i'm just not fit for snow shoveling anymore
but it still needs to be done
so i did it
it's cold out there
i'm pretty dizzy in here, but it is done
for now
there is more snow falling
it won't be done for long
winter in massachusetts

From a post by jeywolf in without_meds:

I haven't really talked about how I've been doing lately. The "episodes" have been on an upswing. I have spent the majority of today immobile. This has not been an uncommon day. I don't like this eating into my life. On days I can, going for my walks is an act of defiance. I want to get back to being productive and perhaps be on the road to getting a job again. I am mentally ready to go back to work, but it is not a realistic option as long as I have these cycles.

However, I am making some progress on figuring the problem out. I was previously unaware that "vertigo" has a specific medical definition. The term is much more specific and I believe better suited than "dizzy" for the spells I've been having. More specifically, I am suffering bouts of central vertigo, as it often is accompanied by blurred vision, loss of fine motor control, sensory distortions, slurred speech, and ataxia. The question still remains as to what is causing it.

I have found two candidate conditions: multiple sclerosis and Behçet's disease. Of course there is a good chance that it is neither, but they do give me a direction to go in when I try to get this issue checked out again. I'm going to make an appointment with my primary care nurse (who I think is a bit of a quack) and see if she can set me up again with a neurologist or someone who can properly look into my symptoms. I'm getting quite tired of this.

I want to lie down. But, lying brings sleeping and sleeping brings waking and waking is not good at all. My falling down/seizure/dizzy/whatever the hell they are spells are particularly intense and particularly nasty upon waking and I attempt to limit waking to once a day — even a half-minute of slumber can be enough to set things off.

I've had several people complain about my appearance, saying something must be done. I look to ratty, my clothes are often tattered. I should die my hair or at least brush it more often. Wear lipstick. Do something.

However, I like how I look. I feel comfortable in my own skin. I've stopped trying to fit into a mold or a subculture. I'm exploring my own ground. And while I may get a little down about my weight now and again, I'm finding peace there too. I don't want to go back to being the bulimic stick I was years ago. I might be "overweight", but I'm pretty healthy (well, except for the falling down/seizure/twitchy/dizzy/whatever the hell they are spells).

I don't mind that people think I look like some "crazy woman". I am a crazy woman. I embrace that. It took me a long time to be comfortable in my skin. To be comfortable being what I am. I have come to realize of late that beauty is not about who or what you are, it is about not fighting who or what you are. I'm letting myself be me, and I like it.

I am not saying that there isn't room for improvement or bettering. While I have come far, I have a long way to go still. But as I move ahead I want to add more than replace. I no longer don't want to be me, and those who want me different will have to get used to that.

I've been drifting away the last several days. The dizzy spells and twitchiness have enveloped me. I cannot move and flicker out. I fight this place, it is hard, but I am not giving up.

Sometimes I end up caught in a nasty cycle in which I have one of my "episodes", can't get up, and fall asleep. My "episodes" are more common and intense right after waking, and in these cycles I'll wake right into another episode, not be able to get up, and fall asleep again. Yesterday, I spent 3 hours on the couch in such a cycle – drifting in and out of consciousness.

I was planning a trip to Maine to see invalid_userid this weekend, but purpleglitter convinced me I should wait until the current wave subsides. However, in preparing for the trip I did find out that the bus route to Maine was quicker, cheaper, and more frequent than I had previously thought. This will make the prospect of making plans to visit less daunting in the future.

Project Schedule has not happened since Monday. I wonder if perhaps the concept is flawed. I've always had large portions of my work day where I could not be productive. I was able to compensate before, why not now? A refined and rigid schedule leaves no room for compensation. However, I am not sure if I should give up Project Schedule until I come up with a better plan to increase my productivity and ready myself for re-entry into employment.

Yesterday went well until the last half hour of the schedule. I became very twitchy and dizzy and couldn't complete my cleaning.

I've always had downtime during the day when I couldn't accomplish much. These spells are in no way new. I always made up for them because I was very good at what I did. I worked very fast and my downtime was rarely noticed. I'm very lucky in that regard, for if I were not twice as efficient at my tasks I wouldn't have been able to hold down a job even then.

For breakfast yesterday I had a veggie burger with basil mozzarella cheese and barbecue sauce; for lunch I had pizza balls with basil mozzarella, faux ham, and faux turkey topped with parmesan cheese; for dinner I had spaghetti in pizza sauce with parmesan cheese; for my healthy snack I had cashews.

Food went well, but I only got half of my half hour of exercise in with a walk up to Arlington Center and back in last evening's thunderstorm. Getting in my exercise is going to be hard right now because I've been having lots of wobbly/dizzy/fally/seizurey/whatever-the-hell-who-knows-the-doctors-apparently-don't episodes, but I will not let that be an excuse. I will continue to try to make Project Three Meals work. I refuse to let this crap control my life.

I've been having falling/dizzy spells/seizure/whatever the fuck it is issues again. I've had felt a bit more wobbly over the last week, but it's really spiked the last couple days. According to merryperseis, my eyes dilated at the beginning of the episode on the bus coming home from the North End on Friday. This does not surprise me, as one of the major symptoms of the episodes is muscle weakness and poor coordination which often makes eye focus difficult, so eye dilation would make sense. However, as this is only time eye dilation has been noted in conjunction with one of these episodes, and I would prefer it to be noted again to designate it as a symptom instead of as a coincidence.

Yesterday was much worse than Friday. My morning walk an with taiaselene was without incident. I was fine until the afternoon, which went horribly. An incident that while waxing and waning lasted for well over an hour. There was in addition another significant episode in the evening, though shorter and less severe than the afternoon one.

Of course, there is no way of really knowing where this is going and when the cycle will wane again. I am using a cane/staff again when I go out and will until this bares itself out. I will not let these episodes keep me from going for my walks and other outdoor activities. I refuse to let this control my life. Sure, that increases the chance that I might be sent to the emergency room by the unduly worried — but that just means I'll have an opportunity for a cathartic release of anger at whatever asshole doctor I get. Works for me.

Food perfect. For breakfast I had spaghetti in tomatoe sauce with spinach and parmesan cheese; for lunch I had Spanish rice with faux pork; for dinner zarthon took me out to Rudy's where I had enchiladas verdes, chili con queso, and jalapeño poppers; for my healthy snack I had a caffeinated cliff bar. I wanted to walk home from Rudy's for my exercise, but both zarthon and purpleglitter were very much against the idea because of the number of spells I've been having lately. They insisted I ride home with them, which I did. Sooner or later I'm just going to have to say fuck it and get in my exercise regardless of the spells. I have to live my life, and that means taking risks.

I have been using my staff/cane to get around again. The gorilla glue works well holding it together, but fails when the staff is subjected to lateral forces. To strengthen the break in this regard, I tightly wound twine around it. I then coated the twine with wood glue to keep it from unraveling. I'm contemplating staining the twine, because it is much lighter than the rest of the staff. I have the stain, I just haven't decided if I want to.

I've been getting comments that my staff looks like a shillelagh. I have heard "Nice shillelagh." several times the past couple days. While I never intended it to be a shillelagh, the comparison is oddly pleasing to me.

Didn't do so well again at Project Three Meals today, but i keep going. I had pizza for breakfast, For lunch I had gluten, mushrooms, and baby corn marinated in soy sauce then stir fried. For my healthy snack I had a pickle. zarthon took purpleglitter and me out to Rudy's for dinner where I had chili con queso, enchiladas verdes, and fried ice cream. I also had a cry baby italian ice from the Ice Stand by Spy Pond.

I didn't get any exercise of note in. Exercise has proved to be a difficult issue because I've been having more issues with dizziness or whatever the hell these spells are where I get twitchy and have difficulty walking. They got better for a while, but seem to be waxing again. Nothing near what they were at their peak last winter and it's not really a good excuse for not getting my exercise in, but it is a mental deterrent to doing so. I need to just fucking go out and take my walks.

I can do better. I will do better.

these "episodes" "dizzy spells" "seizures"
whatever the fuck they are to be called
they are being more defined now by when they aren't happening than when they are
i am not having good days
i am just barely making it
the razors, the pills, the trains
all seem more tempting
but tuesday is just 4 days away
promise and pessimism there meet
if he cannot help me
if he cannot say what is
then there will be no reason to believe this decent will not continue
but he may be able to give me a magic pill
a way out of this spiral
a salvation in a bottle

four days
live
die
hope
forget
breathe
release

I went to meet scattermew at the Diesel yesterday. I got there on time, sitting along the wall towards the back. I waited for about an hour occasionally looking for her. I never saw her. Once I arrived home, I called her and asked her what happened. Apparently she was only a couple seats down from me, arriving just shortly after I did, but I never saw her. That's understandable, because while I was fine when i arrived at the diesel, I became progressively more out of it as I sat there. My looking around for her was not done efficiently because I didn't have the focus (visually or mentally) to do an efficient scan.

On my way home my cane broke in two. I knew it was going to happen soon, but it still made me much sad. I am now using the cane I'm making from the windfall branch I found by Spy Pond. I am far from done working on it, but it is all I have for now, so even in it's transitional state it will have to do. I will continue to work on it and hopefully finish the job in the near future.

These things happen, but it disheartens me because I only have a limited amount of funds and physical stamina to go out and meet people, and while I like being social I'm beginning to think that at this point it may be more trouble than it's worth.

Walking back from Mass Convenience, I was accosted by a man who looked around 40 and seemed to be slightly inebriated yelling at me "You don't need a cane.". It is exactly attitudes like that that made me resist using a cane for so long. I realize that a good deal of the time I can walk perfectly fine without a cane. But during my episodes, which have been very frequent of late, it is very hard to walk and often very hard to simply stand. I have managed to stay off the ground a good many times because of my cane, and when I do end up on the ground the can helps me get back up. There are also many times where I am able to remain mobile with the help of the cane when without it I would be stuck. With balance and coordination so often issues, the cane has given me much more confidence when i go out, and I've been able to do a lot more since I've been using it. I DON"T WANT TO HAVE TO CARRY A CANE, BUT RIGHT NOW I DON"T SEE ANY OTHER CHOICE.

-----

I did manage to do some work on my new cane today, as the cracks in my old one are getting larger and it is only a matter of time before it snaps. I would like to stop using it BEFORE that happens, as I rather like it and would like to keep it around in one piece even if I no longer use it. I sawed off the excess length pealed off the easily removable bark. Most of the bark was not easily taken off, and I began sanding. I don't have enough sand paper to finish the job, and even after I pick some up the sanding will probably be several days work as I can only sustain a small periods of vigorous activity these days. There is some rot underneath the bark and I found a strange bug that I did not recognise under the bark that I was able to pry off, but that those things should not be surprising as the branch was lying on the soft earth by Spy Pond for who knows how long. But, it is sturdy and despite its flaws I still believe it will make a fine cane.

I've been having "episodes" all day, more intense since around 1pm. Dizzy, twitchy, fally. More and more often I'm briefly losing consciousness. What was before extremely rare is now uncommon. I don't like the change. I've been trapped in the episode cycle for the last several hours and haven't been able to get out of it. Coming in waves, it sometimes feels I may break free then I'm pushed back down.

This morning, zarthon picked me up for therapy today and took me to the Arlington Diner for breakfast beforehand. Unfortunately, my therapist called to cancel after we had left. I waited over a half hour for her before leaving the clinic. Very frustrating because the people at the sign-in should have known that my appointment was canceled and yet did nothing. I fell down trying to find where zarthon had parked and some idiot bitch (there's some of that venom I was talking about) got security because I wouldn't get up. She didn't call because she was worried, she made that clear by the manner in which she addressed me and by barking at a nice man trying to help me up to not give me a hand. She escorted escorted the nice man to the building leaving me alone on the pavement in the parking lot. She did it because she didn't think the situation looked "proper", because she was another annoying busybody in a world full of annoying busybodies. I did manage to get up with the help of my damaged but still functional cane before security accosted me.

I talked to my therapist on the phone when I got home and have a new appointment Thursday that zarthon will drive me to.

In my last post I mentioned I've been grumpy and venomous towards others. However, for the most part I have not confronted them, it is more in the vein of complaining about at length. And while some of these people have done things I should be complaining about, the amount of complaining I'm doing and the amount of vitriol I'm doing it with often does not match the deeds done. Of course now I'm beating myself up over that. I'm bad. And to add to that I can barely type right now. I'm almost ready to fall off the seat. Everything is dizzy and twitch. I don'

I've been very dizzy and fally today with a smaller degree of twitchiness. I did manage to make it to dan4th's New Year's waffle party. I particularly liked dan4th's gingerbread waffles. I enjoyed being at the party and having good talkings with the people, familiar and new, that were there. When it came time to leave, dan4th offered me a ride because I had been having "dizzy" episodes off and on while at the party. I declined because I felt guilty about taking him away from the party. I didn't want to be a burden. That was a mistake on my part. I made it halfway to the bus stop from dan4h's house when I ended up on the snow the first time. Went down again across the street from the stop. And again waiting at the stop for the bus. The third time, a passerby was worried and called the authorities. Luckily I was able to get up and on a bus before they arrived. However, I had an unusually intense episode while sitting on the bus and lost consciousness. I ended up missing my stop and getting off at Stop & Shop. Stop & Shop is a 20-30 minute walk to the house_of_clocks when I'm doing well, and I didn't have enough money to get back on the bus. I used my last 50¢ to call purpleglitter and ask her for a ride home. Unfortunately she was in Braintree with zarthon and couldn't help me, so I had to walk. It was quite cold and the walk didn't begin well. Almost a half hour after I left Stop & Shop, I had ended up on the ground four times and had traversed relatively little distance. I almost ended up crying in the snow because I didn't see how I was going to make it home. However, I did end up breaking out of the episode cycle and was soon able to walk the rest of the way home largely without problem. Even so, I felt a large wave of trappedness. I don't like feeling that I cannot leave the house without depending on the assistance of others. I don't want people to feel obligated to give me a ride home every time I visit them. I'm worried that people won't want to see me because of that. I feel like I was already a burden and now I'm becoming a greater and greater one. I know that things may not remain this way, that when I see my neurologist again I might get meds that might help me. But with so much fighting, I don't have faith in the medical establishment anymore. I don't have faith things will get better. Maybe I should be more optimistic, but I can't get myself to be. I just can't.