I’ve been feeling guilty about not blogging but like I said before, I probably need to see my neuro. I’m past due. I may have to go in the hospital for IV prednisone and that takes about 5 days or more. I don’t know. I just know that I’m probably relapsing right now and in a sort of I don’t care mood. You know?
I have no get up and go and no drive right now. Music is the only thing that keeps my attention. People don’t. I try to reach out to some so that I can come back but I usually come up against brick walls. Everyone has a life and they are busy. No one feels like saying nothing we me, which to me is saying a lot. Do you know what I mean? The best conversations I’ve had with people or the best communication with people is when two people sit in a room and not say a word. It’s the perfect balance of comfort and communication. You don’t need the damn words to say what you’re thinking. I’ve never been the kind of woman who needs vocal assurances although they are nice when received.
I’m not feeling that way these days though. Zip, nada, just emptiness. It’s so unlike me that it frightens me. I’ve become the dirty socks sitting in the corner of the room that everyone walks around. At least for right now.
I have such few needs and I get upset when those needs are ignored or denied. The glass runs empty after a period of intense giving and driving people to do better for themselves and the same for me, driving me to do better. Sometimes I need nurturing as well to fill up my glass again, so that I can gleefully empty it out. But lately, I just can’t find any resources to fill me up with. Tis not a happy feeling. Everyone feels so far away.
My kids are gone with two of them denying me my place in their hearts. The other is just young, ignorant and self important although sweet. David is consumed by work. My ladies are chitter chatters that bore me although sweet and good huggers, and that’s about it.
My days are like this:
I get up in the morning after about 2-4 hours of sleep. I always wake up cheerful, wide-eyed and bushy tailed. I run off to the bathroom and then very carefully walk or crawl down the stairs on my bottom to get to the kitchen. I head straight for the coffee, my cigarettes, and my computer. It’s usually around 5-5:30 a.m.
I check my emails and respond to them. I check my usual web sites. I then check my stocks. I usually play a game to see how I’m doing in the “how quickly can I respond to things today” area. Then I set my mind to work on music. It doesn’t sound like much but all of this is time consuming. Then around 8:00 a.m., I let the dogs out and call my husband to feed them. He then goes back to bed.
He then gets up about an hour or so later and gets his breakfast and putzs with bills and stuff before going off to work around 10:00 a.m. I’m still in my room but he checks in to say good morning and asks if I need anything. Then off he goes. The rest of my day continues as it began until around 8 or so when my husband comes home. The only changes during the day are when I keep letting the dogs out or answer the door to get packages that I’ve sent out for. The phone seldom rings and when it does, I screen the calls. If the number is from “unknown”, I definitely don’t answer the phone, unless I’m really desperate to hear a voice.
Once in a while I break the pattern by actually going out to the craft store, or for cigarettes and some shopping. This doesn’t happen too often. I usually ask my husband to pick up things on the way home from work. The other break to the pattern is when I have Doctor Visits.
The end of the day finds me making dinner sometimes, occasionally watching a TV program and knitting. Usually I’m still in my room. My husband likes dead people and music. So after his dinner he does his genealogy work and listens to tunes he finds on the internet that he posts on Facebook. So we’re off in our different rooms on our computers traipsing through cyberspace. He stays up till about 12 or so then off to bed he goes. I’m still in my room.
I continue to do what I’ve done all day until around 2-2-30 a.m. then off I go to the stairs again. They fill me with terror. I climb up or crawl up the stairs and then to bed I go. Tomorrow will be like all tomorrows. Weekends are no different except that now there are two of us in separate rooms. I do make time to attempt to clean the house and all the other stuff I should do.
Most of my life is handled on the internet. I shop there by purchasing clothes, books, music, vitamins and groceries that are delivered to my home by Schwan’s. I live vicariously through interactions with people on web sites such as Indaba. My blog is good for me because I pretend that there is actually a person sitting there in the room with me listening to me talk. It’s make believe.
So in my make believe world, there are make believe people and friends. They are tiny little specks in cyberspace who respond to my typing fingers. I lurk in different forums and read a lot of interesting articles on the web. I rarely go on Facebook if only to check to see if anyone has contacted me and needs a response. I do a lot of planning on the web. I host one big event every year and that’s the World Wide Knitting in Public event. With the internet I get my ideas for themes and purchase supplies. I contact sponsors through the web and invitations are bulk emailed out. I shop for gifts for the knitters and spend a ton of money throwing the event.
That’s about the extent of it. I don’t want to make it feel like I am friendless. I have many friends but they all are busy with their lives and who wants to hand hold a person with MS? We can’t do much of anything and we have little to say because we haven’t been anywhere. Quite frankly, their conversations don’t interest me because I can’t remember who they are talking about and their relationship to them, so I can’t connect the dots when they are referring to someone I should know. Again, it’s make believe. I pretend to know when I don’t. This gets old. I know my friends love me. They know I love them back because Thursdays is my one day when I actually go out and give classes for free on knitting and crocheting. Some of these women have been with me for 10 years now. Every now and then I plan events for them. We spend the day somewhere else instead of our usual local.
Primarily, my days are spent alone from morning to night and in one room. So I get down and out at times because I’m always reaching out to people and they often don’t reach back the way I want them to. I’m reaching out now as I type this to the tiny little specks in cyberspace who are actual people with their fingers on keyboard such as mine. Our minds intertwine in a dance with no music. We cautiously check each other out and perhaps we befriend each other. But its make believe in a make believe world.
I am here because I have Multiple Sclerosis that causes me to withdraw from a former vital and active live. I am still that vital and active person given half a chance. I could do more if I had an adaptive vehicle where I could have my scooter lifted into a van and then arriving at my destination, it would take it down for me so that I could mobilize into shops or whatever. Have you checked out the prices on these vehicles? There is no way that I can afford one and I don’t want one that’s so old to have it break down on me because I am helpless to do anything about it. So I would need a newer one.
I am not make believe. I am warm, and breathe air. I am full of love and compassion. I like myself. Others like me. But I am like the music I write. I exist, but am not heard. Indaba Music gives me a vehicle for my music, now I need a vehicle for companionship in the flesh during my long days alone. Don’t get me wrong. I prefer my aloneness but only if I have the choice to be alone, not if it is forced upon me. Lately, that’s what I’m feeling and I don’t blame anyone. Who wants to hang around with a person who can only sit around? Okay, I’m making myself cry. So perhaps it’s time to end this blog.
Loneliness is the saddest feeling in the world. I’ve been that way since I was abandoned at 3 years old. Loneliness is my constant companion and no love can erase that feeling. It’s a part of my makeup and I know that in part the reason I am lonely is because I create it myself. I am too afraid to give 100% of myself to any one person because I’m afraid that I will get hurt.
I am here because I am not make believe. I am a person who needs just like anyone else even if I push people away at the same time I’m asking them to come in. It takes a person who really knows me to know that as I push away, I’m really begging them to be stubborn and hang around. My pushing away is just instinctively inbred in me.
I am here because I am not make believe. I am a musician, composer, poet, craftsman, avid reader, and writer. I am productive and I lead a good life. I’m not in bed with my woes. I sit up and go about my business perhaps crying here and there because I’m in pain, but I will not give in. I just figure out how to do things differently regardless of my pain, regardless of my loneliness, regardless of my sadness.
I am here because I am not make believe as you are not make believe, at least in your world. If I had a magic wand maybe I could make it so that others like me could bend distance and bring us together and these hands that are typing on the keyboard could then entwine with yours.