Monday, August 5, 2013

I fell down an unwell

last November and was stuck there for a while. I wandered around the dank dark corridors wondering if something was wrong with me. I spent my time there reading books, doing internet research, and tracking what my body was doing, trying to figure out how I fell into this unwell and how I was going to get back out.

It started with dizziness October 2011. Like I was always on a boat- like the ground was going up and down undulating below me, sometimes this was merely unpleasant, sometimes I had to hold onto shelves to look around, sometimes it made me nauseous if I didn't walk really slowly, and sometimes it made me stagger around like a drunk person. The least pleasant was feeling like I was falling through the ground when standing still or sitting. Eventually my body got tired of that, so did it off and on, and mixed in other tricks that also came and went for no apparent reason.

I would be standing and suddenly it would feel like the rug was being pulled out from underneath me, and I would almost fall backward- flailing my arms, or grabbing onto furniture or a person to stabilize me. Last September I felt awful at Longwood Gardens when the person I grabbed was my son. He was 16 at the time so it wasn't like I pulled him down- but I am supposed to protect him, not as he said, "use me like a pole."

I did fall three times that year- 2012. Twice when bending over- my toes (front half of my feet) went up off the ground, I couldn't get them back down-and I fell down backward. I was just cuffing my pants. This feet thing also happened once getting my socks out of the sock drawer- and I had to hold onto that drawer and fight and fight to get my feet back down and restore my balance. I am better at it now-more prepared- because I know when I bend over my toes might go up, or my heels might come up.

The other time I fell into the refrigerator- because my husband was blocking my way at the counter- and my mind couldn't figure out what to do- I was moving forward- couldn't go to the side, couldn't stop- so my body just threw me back. I fell on the fridge shelves, and had to deal with my husband's "what the hell was that?" And he had to deal with my yelling at him for being in my way. It wasn't
the first time. I've had trouble walking around people in crowded areas, and through narrow spaces. I'll just be moving along like a normal person and then suddenly, my body becomes very heavy, and the resistance of walking through air is like moving through sand. And I struggle and use all my effort to move a very short distance. Husband says I look like a robot, all stiff and slow. He doesn't help me, just looks at me oddly. After a couple of minutes I get passed the situation and my body releases. And I go somewhere wide, open, or just go sit down.

Lately I've been edging back into this territory, with trouble walking around people in certain situations. And once again when I bend over now- like to feed the cat- my toes can suddenly come up off the floor- or my heels can come up off the floor, threatening my balance. My heels came up the other day when leaning forward over the sink brushing my teeth, and I toppled into the counter. Consequently I have noticed that I am preemptively leaning on counters to aid my balance.

I had buzzing, tingling, vibrating. Hot cold water sensations of head. Electric zaps. Electric spine. Sparkler bursts on my arms and legs- like someone was holding a fireworks sparkler up to me. Burning feet like walking on hot sand for ten minutes one day. And twice the sensation of walking on cotton balls. Etc. I haven't had this in many months. Except my left shin has started vibrating- while I wash dishes or brush my teeth- again.

Last fall I also had twitching above lips, and jaw. And these internal shaking feelings in my legs, mostly when I got up in the morning, or when I did something physical. If I work outside and squat down I know they will full on shake externally- but after a few seconds they stop. And I have realized it is easier to let them shake and then move on- then to try and keep them from shaking.There where some days when I felt so shaky and unstable I had to sit down in the tub to take a shower. And there were a few occurrences of what I call the herky jerky- where the arm goes side to side and the leg front and back teeter totters-glad I haven't had that in long long time.

Left arm jerks, happening mostly when stopped at a red light when driving, or when watching tv. And once it starts happening again, it will happen if I am startled, or if there is sudden noise or movement. If it is happening a lot, and if I am also having an exaggerated startle reflex, whole body jerking occasionally at sound or sudden movement- then it will also happen when trying to sleep.  After not having this since January- in June on vacation while bike riding it came back. Left arm jerks while trying to have relations with my husband...super embarrassing. After a little over two weeks of this- the jerks have receded.

Besides random, and directly being startled- sometimes jerks, left arm, lower legs, or full body, happen because I feel like I am being compressed. Like there is a band around my body, or one pulling down on my arms, and it gets wound tighter and tighter. I become a spring being wound tighter and tighter, and I can feel the tension building, and sometimes I can fight the feeling (sometimes I can't), but if a sudden sound comes, or movement, or stimulus, it is like a button is pushed, and bam, big jerk. So I have learned that if I feel this feeling while driving it is better to give in to a small jerk, then to hold it and risk suddenly having a big one.

Another thing that has come back to visit- is freeze frame. Again on vacation- tried to hand something to my husband, an ice cream cone, and my left hand wouldn't let go- it only lasted seconds, but he noticed. "Uh, are you handing this to me or not?"
"Yes, of course I am."
"then why aren't you letting go."
"God, I am trying. Can't you see that I am trying?"
It happened with something else too. And when packing up the trunk to go (I am the only one motivated enough to fit all our junk into the trunk) leaning into it, I got stuck. Again I am sure it was less than a minute, but for that minute while I kept thinking, okay lets get back out of the trunk now, and nothing happened, it was super frustrating and vaguely scary. My husband was nearby, and I said, "I'm stuck." and he said, "I can tell."

On the fourth of July the counterpart to this one, the one I used to get, visited me. I went to grab a deviled egg, and my left arm wouldn't bend back in. I tried and tried. My son made some comment about my being indecisive about which one I wanted, I got nervous that people might realize I was having trouble, and with my right arm went and got my left arm and pulled it in. It was just fine after that. It becomes sort of head trip. I am like, is this a physical problem or a psych problem? Do I just think I am trying to bend my arm, but really I'm not. ? This rarely happens but when it does it feels like I am trying to move my arm, and it shakes around, it just doesn't bend back in.

 One time it did scare me when I leaned over the passenger seat of my car to get something, and part way through lifting myself back up, my arms stopped lifting me up. I was stuck, and that time it had to have been a whole minute. It was exhausting, trying and trying, and nothing. Then suddenly my arms worked like normal, like nothing had happened.

Last November and December I had trouble with leg cramps, for a month and a half my calves cramped every day-while driving, eating, watching tv, sleeping. Forget trying to exercise. I became addicted to a heating pad. I don't know that it helped, but psychologically it made me feel better, and the heat was a distraction. My calves and foot have been threatening to this again- but haven't full on done it. Mostly now I feel like a tight band is across my calves and I'll get the start of a cramp feeling, a subtle ache starting to twist-and be very careful with how I move and so far so good.

I saw a neurologist in January. He was disinterested- totally unimpressed with the assortment of physical riffraff that is making such an impression on my life. But offered to treat whatever issue bothers me most. But since whatever is going on with me is a cast of rotating characters- I never know who is going to visit in any upcoming episode. So I wouldn't know which to try and prevent.

I was mad after that appointment, and for a pity party present, decided to give myself the gift of doing less.  Two weeks later I started feeling better.  I had a great three months, with only a few days of trouble each month, seeming to correspond with being several days after stuff like shoveling snow, and rearranging furniture. More activity also corresponded with times I cheated on my low wheat, no store bought icing new year's resolution. So I could still go with a food intolerance cause.

Still I felt so great in April I tried Tracy Anderson's the Method exercise program and less than a week in realized I had to give up the cardio dance. The world was starting to tilt again. Two weeks in with the floor exercises I was full blown awful- like I couldn't do the routine and function. So I had to stop.

Two weeks later I was fine again. And did well including the digging of holes, and planting of many hostas and hydrangeas. I did well until vacation mid June. Now over a month later I am still having problems. I don't know what to blame, all the packing and unpacking, third floor- three flights of stairs, daily bike rides, walks, the boardwalk, the sand. Eating donuts (wheat) with icing (fake) everyday. Plus more yard work and wheat and icing since then.  I need to blame something, so I can do something, or not do something.

So here I am, doing less again. Heck standing feels like doing a lot in this heat. And I'm going back to eating wheat only one day a week, and no more fake icing. We'll see if any of this helps. I guess the bottom line is, it does seem like I have some sort of a movement disorder. I can't say for sure that it isn't psychogenic (psychologically caused), but I looked that up and it doesn't seem to fit. But stuff like Parkinson's and MS don't seem to fit either. I am, feeling kinda like a head case. But as my husband says, "it doesn't really matter the cause, it is happening to you, it's not going to go completely away, so you just have to find ways to deal with it." We are thinking of it as my own unique sort of thing- a quirky body to go with an eccentric mind.

This whole post because I want to go rollerblading. But I am scared. I haven't fallen this year, stumbled into the wall just today, but haven't fallen.  I hate feeling like I can't do it, if I did it and had no problems including the week afterwards- I would feel so great. Rollerblading, music, summer! Ah, yes. But if I do it, and then I fall over backward while just standing still doing some mundane task later in the week- I will be devastated. My self image will plummet. I asked my husband his opinion, he looked at me like I was crazy, said, "Uh, no, you shouldn't try to go rollerblading. Your left arm is jerking again, the last thing I need is for you to fall." It bothers me that my life is like this again, one where everything I consider doing is being weighed against possible outcomes. But heck overall I am still pretty good. And enjoying reading the Mortal Instruments series.

Update-since this post has been in drafts-before July was over I got stuck in the closet (not like Tom Cruise). I reached up got clothing off a shelf- and then got stuck. My back was tilted back, and my left arm was straight and raised (kind of like in a superman flying position), and I couldn't move my arm down, or my back forward. I was making noises- eeerrr, as I struggled and tried and tried.  Out of my peripheral vision I could tell my husband had walked into the room and was accessing the situation. First he took my left arm and put it down- when he saw that I was still stuck, he moved my back forward. And I was able to reach and grab onto the doorframe- which was awesome because I was still feeling like I was being pulled backwards. So I had to stand like that for few minutes until I regained my balance. During which I said to my husband, "I was stuck." and he said, "I could see that." and I said, "Thanks for helping me."

We talked about it the next day- because it upset me, because it feels like a new thing- related to other things, but a particular concern I hadn't had before. He considers it just more of the same. He now just expects something to happen on a regular basis.
Which brings us to last week when I bent over to look at an ant in our foyer, and when I stood back up lost my balance, my arms where flailing backwards (like I was doing the backstroke) and I was stumbling backwards, and it felt like I was being pushed and shoved back, and I kept trying to grab onto something- went four feet- finally each hand struck a wall- and braced me- just before I crashed into the glass terrarium. Again had to stand there for a little while before regained balance. My husband heard me stomping about but assumed I was killing a bug or something. But you know I am more of a catch and release girl.
So yesterday I was weeding and had minor issues but was functional, we went out to eat as a family, and then went to Staples so my son could buy compressed air. And I couldn't get out of the car- I was leaning forward but no go. And my husband said, "I think your Mom is having trouble getting out of the car. I'm having flashbacks of Nana." Which upset me- I am 43, she was 80 when she had this problem. So I trouble shooted and with my hands got my left leg and moved onto the parking lot next to my right one, and was then able to get out. And I was just fine getting out at our other stops.

 ? I just don't get it. I don't know what to think about it, how to feel about it, what to do about it. But just adjust and adapt. And as long as it never progresses, never gets worse, I guess it is okay. Things have happened that have embarrassed me, and scared me, but I've never gotten hurt. Mostly it just makes me feel tired, and older than I should. My self image struggles. And when more stuff is happening I do less stuff unless someone else is around.

And I hate that there is no one to talk to about this stuff. I know I just end up sounding neurotic, and that is embarrassing. And it makes me feel vulnerable and stupid. I mean yeah I know this post is super boring. Who wants to read or listen to a person go on and on about every little quirk. I don't, and it is my post. And if I go around talking to people I know about it, I'll sound old and pathetic, a dreary debbie downer. Plus most of the time I am moving around and look just fine- so people would probably think I was making stuff up,  just some odd sort of attention seeking. And my husband doesn't like talking about it, because there is nothing he can do to help me, and if he worries about it at all he feels overwhelmed. But like I said before- it is summer, I'm on the fourth Mortal Instruments book, I am hanging out with my son, nothing is really wrong....this stuff just unsettles me at times.


Vesper said...

Taffiny, I'm so sorry to find out that you have health problems.
But you shouldn't just get used to them and accept these spells of dizziness or immobility, because they could be symptoms for who knows what else...
That neurologist is unbelievable! Please seek help elsewhere!
I'm worried about you.

Vesper said...

Also, I'm extremely sorry about your father's passing. I should have written then, but I just didn't have the heart. I'm very, very sorry.

Taffiny said...


Thank you for the condolences concerning my father. It still hasn't fully sunk in.

Thank you for caring, I appreciate what you are saying. But at this point I don't think there is much else I can do. But wait and see...(and take lots of b-12)

I think my neurologist experience was typical.

My off and on again rag tag assortment of invisible foes doesn't interest them, because it doesn't fit a known pattern of a known disease or disorder- so until or unless it does, all I can do, is claim this as my own neurosis.

Though I do hope there is no actual cause for concern, I do appreciate your concern. Because my family takes it so lightly. Like, "oh it is just Taff- so this week she got stuck in a closet, who cares..that is just the sort of thing she does now."

my husband just moved me back into place like a pose-able doll and walked away.

My son said that if I get stuck like that again I should fall to the ground so that I can move. ( I was tilted backwards I would have hit my head; but I like that he was thinking strategy.)

My mom was just like, "oh." A neutral uninterested sounding oh. Nothing else. If I was talking about seeing a cloud in the shape of a butterfly I'd get more of a response.

And it is always like that.

I intentionally don't mention the little things to them, but when something new happens that startles me, I do tell my husband, and my mom, as a way of dealing with and processing it myself. And my son as a way to prepare him that such and such might happen now.

And if any of them told me these things were happening to them- I wouldn't have a no reaction reaction.

I assume that they are trying to belittle whatever I am dealing with, not belittle me, but it doesn't feel that way.