Anxiety, Avoidance, And Possile Solutions: A Work In Progress

Warning: This is a longer post than normal, so bear with me.

OK. This post has been a long time coming. Two months or so actually. Anxiety. I've always been anxious. Since I was a kid, I was always worried about something. Up until about 10 years ago I've been able to deal with it fairly well. Over the last 10 years, but particularly the last two or three, my anxiety has increased. I've had more panic attacks, and I've let that anxiety and fear hold me back from doing things. If you've ever had a panic attack, you know how frightening it is. You can't control your breathing, your heart starts beating out of your chest, you start shaking, sweating, and your mind goes in a thousand directions at once.

I know what triggers my panic attacks, and unfortunately this cause is a reality for people with cerebral palsy. Falling. I've talked about my fear of falling before, and for the most part I do deal with that well. There is however one instance that my anxiety goes through the roof when it comes to falling. The dreaded shower. I've talked about my scary shower incident several years ago, and I honestly don't think about that day very often. That's because I know that day will not repeat itself because I no longer use the suction cup grab bar. I have a safety bar screwed into the wall now which is way safer. I take all the safety precautions I can think of when it comes to getting in and out of the shower.

I'm going to go into detail with my shower anxiety not because I really want to, but because I hope my experience will help someone else out there who might be dealing with the same thing. Whether you have cerebral palsy, multiple sclerosis, any other type of disability that makes it hard to balance, or if you're just getting older and have lost some stability, I hope my story can help you attack the problem head on and move forward.

Let's start at the beginning. How I get in and out of the shower...past and present. Over the years, I have experimented with different ways of getting in and out of the shower.

Childhood Strategy:

As I kid, I used to use my parent's shower which is a big wide-open space. To get into the shower, you have to go down a small step. In my early childhood, my mom helped me in and out. For the longest time I was able to stand up and move around while I showered. I don't remember how old I was, but around 11, 12, or 13, I started getting in and out on my own. While I was in the middle of washing, I slipped and fell on my behind. I didn't get hurt, but I was startled. I can't remember the length of time, but I slipped and fell two more times over weeks, months, I don't know. After the third time I said enough was enough and I just sat on my butt and showered that way from that point on.. I also started getting on the floor and scooting down the step when I got in.

College Strategy:

Moving on to college, I had a private bathroom that I shared with three other girls. It was a tub style shower, so I had to get in and out of a bath tub. We put on a safety bar that clamped on to the side of the tub. Once I got into the tub, I would get on my knees and shower. Then somehow managed to flip over onto my butt so I could shave. Then get back onto my knees, stand up and get out using the bar. I never had any problems with that back then.

WA State Apartment Strategy:

I had my first shower chair in 1999 or 2000. That helped a ton. My husband and I were living in an apartment in the Seattle area, and we had maintenance come over and install a safety bar inside the tub shower. I did well with that for the most part. Every now and then I would get nervous getting out of the tub. I think it was because the bar was on the inside and I had nothing to hold onto with my outside hand. But I dealt with it just fine.

Current House Strategy:

Moving on to the house we now live in. It's once again a tub-style shower. You already know about the suction cup bar, and that I now have a safety bar on the wall outside of the shower. I still have a shower chair, and to avoid slipping there's a thick bathroom rug on the tile floor so there's no danger. This is the tub shower in which I've experimented with different ways of getting in and out. I used to get in and out standing up the entire time. I'm not sure when it was , but sometime in the last three or four years I started to sit down on my chair part way through the getting in process. I'd put my left leg in, sit down, and then swing my right leg in after. I'd reverse that process to get out. That's worked well for me the last several years.

I've mentioned the whole "jerk move" feeling I get from time time. Sometimes when my neck is out of alignment in just the right way, I get the sensation of being pulled back and to the left. That feeling plays a big part when I get in and out of the shower. I feel very unstable, and that causes me to doubt myself and hesitate. For the most part that feeling is gone, as long as I get my back and neck adjusted regularly. For the last month or so, I've been having a hard time getting my right leg into the tub, even when I'm already sitting down. My left leg tends to tighten up and my left knee goes inward and blocks my right leg from coming in (if that makes sense).

I discovered the tub floor was the culprit. My left foot would slip when I lifted my right leg up. Now I'm sitting down you understand, but it still feels like I'm going to fall off the seat. Is that even possible, to fall out of a chair? I suppose if you lean far enough over to one side you'd eventually fall off. Or if you lean forward (which I tend to do in order to not fall backward) enough and your feet slip out from under you. But is that realistic? To stop my left foot from sliding, I'd put a hand towel under my left foot. That kind of helped, but it was still precarious.

Avoidance:

Onto the avoidance factor of this post. About two months ago, my anxiety about getting in and out of the shower got so bad, I unconsciously started to delay showering. I would avoid exercising because if I exercised, I would get sweaty and need to shower. The less I exercise, the harder it is to move around. It was a viscous cycle. And when I absolutely had to shower, I would get so anxious, that I would not be able to move. Every time I tried to get out of the shower, I would panic. It got so bad one day, I had to call my husband (I started bringing my phone in with me after the suction cup incident) to help me out.

A little over a month ago, I decided to take a Xanax an hour before I took a shower, to let my mind calm down, relax my muscles, and to let myself know that it is possible. Before that could happen though, I went into the bathroom that morning, not knowing there was water on the floor. I went into the bathroom and slipped on the floor (the tile floor we have is deadly, I hate it). I didn't fall, but came pretty close. My panic went through the roof. My anxiety had been building up for several days, and I was anticipating my shower later that day. I managed to get back into the bedroom before the full blown panic attack hit. Then my body just did its thing. Hyperventilating, sweating, shaking, heart and mind racing uncontrollably. My husband came in when he realized what happened, and calmed me down. He told me to take a Xanax right then and there. I remember saying in a squeaky voice "I'm thinking about it". He laughed (not at me but at my reluctance to take a pill) and told me to take one. My reaction is exactly the reason to take one. So I took one and I felt better after about 10 to 15 minutes. The shower that day went smoothly also.

Solutions (on-going):

After that panic attack, we made another adjustment to the tub. First we tried sticky tape on the tub floor. That didn't cut it. We then tried a wooden bath mat. That's been working well so far. That helps my left foot from slipping. I'm still dealing with the falling feeling while sitting though. That's been a problem for a while now, and I don't know what to do about it. I'd blame it on the "jerk move", but it's not the same sensation. It feels like the falling sensation you get when you're just about to fall asleep. I get that feeling when I'm awake too. More often now than I used to. It's weird. Maybe my neck is out, who knows. All I know is I'm tired of being anxious when I have to shower.

Here are some pictures of my current set-up.

Shower Safety Bar

Shower Chair And Wooden Bath Mat (and the rug I use still draped over the side of the tub)

(photo credit: Me)

I'm doing my best to not fixate on it. I have a tendency to hyper focus on things that make me nervous. I have to practice the mindful thinking again. Focus on the present moment, and not worry about something until it's time to deal with it (and even then, just go with the flow). Hard to put that into practice though sometimes. I'm actually thinking about taking a Xanax today before I shower. I've been getting more and more anxious about it again. I just feel like I'm going to fall off the shower chair now. And my left leg is still blocking my right from getting in and out. It's a work in progress that's for sure. I'm hoping that by taking one today my confidence will rise, and I can go a few weeks without fear. If I let my anxiety build and build I'm headed for a panic attack for sure. So I need to cut it off at the pass.

This post is a huge one, but I hope this may be of some help to others who have anxiety, whether it's shower related or not. To those of you who read the whole way through, thank you! It does help to get it all out there. And to those of you with an anxiety problem, just take in one minute at a time (rather than one day at a time like I used to say).

Mileage Monday: Short And Quick

Here are some more of the pictures I have saved from the virtual walk site from the last several weeks. I mentioned in my last Mileage Monday post that I've been dealing with anxiety and avoidance issues. I'm getting a hold of it though, at least to some degree. I do intend to write about it, but it is a touchy subject. It's personal and hard to talk about sometimes because it makes me feel uncomfortable. But I figure there are other people with cerebral palsy who are dealing with the same set backs and fears, so why not share my experience? That's what this whole blog is for right? To share my journey and how I deal with my situation. I won't be "cured" of anxiety, but I can learn to deal with it and keep moving forward. It's no fun to go through, and is downright scary sometimes.

Onward and upward. Here are some more pictures from the cross country walk.

Mile 868 (Leslie Sansone for 2.4 miles)

Mile 869 (elliptical for 1 mile)

Mile 872 (elliptical for 1 mile and Leslie Sansone for 2.4 miles)

Mile 872.4 (marched in place watching The Biggest Loser for .5 mile)

Mile 874.8 (Leslie Sansone for 2.4 miles)

Mile 877.2 (Leslie Sansone for 2.4 miles)

(photo credit - Virtual Walk Site)

I'm almost current with the pictures. I have three left. Now if I can just get my butt up and moving I can add to those pictures. It seems I've lost my mojo. I'm nowhere near as consistent with exercise as I once was. I'll get there again, I just need to focus and DO IT. Keep moving!

World Cerebral Palsy Day 2014 (warning long)

(photo credit - http://wellnessdocdfw.com/back_pain__upper)

Last year, I wrote something for World Cerebral Palsy Day. In October 2013 I posted a chart of some statistics about CP, along with where I fall in the various categories. I found out about the yearly event two years ago.

This year, I struggled to figure out what to post. Until today actually. I don't think I've really written about this topic in depth. Aging and cerebral palsy. I've mentioned that my aches and pains have gotten more frequent in the last several years, but haven't really related it to my cerebral palsy, just with my aging.

Why am I bringing this up today? Because I hurt. A lot. Plain and simple. Why do I hurt? Because on Sunday, I stumbled and had to catch myself from falling. I was going into the laundry room and lost my balance. I caught myself by grabbing the door frame. My upper back and arms tightened up like usual when I catch myself. No big deal.

Monday comes along and my upper back is a little sore, and it hurts ever so slightly to turn my head. I thought all day "What did I do?", and couldn't think of anything. Until that night, when it happened again only not as severe. A light bulb turned on. "That's what I did!"

Then comes Tuesday. My husband and I took a walk in the early morning with our niece. We brought the two dogs with us. Jax (our dog) was wearing a prong collar because he's just a tad hyper (sarcasm). Every time Jax yelped (he got too far ahead and pronged himself), I would jump and have to fight not to fall. In doing so, I would cling to my husband's arm (in the past when walking with my older sister I would hold on to her upper arm, and when I did this she called my hand the claw because I would cling so hard).

I jumped and fought about four or five times. Didn't fall once, but it was annoying. I thought maybe the "jerk move" was back, but it didn't quite feel the same. I thought about it Sunday as well, and if it was the jerk move, it was only a slight case of it.

Wednesday morning comes along, and I could barely sit up in bed. My upper back screamed every time I tried to sit up. I finally managed, but it took a while. I wondered "What did I do?". My husband enlightened me by saying "You went for a walk.". Well, just going for a ten minute walk wouldn't put me in major pain like this. Then it dawned on me. All the fighting to stay upright that I did. Yup, mystery solved.

As a kid when I fought not to fall, I don't remember any after effects. Heck, sometimes I didn't bother to fight and just fell. Sometimes it was easier to fall and get it over with. Now I fight like the dickens not to fall. When I did fight as a kid, I never hurt like this. My age is catching up to me.

In a little less than two months I'll be officially "over the hill" (is that what they still call 40?). Everybody is different. Some people turn 40 and have no aches and pains at all, others have a whole bunch of aches and pains. Is it genetics? Is it how active a person is or is not? It is a disability? What is it exactly that have certain people hurt more than others as they age?

For me, I think it's a combination of my cerebral palsy and the fact that from age 19 to 30 I basically wasn't physically active. If I had stayed active during that time, would I hurt this much? My CP affects my left leg and right arm. Basically from both my hips down and also my neck are my painful areas. How I hold my body puts strain on muscles and tendons that a "normal" person doesn't experience. In order to not fall, I lean over so I can grab something, or I'll place my legs in an unnatural (yet more stable) position to have better balance.

In doing so, the tendons, ligaments, and muscles shift and strain aggressively. Over time, this makes it painful to do certain things. I did some pretty decent damage to my knees during the years I wasn't active. I went to physical therapy for my knee pain in 2000 and was prescribed exercises to improve the muscles. I still do those exercises to this day, and I rarely have knee pain any more. It's actually my left hip that I worry about now.

In 2008, I got off my butt, lost 35 pounds and am more active than I was. I still am not as active as I should be. I exercise for an hour maybe, five days a week. But I still sit the rest of the time. I need to get up and move more. Not just during my workouts. I need to get up and move every hour at least. I need to make that a daily habit, to get up every hour for 5 minutes at least. March in place for five, jump on the elliptical for five. Something.

I don't know if implementing that strategy will help with my pain or not. Please don't think that I'm in pain all the time. I'm not. But lately, when I am in pain, it hurts way worse than it used to. Right now, if I move and the pain hits, I have to hold my breath until it passes.

Not sure where I've going with this. Just sharing my experience with cerebral palsy and aging. To put it bluntly, it sucks. I've been sitting here in my computer chair (probably the most comfortable place for me to sit), and I know once I start to get up it is going to hurt like a you know what. So here goes nothing!

Explaining The "Jerk Move" Better.

(photo credit - eofdreams.com)

I had a really rough week last week with my balance. The "jerk move" returned with a vengeance. I actually think it was creeping up on me over a few days, and I didn't notice it until it got BAD. I haven't had it that bad since January of 2013. I'll try and explain what the "jerk move" is a little better than I did before.

What do I feel when the jerk move happens? I feel like someone has a grip on my left hip and is tugging me to the left and backward. It normally happens when I try to take a step with my left foot. My left leg will not swing forward far enough, I'll hesitate, and I'll sort of do this funny looking jerk. After I jerk, I can move for a little bit, until it happens again. I'll often feel this tugging sensation just standing in one spot

Another thing that happens during this"bad balance" time is what I call "spontaneous sit downs". I'll stand up and immediately sit back down uncontrollably. This jerk move sensation is uncomfortable and very annoying. There's absolutely nothing I can do to stop it other than getting my butt into the chiropractor ASAP. And that's what I did.

I talked with my chiropractor back in January 2013 about what would cause this. He said it stems from my neck being out of alignment in a certain way. I always thought it was from my lower back or hip being out of whack. I feel it in my hip and lower back because those muscles are compensating for the bad balance and trying to fight not to fall.

This past Tuesday I went in to get this issue fixed, and I had giant knots in my left hip and lower left back. He worked on that area for a while, and while it was a bit painful, it also felt good to have that area relax. Even now, about five days later, I still feel achy and stiff in that area. I'm also dealing with the lingering lack of confidence due to this.

I'm still anticipating the tugging feeling so I'm hesitating with my movements. Particularly when I'm not wearing shoes. But I don't feel that tugging sensation, so my mind is just being mean to me. I just need to work through it, and keep moving.

Hopefully this is a better explanation than my last attempt. It's hard to explain exactly what it feels like. This is as close as I can get.

FitBit One Review

(photo credit: Me)

Pictured from left to write: charger, dime (for size comparison), One tracker, One clip holder

I've had my FitBit One for about two weeks. I love it! It's almost exactly like the Force, only you clip in to your clothing. You can clip it to either your waist band, your shoe, or for the ladies, your bra. I always have it on my shoe. Since I have cerebral palsy, my balance is so much better when I wear shoes. My lack of balance is not only due to my cerebral palsy, but also my lack of confidence and fear of falling. I'm not as bad as I once was, but I still have work to do.

Back to the FitBit One. The tracker itself is a bit larger than the tracker of the FitBit Flex. The FitBit One can be placed in a clip holder during the day, and slipped into a wrist sleeve at night to track your sleep. The clip holder is made from a silicone rubber material and has a very sturdy clip. It's easy to hook it to your clothing, and seems to stay put for the most part. The opening for the holder is fairly secure. I worry about the tracker falling out of the holder when I'm on the floor playing ball with the dog. Since I clip it to my shoe, the tracker is moving against the floor and can pop out. It popped out on my this morning. That was the first time it's done that though, so I'm thinking the opening of the holder loses it's sturdiness after a while. It gets worn out. I'll keep my eye on that. I might have to be creative if it pops out frequently. Rubber band maybe?

(photo credit: Me)

Pictured: One sleep sleeve

The wrist sleeve at night is secure, but it's a bit large. I got used to having something on my wrist at night since I had both the Fitbit Flex and the FitBit Force, so it's not too bothersome for me. It might take some getting used to otherwise. You slip the tracker into a small slit on the wrist sleeve, and it rests in a little pocket for the night. The sleeve closes with velcro, and so far it's holding up. I've only had it a few weeks, so over time it may lose it's stickiness, but so far so good. Like the Force, press and hold the button until you feel it vibrate. It will then be is sleep mode and you'll see a stopwatch start to count upwards. In the morning, press and hold the button again until you feel it vibrate and it will be out of sleep mode.

The tracker has a display screen just like the FitBit Force. You scroll through all of your goals by pressing the button. The one thing the One has on the display screen that the Force doesn't is a flower that grows the closer you get to your main goal. The flower gets more petals the closer you get to your goal.

Overall, my favorite FitBit tracker is the One. My reasoning is this. While I love the aspect of the wrist band, I find they're not accurate for my step tracking. Because I have cerebral palsy, I sit for most of the day. I do my elliptical and my Leslie Sansone workouts, but other than that, I roll around in my computer chair and the old wheel chair (yes still...stupid fear). So, by keeping the tracker on my shoe, I get a better idea of just how many steps I take in a day. On my non-exercise days, I get between 1,000 and 2,000 steps. Not good. On my exercise days, depending on which workout I do, I get between 4,000 and 7,000 a day. Better, but still not the recommended 10,000 steps a day.

I plan on doing some testing with the FitBit One. I'll wear it on different parts of my body and see how accurate it is. I plan to wear it on my shoe (do that already), my waist band, and my bra. I'll see how much my steps vary from one area to the other. I did do a quick test when I first got it, and was a bit perturbed by the waist band. I did 50 steps marching in place. When it was on my shoe, it registered 61 steps. It registered 0 steps on my waist band. On my bra it registered 81. So, quite a difference. I don't know why it didn't register any steps on my waist band. I'll re-do that test and see what happens.

My step tests will be done with the following:

-My elliptical

-Leslie Sansone dvds

-Straight marching in place

I'll work on this experiment over the next week or so, and will have those results. I'm really interested in the results from the elliptical. I can already say that it is fairly accurate on my shoe. It registered about .9 mile on my shoe. Not too bad. I'd rather it be low than be high. That way I can get more exercise in to fill the remaining mileage.

I highly recommend the FitBit One! They did have issues with the Force, but I still believe in their products. So don't be leery of them. And their customer service is wonderful.

My Walking Progress

(photo credit - www.visualphotos.com)

It’s hard for me to tell just how much progress I have made with my ability to walk. Once I sit down and think over the last several month, I realize I have made significant progress, in many areas of walking.

Walking with others. This is probably the most significant aspect lately. In an earlier post I talked about how I basically just other people’s ability to help me based on their body type and how strong I think they are (wow, I just read a bit of that post, and my mindset has changed drastically since then). That’s very bad on my part. I talked about how I needed to trust others more, and trust myself more. I have done that.

Since that post, I’ve had five other people help me walk somewhere. Five! That doesn’t count the chiropractor or assistant #1, let’s call her “D”. I’m now completely confident (more like 90% confident) with Dr. Van Loon. I am getting more and more confident with “D”. I have also had assistant #2 (let’s call her “Y”), help me a few times and am getting used to her. Plus, my niece “K” has been helping me around a bunch lately, and it’s getting easier.

About a week and a half ago, I went somewhere with my “K” and my in-laws. During the time we were out, both my mother in-law and my father in-law helped me. Those were probably the scariest times for me. My judgmental state of mind rearing its ugly head. My in-laws are older, and they both have bad knees and have a hard time walking themselves. I let that get the better part of me that day, so I was more hesitant and unsure of myself. But, it all worked out. I had a few bobbles with my mother in-law, but I stayed on my feet. I did take a Xanax that day, but it wore off while we were out (we were gone a long time). So the walking I did with my mother in-law was without anything in me. Good thing was I didn’t have a panic attack. My heart was racing, but I was able to control everything else.

Think that covers everyone who has helped me so far. And there will be more people in the future who will help me also. The thought of that actually makes me anxious, but it will happen. I need to get used to it. Side note, I went to the doctor for an annual checkup and the doctor and I talked about my anxiety. She says that I need to not be afraid to ask for help. I’m not afraid really to ask for help, but I don’t like to ask for help either. I like to do things on my own if I am able. She said people are more than willing to help others, some actually want to help because it gives them a good feeling. I understand that, and I’m trying to get that in my head. If I need help, ask. I still feel sometimes that I’m putting pressure on people when I ask, or that it’s an annoyance to help me. Need to get that out of my head.

So, I have made quite a lot of progress. I have a ways to go to where I want to end up (totally able to walk unassisted like I did when I was a kid), and I think I can get there. I haven’t fallen yet when someone else has helped me. Came close a few times (once with “K” and once with my mother in-law). But not yet. It’s best not to think about that. I’m not putting a goal date for when I want to walk alone after all I have done that already, little bits at a time. It will happen when it happens.

The major thing I need to work on still is the fear, anxiety, and panic attacks. I did get my own Xanax prescription the other day too. I don’t plan to take it too often, only when I really think I’ll need it.

And that’s that. I’ll be working on all of this forever, so I will send in updates on my progress when ever I think I’ve made more progress. Practice make perfect (except with oral presentations, still going to avoid those like the plague. No amount of Xanax can help me with that, hehe). Walking with cerebral palsy is tough no matter how severe the case is. But, it's better to walk than not.

Mileage Monday

I think my FitBit Flex is going to keep me moving. I feel guilty when I log into my FitBit account and see my low step count for the day. Right now, I have a goal of 5,000 steps a day. I might set that a bit higher eventually. Five thousand steps isn’t a lot for the “normal” person, but with someone with cerebral palsy, that’s pretty good.

I exercised five days this past week, and my body feels. it. I took Saturday off, but we ended up walking around Costco for about an hour, and that in itself is exercise for me. Hard floors, lots of people, and a big store can fit the bill for a workout. I did a mile on the elliptical today, and my legs are now tired. I need to make sure I stand up and move around the rest of the day though or else they’ll lock up and be very stiff. Will be on the floor later to stretch it all out too. That helps.

I’ve got five pictures for the last week from the virtual walk site. I have about 4.7 miles to go to reach the town of Emmalena, KY in Knott county. I should easily be able to get there this week. Here are the pictures!

Mile 630.6 (watp for 1 mile)                                      631.6 (Elliptical for 1 mile)

                   

Mile 634.6 (watp for 3.1 miles)                                  Mile 635.6 (Elliptical for 1 mile)

                   

Mile 636.6 (Elliptical for 1 mile)



(photo credit - http://exercise.lbl.gov/index.html)

I’ll be doing a “first impressions” post on my FitBit Flex sometime this week. I’m still getting used to it and learning about it. But so far, I love it.

Keep moving!

Big Solution For My Fear And My Panic Attacks

Ok, so I know you’re all dying to know what this solution is. Here it is: Xanax. There you go. It’s an anti-anxiety medication, and take it from a big skeptic...it works. My mother in-law has a prescription for Xanax, and she’s offered me a pill here and there for years. Mostly when we fly back east. I’m not a huge fan of flying and I tend to get anxious. I’ve always turned her down though. Until January.

In January, my husband and I started to work on my balance and walking without any support at all. This is how I came to my realization that my balance was actually fine, and it was my fear getting in the way. So, one day, we were out in the living room. No one else was around, so it was a good day for it. I didn’t have to worry about doors opening and closing, people sneezing, or other noises that cause me to jump (darn that jump reflex).

I was anxious during my practice, and my body was so tense I could barely move. One thing that helps that is if I close my eyes. So I closed my eyes and kept doing what I was doing, which was walking with my husband behind me. Then he had me keep my eyes closed and he spun me in circles so I didn’t know what direction I was facing. I didn’t know where the couch or chairs were. No clue. Then he let go and had me stand there with my eyes close. I got a bit more anxious, but not horrible. Then, the whammy. He told me open my eyes. I opened them, and it was instant panic.

I was in the middle of the room, nothing around to grab onto, and my husband was several feet away (still close enough to catch me if I fell). My entire body froze and I lost it. My breathing got out of control, my heart started racing, and I felt like I was going to die. But, I didn’t fall. So, now, we had a big clue as to what we had to work on. Balance is fine, mental state is not. So we kept trying this, and it ended up the same way each time. As I was sitting in the chair trying to regain control, my in-laws came back from wherever they were. They knew something was up, because I was trying hard not to cry.

We told them what was going was going on, and my mother in-law offered me a Xanax. I finally relented and said ok. However, I did not take one that day. I waited a few days. I wanted to take one before we did this “balance practice” again. I took one, and waited for 25 minutes. Honestly, I did not think these pills were going to do a darn thing. So we worked on walking and balance again, and it worked. I still felt anxious, but nowhere near as bad as before. I also avoided a panic attack after I was spun around in circles with my eyes closed. I opened them, and was in the middle of the room again with nothing around me. I stayed somewhat calm and never lost it.

It didn’t hit me until the next day just how effective it was. The next day we did the same thing, only without a pill. Same as before, I was spun around with my eyes closed. Opened them, and instant panic. I was also a lot more tense in my legs than I was when I used the pill. I had no clue Xanax did as much as it did for me. It relaxed my muscles (nice bonus I wasn’t expecting), kept my mind calm, and let me work through what anxiety I did have. I’d have to say that it cut out about 85% of the anxiety. It was still there, don’t get me wrong, but it was manageable at least.

Since January, I think I’ve taken 5 pills. I do take one when I go to the chiropractor, not just to avoid panic, but to loosen everything up. It really surprised me how much it relaxed my body. I don’t know if that’s because of the medication itself, or the fact that my mind was calm. I don’t think Xanax is used primarily for relaxing muscles (it’s mostly for anxiety), but it does have that side benefit.

I don’t plan on taking it forever, although you never know. Xanax can be addictive, but only if you take it every day. That’s not my plan. I only plan to take it when I know for sure I’ll have to walk by myself or with the help of someone I’m not used to. Remember my incident with the chiropractor’s assistant? Since then, she’s helped me out a few times, and thanks to Xanax, I’ve been able to handle it. As a matter of fact at one appointment, she helped me out to the waiting room when I was done, and she actually let go and walked behind me. I didn’t freak out. I just kept walking calmly. I was a bit more unsteady, but I didn’t panic. That was a big woohoo moment.

When we get back from vacation, I’ll be talking with my doctor about getting my own prescription. I feel bad for using my mother in-law’s. She doesn’t need them very often either, which is good, but I do want my own.

I lasted 38 and a half years without taking any medication for my cerebral palsy. For the record, this technically isn’t for my cerebral palsy, but for my anxiety. So I guess my streak can continue. My mental issues finally got the better of me, hehe. I say, if it works, do it!

Ways I Am Dealing With My Fear Of Falling

I have bad balance. Yes, this is true. However, since January, I’ve come to the realization that my balance is actually quite good for someone with cerebral palsy. My main problem is my fear of falling. I’ve come to the conclusion that my balance has never declined since I was a kid. It was only my perception. My perception started to change sometime when I was a teenager, an early teenager at that. I can’t pinpoint the exact event that made my perception changed, and that drives me insane.

As a preteen/early teenager I can’t remember a traumatic fall or other traumatic event that would have kick started this fear. All I know is that one day I was fine to stand in one place not holding onto anything. Then the next day I either had to hold onto something, or I’d need to stay in motion, or I’d fall. No rhyme or reason for it that I can think of. The only traumatic event I can think of happened in my senior year of high school when I fell down the stairs one day at school right before the final bell. Luckily I didn’t break a bone or anything, but it did hurt. Come to think of it, that was probably the first time I started hesitating using the stairs. I used the elevator at school for a while after that fall (big mistake). I am a lot more cautious now when I use stairs. And I absolutely avoid escalators. That is a huge panic trigger for me. But it still doesn’t explain why I suddenly had to hold onto things at an earlier age.

Over the years, this fear has gotten worse. I didn’t even fear falling (other than stairs) until college I think, and even then I didn’t put it together as it being a fear. I thought it was more of a self confidence thing. I didn’t want people to stare or laugh at me. Which has always been true, I’ve never liked it when people (young or old) stare at me. I still don’t, but I try not to let it bug me too much. As it turns out, it was actually a fear of falling. I was falling more and more during my college years, and that led me to avoid things. I only went where I absolutely had to go and nowhere else.

For me, fear turns into panic if I don’t deal with it. I have panic attacks. I know what triggers them, and do my best to avoid those situations, but it’s tough. My panic attacks happen when I know I’ll be walking either on my own (which is very rare) or with someone helping me that I’m not used to. My panic attacks lead me to hyperventilate (breathe rapidly), my heart rate to skyrocket, my entire body to lock up so I can’t move, to start crying, and it leads me to sweat...a lot. I can’t separate any thoughts, they all jumble into one giant nose machine in my head. I can’t hear anything but noise.

I think it was February when I almost had a panic attack in public. Maybe it was January. Oh wow, it was back in December. Here’s the original post I wrote about it. Anyway, I was at the chiropractor’s office, and I was walking from one room to the next. The assistant was helping me, and she’s like five foot four at most. I feel like I can squash her if I fall. We were going slow with no problem. We get to where we need to be, and she lets go. Instant panic mode. Luckily there was a wall right beside me that I grabbed onto (as much as you can grab a wall). I told myself to not panic and to just breathe. I was only on my own for about 30 to 45 seconds, but it seemed like hours. My heart rate went through the roof, but at least I was able to control my breathing, and I didn’t start to cry. She came back and helped me to the chair (she let go to set up a chair), and I calmed down right away. No one knew what almost happened.

So, how do I combat these attacks? It’s not easy. Not easy at all. I have tell myself to stop. Physically stop what I am doing. Mentally stop what I am doing. Focus on counting to ten (or in most cases higher). Focus on controlling my breathing. Anything to help calm me down. The easiest thing is to sit down, but when there’s no place to sit, what do you do? Either keep going or drop to the floor on my knees.

Other than breathing and focusing, there is one solution that I have found. I don’t intend to use this solution forever, but for now it’s helping out big time. I will write about this in tomorrow’s entry as this post is getting long. One hint though. I’ve said before that if I ever found something that gave me the same feeling that alcohol gives me, (relaxed muscles and calm mind) without the brain fuzz, I’d take it. Well, I found it. And it’s helping.

I know, not nice to leave you hanging. That entry will be up tomorrow (Wednesday) morning. If you read my blogs by clicking the link on FaceBook, that might not be reliable Wednesday morning. For some reason, WordPress stopped automatically sending new post links when I publish an entry, so I do it myself. I’ll set it to upload at 5 in the morning, and try to remember to post the link before I leave. If I don’t get to it, just keep checking the blog. It’ll be there, I hope. Actually, I think I just fixed it. We'll find out at 6 AM Tuesday if it works or not.

Mileage Monday

Got behind again in my posting here. I've been reading Tina's blog, Living With Cerebral Palsy, and one of her more recent posts said it's good to get into the habit of blogging every day, even if it is boring. That's my problem. Many of my day to day activities are boring and not exciting to read about. I can complain all day about my bad balance, and fear of falling, but not a lot of people want to hear about it daily.

But, I think that's what I'll try to do anyway. I'll do my best not to whine and complain, but just  relate my experiences with cerebral palsy. Ups and downs are a way of life for me these days regarding walking and balance. Some are good, some are bad. I do my best to combat this nasty nasty NASTY fear of falling, but it gets the better of me a LOT. So I'll be talking about my fear and ways to combat that in upcoming posts.

For now though, I have gotten behind with my mileage posts. I recently upgraded to Windows 8 and have lost the ability to use a program called Windows Live Writer, so I'm actually writing this on the WordPress site itself. When I add pictures using the WP site, they're huge, so I'm going to limit my pictures to two at a time.

On the virtual walk site, I've passed through Honaker, VA and am about a mile and a half outside of Council, VA. I'm gaining more miles because I've started doing Leslie Sansone's dvds again. I've gone a total of 533 miles so far. Here's some pictures from the site.

Mile 525 (Elliptical for 1 mile)



 

(photo credit - Copyright 2006 Lawrence Berkeley Lab)

Mile 526 (Elliptical for 1 mile)



 

(photo credit - Copyright 2006 Lawrence Berkeley Lab)

Keep moving!

Mileage Monday

Hope everyone is having a great 2013 so far, and that you’re all making progress on your goals and resolutions. My goals are coming along. I am taking a short walker break at the moment, but will get back to it today most likely.

Why am I taking a break? I have a tendency to hold the walker with a death grip, and my upper back muscles, arm muscles, and neck are sore. I need to learn to relax and just go. That’s a fear of falling thing. If someone is behind me, I’m fine, but if not, I tense up. Good news is though I used my walker at the chiropractor’s office the other day, I had no problems. Will keep working on it.

Since I’ve been a bit sore, I’ve also not been on my elliptical for a whole week. Whoops. That will start today again also. Luckily, I still have a back log of virtual walk pictures to upload. So, without further jibber jabber, here ya go.

Mile 504.2 (Elliptical for .8 mile)                                Mile 505 (Elliptical for .7 mile)

                  

Mile 506 (Elliptical for 1 mile)                                    Mile 507 (Elliptical for 1 mile)

                  

Mile 508 (Elliptical for 1 mile)                                   Mile 508.4 (Elliptical for .5 mile)

                  

 

(photo credit - Copyright 2006 Lawrence Berkeley Lab)

Keep moving!

Trust Issues

This weekend just flew by. Not a whole lot going on. Had my back adjusted again yesterday, and I feel all shiny and new again. It wasn’t nearly as bad as the first time, but things were definitely out of whack again. Things shifted too. I had knots on the right side of my back instead of the left. Basically everything that was out of whack on the left side last time was out of whack on the right side this time.

He actually said I had a rib out of place. I asked “Wouldn’t I have felt that? Wouldn’t that hurt?”. He said it sometimes happens when you sneeze or cough harshly, or when you shift around while you sleep. It doesn’t always hurt when it happens. My guess is it happened in the middle of the night. I tend to jerk around a lot. I’ll wake up thinking I’m falling out of bed, and then freak out. I roll over roughly a lot too which is a good time to things to shift.

Anyway, things are good, and I plan to go back in another three to four weeks to keep it that way. I was feeling some pain again when I went in, but it's better now.

There was a bit of awkwardness, but only on my part, since I’m paranoid. Not paranoid…I don’t know what the right word is. Untrusting is more like it. I don't think anyone is out to get me ore anything, but I tend to ward off other people helping me. When we go out, I hold onto my husband’s arm. I’m used to it, and it’s what I prefer. When someone else helps me in that way, I panic. It’s my own mind playing tricks on me, and I need to get used to other people helping me like that.

Anyway, my husband had an appointment (with the same dr.) at the same time I did, so he helped me to the first room (with a roller table that I could be on all day if I was allowed. It’s a table with some sort of roller that massages up and down your back, and it feels sooooo good.). When my timer dinged, the doctor came in, and he helped me to the second room. Normally I feel strange when another person helps, but this wasn’t too bad. I was a little unstable, but still fine.

Got my back adjusted, and had the “stim” (tens unit) on for about five minutes. When my timer dinged this time, the assistant came in to help me. Now she’s a super nice lady, but she’s also tiny. She’s about 5 foot 4 maybe, and very small. I felt like I could crush her with my pinky. She helped me out to the other room, but I was very slow, unsteady, and unsure of myself. Then she let go! Luckily we were beside a wall, so I held on there for dear life. She didn’t know, she was just setting up the chair for me to sit in. I don’t think I gave anything away, but I had myself a nice little anxiety attack.

Made it to the chair and all was fine again. Got the heat treatment for 5 minutes, and then I was done. Thankfully the doctor helped me out to the waiting room where I waited for my husband to finish.

All this tells me I need to relax, have other people help me more often, and to trust that they know what they're doing. What’s the worst that can happen? I fall and have to get my back fixed again. Oh darn. I have to trust people more I guess. I have a certain attitude when it comes to people helping me. I’m not sexist in the least, but I do feel more comfortable when men help me. I just think they’re stronger, and would be able to help me up if I did fall.

So, things I need to work on:

1. Trust others to help me.

2. Trust myself to show myself what I am capable of.

3. Trust my own body to do what it needs to do in a falling situation.

4. Practice (again) walking with my walker.

I believe if I practice with my walker, my confidence will go up in these situations. Because it’s only a matter of time when someone other than my husband will help me out again. I need to be prepared for it.

Well, where did all that come from? This was going to be a mile Monday post, but look at that. I had myself a mind dump of sorts.

Found the Solution

I believe I have found a solution to a lot of my problems. Obviously cerebral palsy cannot be cured, however, the problems that go along with them can be somewhat fixed. How? Well, for me, it’s going to the chiropractor. My appointment was on Thursday, but I wanted to wait a few days just be sure. I believe the “jerk move” problem is now gone. Whatever is left over is just some confidence issues, and I’m working on that.

I’ll describe it this way. Have you ever been watching television for a while, and when you turn it off, you think to yourself “wow, that was really loud.”? You don’t realize the TV was too loud until it’s not on any more. That was how my back was. I didn’t realize how uncomfortable I had been for a very long time. I just figured it was normal to be that achy and uncomfortable with cerebral palsy. I ached doing every little thing (even putting my hair into a pony tail was painful). I just didn’t really realize it until I saw the chiropractor.

                      

Let me just say, my back was a wreck. I always knew my neck was a mess, but my lower back was tilted and cock-eyed also. The doctor said I had some scoliosis, but it wasn’t anything to be worried about. I was also very tight and had a lot of muscle knots. Now I didn’t see myself, but my husband was in the room with me. While I was face down on the table, my right hip was a lot higher off the table than my left. As soon as he did a few pops, I was even. I immediately felt my lower back relax, and it felt good.

The middle of my back is fine, but it was out of alignment also. Few pops there, and it was straight. My shoulders and neck were the culprits of most of my discomfort. He adjusted my upper back while I was still face down on the table, and again it felt great. I think that was when he really got an idea of how tight I was up through the shoulders. He gave my husband a look of surprise apparently because I was so tight. Turned over on my back and that’s when the magic happened.

My neck is curved to my left and because of that, I get shooting aches (not really painful) down my arms every now and then. I get the same thing down my legs because of my lower back issue. Due to my cerebral palsy, it’s difficult for me to relax. Muscles and tendons were tight, and the doctor did a great job of loosening it all up. Then, kerpop! My neck got adjusted, and I just melted. All I good do was squeak out a “thank you” and then relaxed. He did the other side, and got another loud kerpop. My husband heard that one from where he was sitting. It was loud.

He also put “stims” on my upper back. It’s basically a tens unit and had me lay back down for a few minutes to let that do some work. Felt like a lot of needles massaging my shoulders and neck. After that, he brought me out for an ultra sonic treatment, which is basically heat therapy. That felt really good too.

And then it was over. He said to come in whenever I felt I needed to. Which is good. The chiropractor we saw near Seattle always told me to come in a certain amount of days in a week (at least in the beginning). So, my plan is to go once a month. In Seattle I think I went about once every three weeks. I may have to go back in sooner, at least in the beginning, but my goal is to get in there once a month. And whenever we go on vacation I’ll go in a few days before we leave.

I’m now able to sit up straight without any pain in my lower back. I can put my hair up with no pain in my neck and shoulders. I can bend over without groaning. I can stand up from the couch without groaning. I have to keep telling myself to stand up straight. That doesn’t hurt any more. I was constantly bent at the waist when I was standing.

So yes, big improvements. I do feel a bit achy in my upper back and shoulders, but heat should help that. I’m going to try to make it another week, and then go in I think. The chiropractor I saw was very nice. He is helpful and knows what he’s doing. He doesn’t try to up-sell you at all which I appreciate.

I keep laughing at myself throughout the day when I can do things that normally cause me discomfort. I can now sit cross legged without my left hip aching. My left hip has been giving me problems for a while now, and it’s fixed. It might not be for everyone, whether you have cerebral palsy or not, but for me the chiropractor is a huge deal. Yeah!

If you happen to live in the Coachella Valley (Palm Springs, Palm Desert, Rancho Mirage, Indio areas) and you have a back issue, check out The Spine and Sport Clinic. I saw Dr. Patrick Van Loon. I highly recommend it and him.

The Return of the “Jerk Move”

What is this “jerk move”? I sort of tried to explain it back in February, which was the last time it happened. It’s hard to explain. It feels like the hinges on my legs need oiling. They won’t swing fluidly. When that happens, my body jerks (my legs bend suddenly) and then I can go again for a little bit. I feel very unsteady and unstable. I have no control over when it happens. I actually “sat down forcefully” (i.e. fell) on the couch and on the toilet a few times in the last several days. Took me by surprise. I said to myself “OK, I guess I’ll sit now”.

I’m treating myself to a chiropractor appointment tomorrow afternoon. My husband has been having back issues lately, and he's found a really good chiropractor. So, I’m going to see if that makes a difference. I love chiropractors. I used to see one every 2 or 3 weeks when we lived in Washington State. It actually helped quite a bit back then, so we’ll see what happens tomorrow.

Is this jerk move hip related, neck related (my neck is curved funky, and is always out of whack), or is it related to the colder weather? I’m actually thinking it’s related to the colder weather. Every time these strings of days happens, it’s during the colder months. Last time it happened, it was in February. I also had it happen in Monterey during our trip in late March. It was fairly cold in Monterey when we were there.

I know of a lot of people with cerebral palsy that have more problems when it’s cold. They have a harder time getting around, are a lot more stiff, and have more frequent falls. I was lucky to have grown up in Miami, where it’s almost always warm. We did have days though where it was cold, and when I look back, I do remember having a harder time on those days. I’d fall more during school, especially if I needed to go outside. My high school had separate buildings for each subject. My senior year had me going up and down the stairs after every class (well, I think I had two on the same floor in a row). Up for one class, down and in the other building the next, and so on. So during the cooler months, I had to go outside. I do remember falling more often my senior year. Even fell down the stairs that year (I kicked my own foot and fell, that wasn’t due to being cold).

Right now I’ve stolen my husband’s hoodie and am keeping warm for now. I plan on getting on the elliptical later today. I have no goal in mind for that, just to keep moving. I did half a mile on Monday because I felt unsteady. I wasn’t going to fall off of it (I don’t even think it’s possible for me to fall off of it), but I didn’t feel comfortable at all.

These are the days I take them one at a time and just do what I can. I try not to beat myself up in the process.

Stay warm and keep moving!

Found An Active Blogger

I always get excited when I find an active blogger who writes about cerebral palsy. I just happened to stumble upon Tina's blog Living with Cerebral Palsy: Living and Working with Cerebral Palsy. She has spastic cerebral palsy, so it's not exactly the same as mine. I did however relate to quite a few things in this particular post: Unforgiving. I just skimmed the first page of her blog site, and she is actively writing. I subscribed to her blog just now through the email subscription option. Woohoo! I love finding new people with cerebral palsy to learn what they deal with and how they deal with it.

A Date To Add To My Calendar

Yes, I am alive. I'm going to be getting on the blog wagon again very soon. This is just a quick post to mention a date that I'll be adding to my calendar from now on.

I became aware of this a few days ago, thanks to Charisse, an 18-year old girl with CP. I guess from now on, the first Tuesday in September is World Cerebral Palsy Day. You can read all about the day here. Really great thing in my opinion, and I want to thank Charisse for posting about it on her FaceBook page.
I highly suggest you check Charisse out on either her Facebook page or on her YouTube channel. She is one awesome girl!
I am coming back, but for now, Keep Moving!

I Want One!!!

About two or three years ago this thought went through my mind. “I wish I could take my elliptical outside. I wonder if they can make an elliptical that moves outside.” My husband’s sarcastic response was “They do. It’s called a bicycle.” Hahaha.

Fast forward to about six months ago. My father in-law mentioned he saw something about an elliptical type bike on the news. I don’t know why I didn’t look into it back then. Maybe I just forgot about it. Then this morning, I was reading a blog post over at The Daily Spark. My wish has been answered. There is an elliptical bike. The ElliptiGO. Here’s he blog post I read this morning on it. Giveaway: ElliptiGO Elliptical Bicycle.

I checked it out on YouTube this afternoon because after I submitted my name for the giveaway, I had doubts. What if it’s like a normal bicycle? I am unable to ride a normal bicycle because of my cerebral palsy. The balance is just not there. Even as a little kid when my balance was better than it is now, I didn’t have the coordination to keep it upright. This is the video that I saw.

[youtube http://www.youtube.com/watch?v=0FBO1AK5iOY]

Looks like my doubts have merit. I highly doubt I’d be able to keep it upright. Even if I could keep it upright while using it, stopping would be an issue. I’d fall over more than likely. So, a big bummer.

They need to work on a tricycle type of EllliptiGO now. If they ever make a trike version, I’ll be all over it. Well maybe once the price comes down a bit.

My initial reaction when reading the blog was “I want one!!”

Blast From The Past (after the fact)

Here’s an interesting little fact. Taking a video of yourself while dealing with anxiety helps to get rid of anxiety. So, yes, I have anxiety issues. You’re all well aware of that fact now. It pops up at random times, and I was getting frustrated that it was popping up as I get on the elliptical. I’m fine when I get on and once I get going, but it hits me as I’m getting situated. Ok, I get on the elliptical by holding onto the side rails. Then I move my hand to the pulse bar thingamajig. Then I push the button for the fan with my left thumb and put my left hand on the arm pole. No problem.

Problem starts happening when I move my right hand from the pulse bar to the arm pole. Why? No idea. I kind of do this funky “hesitate and jerk move” as I put my right hand on the bar. Once my hand is on the bar, I’m good to go. All sorts of anxiety shows up and it’s frustrating. So, I decided to take video of myself one day with my iPod (I’ll spare you the video) to show myself what happens.

Nothing happens. It feels like I’m going to fall, but there’s nothing there that’s pulling me, pushing me, or making me off balance. Nothing at all. So, by watching the video, it’s helped me gain more confidence. I still hesitate and do the “jerk move”, but the anxiety is going away. It’s not nearly as bad as it was. And, I do not, absolutely do not let the anxiety stop me from exercising. I want to stop when I have those moments of panic, sure, but I still do it.

Now, where does the “blast from the past” from the blog title fit it. I remembered that a long long long time ago, when I was in physical therapy as a little kid, my therapist had my mom take pictures of me as I did my exercises. I’m not sure why he had her do it. I think it was to demonstrate how certain exercises were done, so my parents could replicate them at home. But that thought popped into my head the other day. I remember the photo album those pictures were in also. Embarrassing, but they were taken for a purpose. Just like the video I took. Embarrassing, but it was taken for a reason.

And than reason proved to work. I’ll have to remind myself to take another video if I have more issues. I don’t like watching myself in a full body video (my avoidance of my cerebral palsy), but it must happen for things to get straightened out.

So if you’re having any sort of problem, physical, mental, or whatever, record yourself as it’s happening, so you can tell what exactly is going on, and how you can correct whatever it is that needs to be corrected.

Doing well today. My workout for the day was the full 5 miles of my Leslie Sansone DVD. Legs are tired, but in a good way. She’s got a 21 day challenge going on, and I’m going to see how I do. It started yesterday, so I missed that start. Yesterday we were supposed to walk 3 miles. Today was a 2 mile walk. So, I figured I’d catch up by doing 5 miles today. Tomorrow is supposed to be a 4 mile walk. We’ll see how my legs are, but I plan on doing 3 miles of the DVD and then the last mile on the elliptical. You can record your mileage on her FaceBook page.

Keep movin’!

Falling Sensation Explanation

In yesterday’s post, I mentioned a falling sensation that I talked about in my SparkPeople blog that I posted on Wednesday. I feel that needs a bit of an explanation on this blog. The falling sensation is my attempt at explaining what these series of bad balance days are like. My balance is awful regardless of what day it is, but maybe two or three time a year I experience a week or so of really bad balance.

The best way I can describe it is if you’ve ever had a dream where you fall. You have that sensation of falling and then you wake up startled. I have that same feeling sometimes when I’m awake. Not all the time, just sometimes. I searched for it online, and I found a few articles about it (I can’t find them now of course) and it’s not too rare I don’t think, but it’s not too common either. There’s not much to be done about it though from what I remember. You just have to go through it until is passes.

Today’s exercising sort of helped, but that feeling is still there at times. Not as much, but it’s not gone yet. I just need to push through it, and it will eventually go away. It always does. It’s just annoying when it happens. Doesn’t help the old confidence either. In the past, once it does go away, I still hesitate on certain things, because I’m expecting it to happen.

That’s the best I can do to explain things. Maybe it’s vertigo or labyrinthitis (a friend of mine who also has cerebral palsy has labyrinthitis). That could be exactly it. Because no matter what, every time I go to the dentist and they lean the chair back, I feel like I’m going to fall out! I‘ve had that feeling since I was a kid.

Makes ya think.