES to distract me, but that is of only limited utility. It is impossible to sleep during these. My digestive system totally stops processing. I try to get fluids down, but it is impossible to process food. After two to three days I will begin hallucinating and display psychotic behaviors. I live in constant fear of these. It is impossible to sleep until these completely subside. The longest they have lasted is five days, after which I am totally exhausted and may “sleep” for two or three days.
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