Throwing a Fit

As every person with health problems does from time to time, I’ve come to the point of throwing a fit. I think this is a natural process that allows you to not be negative all the time. You just suppress your frustration, move forward to the best of your ability with a good attitude, until something sets you off, and you release it all in one long session of pouting, kicking, screaming, etc.

This morning I tried to do some yoga, and I can’t lower down from a pushup position. I can’t do a push up either. I had just worked myself up to 50 pushups for the second time. It takes me 2 or 3 months to get there and then something goes wrong. Yes, of course I am thankful that I’m healthy enough to do it at all, but I’m 30 years old, not 70. My body breaking in a new and creative way every time I try to do something is really wearing me down.

The problem seems to be my back and shoulders. Both of my shoulders hurt, but the right one is so bad I can’t put any pressure on it in a pushup position. I feel like this is somehow related to the bigger POTS picture. For months on end, I suffered from involuntary muscle tightness and muscle contractions. My arms would plaster themselves to my sides, and my shoulders would raise. It would sometimes go on until I started shaking so hard, I looked like I was having a seizure. It could be a magnesium deficiency or a mysterious POTS symptom (or both.)

Whatever caused it, starting to heal my back is making me feel sick. I’m spending time everyday lying on a baseball at the point of one of the knots, trying to work on them a bit each day. It gives me headaches and makes me nauseous. Now I’m walking around feeling fatigued all over again. Not as bad as before of course. But I’m back to feeling sick all of time, in addition to lot of shoulder pain.

My mood seems to cycle. Every time I get a little bit better, I get really excited, but then try to power through to full health. I want to breathe that big sigh of relief that the whole thing is finally over. Then I get to my boxing class, and can’t do a pushup, and have to lay on the floor because my body and breath stopped coordinating with each other. I run into a new wall; this time my knotted back. I know my back has been messed up for a while, but it all locked up so tight that I got used to it and didn’t feel it anymore. Starting to undo all the damage makes you realize just how damaged you are. For intents and purposes, this is as bad as mild to moderate back injury.

Of course I’m happy to be on the path to good health. It takes everyone who is sick a while to find the path, and many with chronic illness haven’t found it yet. For some, it simply doesn’t exist. There comes  point however, where you want to stop comparing your wellness with where you were, or where other chronically ill people are. You want to be a part of the rest of the world, and hold your body to the standard of a fully functioning, healthy person. I don’t want to console myself by being thankful that I’m not stuck in bed. I don’t want to count among my blessings the fact that I’m able to drive and walk for more than a few minutes without a walker. Not yet anyway. When I’m fully recovered, I will be thankful for them all. For now however, I’m tired of this chronic illness guilt. I’m currently refusing to submit to the idea that I once had it so bad, (and others still do), that I should be thankful for being in the state I’m in. I remember health, and I want it back.

I think that no matter how sick you are, you’re likely to experience something similar. You go from not being able to leave your house, to being able to go out with a walker or a wheel chair. You’re so thrilled and grateful not to be isolated and shut in to the extent that you were. And then it wears off. You’re frustrated to be so ill that you’re unable to get around for very long, and then you’re also hit with the guilt that you’re no longer grateful. You think “I could still be stuck in bed, but I’m complaining about being fatigued while I’m out with friends.”

Well that does it. I’m declaring official fit throwing week. Well all have the right to wish for perfect health, no matter how bad things have been in the past, and no matter how bad they are for anyone else.  To all my chronic illness buddies out there, take a little time now and again to freak out, and know you’re not a shallow or ungrateful person for wanting your health.

 

Soaking It Up

I had no intention of writing about my briefly mentioned, new romantic interest, but my last post generated a few requests (or should I say ‘demands’? hehe.) Upon thinking about it, I suppose he is relevant to both my health and my martial arts.

At the end of every tai chi or kung fu class, my Sifu requires that all of the girls have a male walk them to their cars, because we train in an unpleasant part of town. One evening the guy walking me asked me about my health (which he had probably figured was an issue because I have to lay down in the middle of class all the time.) He said he thought he might be able to help. Curious, I let him explain. He had interest in some sort of alternative medicine substance that comes from the ocean. Honestly, he sounded a little nuts to me, and I was then concerned that had allowed some sort of crazy into my life. We met up to talk about his water healing theories, and I explained that I was not interested in putting effort into something that far of the map of proven medicine.

After that he sent me an email inviting me to be on a mailing list for social events he organizes for him and his friends. We ended up going dancing, and had plans for another group dancing event. This lead him to send an email asking about what he should do if I get POTSy while we’re out dancing. I gave him the full run down about my blood sugar, fluids, heat, and finding a place to lay down.

The second dancing event involved a group dinner at his house before we went out. This required me to explain my food allergies, which he excitedly worked around, and made an amazing tempeh stir fry.

The idea of romantic endeavors while overcoming a chronic illness is somewhat stressful. On one had, I was worried about being too complicated for someone to want to deal with. On the other hand, you have to watch out for those weird guys who like drama, and taking care of a girl with problems. But at this point, the guy seemed to have most of the information he needed to be around me comfortably, with no heavy involvement. After the second dance night we went on a date.

I was skeptical for a while, but finally, he won me over on a weekend road trip with a group of people I only sort of new. We were in a seafood restaurant, and I had a 5 minute conversation with the guy taking my order about how I wanted a fish taco, but with no tortilla, because of the wheat. After the exhausting conversation, I got a plate of fish breaded in wheat. I tried to take it back and they were rude and dismissive, which caused me to grumpily sit and eat the cabbage out of the taco for dinner, resigned to being hungry. My boy got up and ordered a half-pound of smoked salmon and shared it with the whole table, as to not single me out. At that point I realized that someone was really looking out for me.

So far, it’s just for fun, but it’s tons of fun. I guess fun and healing might be more accurate. He enthusiastically cooks and finds restaurants to work with my diet. He enthusiastically works on the knots in my back that seem to be the next big obstacle in my recovery. He’s interested and easy to talk to. He notices when I’m not feeling well, but is good and not fussing over it if I say I’m fine. Plus he works out with the same martial arts instructor as me. He’s in the Tai Chi class, and I’m in Kung Fu. This means we can practice together and teach each other things.

It took a special guy to be persistant without being pushy, in order to make me realize that I really don’ t have to be separated from everyone around me due to being sick. He’s one of the few people that I had seen around Tai Chi before I got sick, so in a way I feel like he took on the role of welcoming me back into my life, and reminding me that I still fit into it even if it has changed.

I’m not sure where this is all going, but for now, I’m soaking up all of the help and support that I’ve been needing since I got back.

 

Miles and Davis

Yesterday, I have my first acupuncture session I think I’ve had this year. In response to my complaints about intense shoulder pains, my acupuncturist looked at my back and said that he could actually see one of the knots in my back, without touching me. He thinks this could be related to a magnesium deficiency. The pain in my shoulders has gotten so bad that I can’t do a pushup anymore with out massive amounts of pain. It’s exhausting to get a little bit better, and then run into another obstacle. It looks like a year of involuntary tension and muscle spasms have built up into physical masses on my back.

My new romantic interest (*giggle) had taken an interest in working out some of the knots last week. He also told me that there was a visible mass on the right side, and a matching one on the left side that can be felt but not seen (like a normal freaking knot in the back.) He seems to have personified them and intends to do battle. He has even named them. The first knot felt like a “Miles”, and the second, likely by free association became known as “Davis”. It’s nice having someone go into battle on my behalf. I’ll be trying to get regular sessions with the acupuncturist, supplemented by a weekly beating of Miles and Davis.

I have added flax, chia, and hemp seeds to my diet, along with cocoa nibs. These are all foods very high in magnesium. Magnesium deficiency is difficult to test for, and can cause excessively tight muscles, involuntary muscle contractions and spams, and well as many POTS related symptoms. There is no way to confirm that this is the problem, but increasing magnesium in the diet rarely causes problems, and if there is a deficiency, it should help greatly.

For now, I am able to continue going to boxing, and working at a slow relaxed pace. My instructor comes by and tells me that by staying slow, calm and relaxed, that I am doing what he asked. Most of the time he doesn’t want us amped up and going full speed and power. The fact that my body forces me to stay calm is helping for now, but will hold me back later, if I don’t get this straightened out.

I am now allowed to stay for the class after boxing and work with my Sifu for an extra hour and a half, for a total of 3 hours workout, if I chose. I can’t handle it right now, but when I work my way up to it, it would mean that I get focused instruction from 2 different, highly skilled instructors in the same long work out. It’s the best incentive ever to keep on this.

I’m preparing mentally for it to take 6 months or so to get my back into working condition again. Hopefully it goes faster than that. I want to be training full speed ahead by 2014.

Mixing It Up

One of my goals for fitness and Kung Fu is to reach 100 consecutive pushups. I once reached 62 push ups of somewhat questionable form, and my Sifu told me to back off as to not trigger a relapse of my health problems. Once we agreed that it was time for me to start pushing again, I plateaued at 50. Lately, I have been experiencing some muscle weakness. At times I can do as few as 20 push ups. It’s very frustrating to work hard, and then have uncontrollable factors interfere with your progress.

Lately a friend of mine has been trying to convince me that weight lifting will help. I’ve decided that this is a good idea, because a) I keep hitting a plateau, and b) when I’m lacking in endurance sometimes I can still do strength training. I started with legs yesterday. I’m so sore I can hardly move. It’s great. I’m starting to realize that I can always be moving forward. When one exercise is going poorly, I can likely switch to another. Sometimes my endurance is poor, but I can lift weights. Sometimes it’s hard to stand still, but I can jog. I’ve also read that cardio vascular exercise increases blood volume (low blood volume is often a characteristic of people with my condition). I’m not a fan of running, but it looks like I need to start. Maybe when my endurance returns, I will see some gains from my cross training, and get some extra pushups. I’m still improving my overall health, and still feeling hopeful that in a year or 2, I’ll be a perfectly healthy person.

Healing Through Boxing

As I’ve mentioned before, I often times tell myself a story about my illness when I get frustrated with my limitations. The story is that my body is hypersensitive to tension and inefficient movement, and that this will help me as a martial artist. The more awareness you have of your mistakes, the easier it is to correct them. In my case, rather than disciplining myself to focus on my technique, my body is assaulted by a number of exhausting symptoms as a result of my errors. My job is to focus on moving in a way that doesn’t tire me out and force me to stop exercising immediately. Up until this week, the story was just a story. I was attempting tai chi, and not improving. My symptoms were firing, and I could not pin point the cause. I became overwhelmed, frustrated and depressed about my situation.

Recently my Sifu switched me to Kung Fu, where I’ve been working with one of his assistant instructors (Frank). Last Saturday was my second session with Frank, and finally the story feels real. Frank teaches boxing, and he has a very specific way he teaches. He wants you to move slowly. Very slowly. As you start to move, he watches carefully. “Don’t tighten your jaw,” he’ll say. You try again relaxing your jaw. “Don’t move your arm. Move your lower body, and your arm will just flow out on it’s own.” You try again. “Exhale when you punch, inhale when drop back into your stance.” Moving slowly and thinking about tiny details like jaw tension can be very difficult to focus on. But right now, for me, it’s fascinating. As I relax my jaw, I feel some of the panic and confusion in my breath begin to calm. As I drop my breath from my chest, down into my belly, I feel my vision start to sharpen, and my dizziness subside. I feel calm, strong and peaceful. Then my shoulders get tired, and tense up. My breath becomes uncoordinated, I get dizzy, and my muscles start twitching. Yes! My body is learning. It can use slow, meditative boxing techniques to learn how to breath and move again.

I believe that I am having these problems because I am still suffering from autonomic dysfunction. My Sifu could not wrap his head around the idea that subtle mistakes in my tai chi movements were causing me to become so ill that I needed to lay down on the floor. This is because a normal persons body is strong enough to adjust and compensate for minor errors, in a way that mine cannot. The body is mysterious and poorly understood. I don’t know if I can strengthen the autonomic nervous system, or if it can possibly return to normal on its own. I am wondering if it is possible to learn better breath and movement to a degree where I simply don’t upset the system anymore. That may be just as good. In some ways it could be better.

I don’t know what will happen. For the time being I am feeling quite happy to have a new avenue to explore health improvements. I couldn’t be happier that the opportunity happens to exists with a boxing instructor.

Back to Kung Fu!

After I sent my Sifu an email explaining that tai chi was making me sick, he told me to come to class this evening and discuss it. I tried to explain to him that repeated arm movements during warm ups were causing problems. He asked why the form wasn’t making me sick, if the warm ups were just movements taken out of the form. I actually don’t have a great answer for this, but I think it’s because I start to tighten up my chest after my arms get tired, and it feels like this confuses my breath and possibly my circulation, and everything goes down hill from there.

I’m starting to realize that it’s not just a trait of doctors to tell you that your symptoms don’t make sense. I tried to tell him that I feel like if I was more efficient with my arm movement, I could handle the exercise. His response was that there was no way that the tai chi exercise was causing the problem, and that what I was saying didn’t make any sense. Once again, I’d like to say that I don’t have the ability to modify my symptoms and triggers so that they make sense. All I can do is report what makes me sick and what doesn’t.

Never the less, I sniffled and whined for a while, and in the end, he decided that I could try Kung Fu again, if I thought that would be easier. There is an older guy, Frank, who was a professional boxer back in his day, who often teaches the Kung Fu section. I am now fully convinced that tightening certain muscles in my chest and shoulders are triggering symptoms. Frank puts a lot of emphasis on slowing down and relaxing the arms and chest. I could feel my muscles move fluidly in a coordinated fashion with my breath, and then a single tensed muscle would set all the other muscles to firing causing twitching, confused breath, and total lack of coordination. But…I felt like my body might take the opportunity to relearn how to coordinate.

Once my upper body started locking up significantly, my Sifu came over and instructed me to do some kicking. Again, things went well until I started getting tired and a little sloppy, and allowed tension to travel through my chest. I feel like if I can break this habit, my health will improve to the next level. Perhaps I can even return to tai chi at some point, and be able to train 4 days per week instead of 2.

I’m calling today a win. I’m grateful to have wonderful teachers. I’m excited to see if Frank can help me to get my arms and breath working correctly again. And I’m thankful to my Sifu, who told me I wasn’t making any sense, but then trusted me to try to tell him what I think is going to work best for me. He said he’ll keep an eye on the training that I choose for myself during Kung Fu, and then he’ll decide what I’m going to do next.

Today, I think I can pretty much say that I’ve made it all the way back to what I was fighting for. My heart is happy and my spirits high. As always, I remain skeptical an nervous about my progress, and wonder what will come next.

Time for a Change

Today during tai chi, I was feeling somewhat normal (click here, if you’re just joining me), which is rare, so I decided to start putting some power into my movements. Of course it made me sick, and I had to sit down during the work out, and then get up and start again. Finally my instructor came over and showed me a very slow version of the exercise and told me to quit putting power behind my movements. Eventually we switched to a different exercise that I can better tolerate, and I was able to follow along. By this time I was so upset, I was choking back tears. When I first came to Sifu, I wanted to learn how to kick box. Now my body is forcing me to practice tai chi as though I were weak and elderly. I’m neither of those things. I’m just sick and I need help working around it.

I get frustrated because my Sifu will occasionally tell stories about a student who was sick with some illness or another, and how they got better from practicing tai chi. I’m not better. I feel left behind, and like if my body doesn’t do what people want it to do, they don’t want to deal with me any more. I don’t know that this is true. But it’s hard to show up, not even doing what I have a passion for anymore, and hear about how great tai chi is for healing, then feel like it’s simply accepted that I’m broken and have to move that way now. In all fairness, I did email him a while back to tell him that the quick movements were upsetting my body, and I was going to attempt to only do things that didn’t make me sick. But it really didn’t help. Moving my arms seems to make me sick.

Either way, I don’t like what I’m doing, and I’m not learning anything because I spend the entire class trying to control my breath and my arms, neither of which seems to want to do anything sensible. I’m doing it wrong, and it’s making things worse.

I sent my Sifu an email after class and told him I was unhappy with my training and want to try something different. I suggested kung fu, where I can focus on kicking since I’m having a hard time controlling my arm movements. I feel very upset, but I also realize that getting fed up and freaking out can be a good thing. It brings with it the possibility of more heart ache and disillusionment, but it also come with the possibility that I can move a step closer to the passion that drives me to heal. Only time will tell.

Help a Lymie become a Success Story

This is a post for a fundraiser to send a good friend to get the lyme treatment she needs. Who is she, and why should you care? Read her blog, fall in love with her strength, and wit, and if you feel inclined and able to donate please do. Otherwise, read and support. She appreciates every dollar and every kind word. 

Cold Showers?

Recently I’ve had an intuition. It’s along the lines that my body is sluggish, and asleep in a way that if I could just find a way to startle the hell out of it (bungie jumping, jump in the freezing cold ocean, etc), that it might reboot and wake the hell up.

One of those late google nights got me reading about cold showers as a form of therapy. It seems many elite athletes have started taking ice baths, or more extreme, entering a specially designed freezing cold air chamber (cryotherapy) for about 3 minutes. The theory is that this reduces delayed muscles soreness when tends to creep up on you a few days after exercise.

You’ll find in this post, that I don’t explain exactly what I hope to gain or think is going to happen. This is because it appears that “science” is not on board with this idea yet. Instead you’ll find stories written by individuals with chronic illness about how a cryotherapy chamber has helped them. You’ll find stories of various cultures who incorporated ice baths into their lives due to their belief in it’s healing properties. And then you’ll find a few studies that show a beneficial increase in some helpful chemical or another, or decrease a harmful one.

Long story short, I read a few lines about vasoconstriction, preventing the pooling of blood after exercise, and reducing exercise intolerance, and I decided to give this strange fad a try. Sometimes after exercise, a busy day, or lots of walking, I’ll pass out for a few hours a wake up feeling drugged. This seems like a decent shot to me.

So far, I’ve been able to tolerate a lukewarm shower followed by a few seconds of unbearable cold. My usual routine would involve baths so hot they would burn my skin. I have a hard time keeping warm, and I love hot baths. I also read that if you’re always cold and have cold hands and feet, the cold water thing is worth a try. Since switching from crazy hot water to way-too-damn-cold-for-me water, I have noticed that my eyes and hands feel less puffy and swollen when I wake up in the morning. Not bad for an immediate result, when I’m half assing the treatment. (You do want to work your way down to colder temperatures gradually, if you don’t tolerate it well.) I’m hoping to get myself down to nothing but cold water for a few minutes, to see if it produces any useful effects.

Normally when I come across a crazy fad, I like to talk it over with my best friend, who is the most skeptical man in the world. Usually the situation is that I got frustrated and started googling, and was briefly caught up in some scheme or another, which he quickly pulls me out of. This however strongly matches my intuition, and so far my intuition has not only not steered me wrong, but also lead me to find my blood sugar issues as well my food allergy. I’ll let you know if anything interesting happens as the temperature drops.

Inside Out

Occasionally I’ll write a blog post to document a strange perception or sensation of my illness. This is one of those posts. These days, about 95% of the problems I have, are during my martial arts classes. I took last week of of tai chi, and as usual feel quite a bit better for having done so. Today when I returned, I realized specifically that I have a hard time with repetitive motions of the arms (yeah, like punching and stuff).

Today I was overcome by the strange sensation that my body was confusing the inside and outside of my structure. It felt like my heart and my breath were trying to coordinate with my arms instead of each other, and my body as a whole. As I changed pace and moved limbs in different directions, my breath began to freak out, unable to determine which arm or leg to coordinate with. This sent confused numbness and dizziness up into my head until I had to crouch down on the ground because I was becoming less and less coordinated with every movement, and kind of felt like I was standing on a ship.

Perhaps this is why my body prefers yoga to martial arts. In yoga each movement gets its own breath, and the entire body moves together in a fluid  and generally symmetrical motion.

If this sensation continues, perhaps I can ask my Sifu to help me work more explicitly on retraining my breath to coordinate. My heart seems to be doing a great job, and only starts to get out of hand if I let an unhealthy situation go on too long. This is very reassuring, as I have some voluntary control over my breath. Although occasionally it decides that it’s going to do its own thing, which appears to have no connection to what the rest of my body is doing (like when it starts using my jogging pace and rhythm when I’m trying to chop vegetables). Never the less, it’s an interesting observation, and I hope it’s the next piece of the puzzle in getting me back to 100%. I leave my martial arts classes a little depressed these days.  I could use another breakthrough.