-8- TRAPPED INSIDE MY BODY LONELINESS Loneliness. How do I go about describing the loneliness that I often feel? It hurts. Thinking about it hurts. Writing about it raises the hurt into my mind and heart once more. It is not easy to write about. Loneliness is a keystone to despair. It can eat away on the will to live, or even the will to try. It can destroy feelings of self worth. I find myself thinking : "If I was worthy of companionship/of being taken care of, I would not be so alone/ignored." ALONE IN A CROWDED ROOM You don't have to be physically alone to feel alone. I have felt the most alone in a crowded room, filled not with strangers but with people I know, who seemed to regard me as invisable. This invisability brings with it a terrible anguish. I want to be seen, I want to be interacted with. I want conversation, I want to laugh. I want to feel alive. IF I COULD DO IT MYSELF I WOULDN'T ASK It is humiliating to be avoided and ignored. friends and family take both me and the constraints of my illness forgrantted. I feel guilty for needing assistance and company, and shame when I for them. When others become annoyed at my even asking for their time, I feel very hurt. I really would much rather do for myself, as I did before. SOLITUDE IS NOT SOLITARY CONFINEMENT There are times when I enjoy not being around other people. When I am able to putter in my garden, I like to be able to focus upon enjoying it. I like the feel of the earth. It is my time to commune with nature. I feel whole, connected with all life, and at peace with myself. I draw spiritual energy from the garden at these times. It is my choice to be here, at this time. When I sit at my computer to write, or my drawing table to sketch, I also prefer to be alone. I like the house peaceful and quiet best. My illness causes me to confuse far too easily. Distractions are too difficult to block out when I am deep in inspiration or concentration. The sounds of the fish-tank waterfall or of the cats chasing each other in play are enough for me. It is my choice to be here, at this time. When I was stronger and well I would go for long walks, or I would ride my bike for miles. I would enjoy the freedom I felt as I confidently wandered the roads, trails, woodlands and beaches nearby my home. I cannot do these things now, and I miss them. It is not my choice not to be there, at this time. Most days I cannot putter in my garden. The weather may be too cold, wet, or hot. I may be too weak or in too much pain to leave the house. I can only look longingly out my window and remember those days when I could... and pray for future days when I can. ----- ANOTHER "VIRUS" It's happening again, Someone brought home a bug then everyone else brought home the bug. It jumped from person to person Missed a body on first pass caught it by the third Wonders be, it missed me! NOT! ^^^^ Everyone is down with the bug Some unfortunates got it twice Maybe there is bugs times two I hope not bugs times three. Everyone is over the bug Everyone but me Once again I'm down and out out for the count After three days I don't feel ill Just damaged The body's sluggish doesn't work The main computer is buggy again Systems burp and fail only to come back on line In about a month I'll feel my old self again I HOPE. P. Griffiths, 1992. ----- DIARY. SATURDAY. [6:30 pm] Mao cat beat me to the nap. He has the right idea. I need a rest and to hell with the time. I awoke this morning feeling quite lousy, being cold and achy to the bone. The rain came today, warm and soft for the most part and I felt better when I was outdoors than indoors today. I raked moss from the backyard for the garden. [10:40pm] A few hours of rest does a bit of good to body and soul. I did wake up hungry. My eyes have been bothersome today. At least twice the entire world has faded to grey for a few moments. I do not know if this is anything worth bothering the doctor over or not. It could be due to almost anything from just plain allergy to something very wrong with my eyes or brain or whatever. I didn't have my glasses on tonight while the boys and I were playing cards, but I had an unusually difficult time making out the cards just a few inches away. Annoying to be sure. If the phenomena continues I will call up the doctor's office on Monday for advise in this regard. I may be working too hard and the occipital area may be suffering some damage due to it or it may be a seizure manifestation. Too many possibilities - drug reactions, hay fever, the flu. The world does not blurr as much as it fogs up. The blurrs come and go with the level of fatigue and annoy and worry me. The fading to grey is another matter. I do not wish to lose my sight. I don't think I could cope with that. I'd really be fucked up then. Shit. There is just so very much that I want to do, to get done. I realize that I am pushing myself to my limits. I want to get that yard done up nicely even if it is a never ending series of projects and busy-work. It looks so nice and I feel so satisfied with my work so far. It does look good - and still I will stand out there and feel like crying for all that is not done. So massive is the task remaining that I feel overwhelmed by it all. But I am the only one to set the limits of the task. I am cruel to myself in this way, demanding that more be done than I am able to do. The body rebels again. The soul rebels as well. When will I ever learn to pace myself or put my well being ahead of the task at hand? I feel so foolish at times, which only serves to make matters worse. I still peg my worth on what I can do. Yet I cannot work at a wage job. All I can do is putter about, lost in my garden. Will I ever allow myself to stop and enjoy the fruits of my labor? I do try but I am just so driven that I feel as if I were to explode if I did not do something. So I rake and I dig and I pile and I plant and I forget time and trouble, infirmity and worries for awhile. It is an escape from a reality which is too painful to face. To work myself to exhaustion in my garden is the alternative to worrying myself to madness and despair with idle body and roaming thoughts. Too tired to think is too tired to despair. The method to madness it seems. ----- DIARY. TUESDAY. [1:35 pm] From the looks of the bedding [on the main bed], the cot was a good choice [for me] last night. Don letting Mao Cat in the bedroom at 8:30 am to get me up wasn't appreciated one bit. I was wide awake and off to go pee within minutes. It's a hot day today. I ran out of green bean seeds before I ran out of row. I added some paper to the worm box to help get rid of the smell and add bedding for the critters. I harvested some worm castings to add to the garden. More to harvest yet. The garden is growing quite well. I can't keep up with it. I don't know if I'll ever be able to get the guys help for that end of it. Sheesh. Don's tax refund arrived today. Hopefully mine will arrive shortly sa well. Mine heads off to my account at Scotia[bank] as soon as it gets here so Don can't squander it... only I can. So now I need my nap. Siesta time. More garden work to do, but first I need to relax and rest. No soaps or reading. Just sleep - hopefully. ----- DIARY. MONDAY. [1:20 pm] I just can't seem to get my body in gear today. Everything takes a tremendous effort, even breathing. I feel weak and downhearted. I have no idea what will be made for supper tonight being that the cupboards are quite bare again. The more food I buy, the more the guys eat. There never seems to be enough for very long. We go from feast to famine on a very regular basis around here. I hate that. And I am alone. It irks me when they all flock off but expect food to simply materialize for them. I have no strength for that sort of thing today. None at all. My leg is hurting again. Ouch. [1:35 pm] CJ came home a few minutes ago. He wants to set out a yard sale for a few hours. I doubt that there will be much money to be had today, but he can try if he likes. CJ told me not to worry about supper and to just sleep. The days of overly light sleep have caught up with me. He is right in the sleep bit, I do know that. I can't win against the ME by fighting it. I must sleep when I have the urge to sleep. I do feel guilty when there is work to be done and I have not the strength to do it. [11:45 pm] I slept away the afternoon and read away the evening. I feel quite ill in a general way. My leg hurts, my gut spasms, my body aches all over. My ears ring. I go from hot to cold to hot again. There is nothing I can do about feeling this way. Walking hurts and stairs are big agony. Frustration is the worst problem all told. I ache and I feel sick and life sucks. Too much to do. I hate being sick over and beyond the ongoing, daily levels of pain and limitation. I do hate feeling "hungover" when I didn't even earn it. I'm glad I can bemoan my frustrations here, since no one wants to listen to me say it anyhow. If I did complain to the guys they would only be cruel to me anyhow. I get no sympathy by complaining to them. But I do require an outlet for these frustrations. -----