Sundog –noun 1. parhelion. 2. a small or incomplete rainbow.

Posts tagged “post exertional malaise

Life as a CSU Student

The last few weeks have been very intense. I’ve been attending CSU for two weeks and prior to that were many student orientation activities designed to make us feel more a part of the college. It’s been a lot of fun, but also an incredible amount of stress returning full time to classes.

Calculus was a bit of a surprise and I found myself quickly swamped. My instructor is a graduate student and this is his first time teaching. He’s nice and tries hard, but that doesn’t really take the place of experience. When comparing the learning experience of myself to that of Blue Jess who’s taking calculus at the community college, I feel she’s getting a much deeper teaching of the subject. It’s taking a lot of extra study time for me to make up for what isn’t being taught in class, but I’m getting there and feel as though I’m doing well.

Speaking of being taught in class – I found it rather odd that in every one of my classes, the first two times we met were mostly fluff. Nothing was being taught, it was all about the syllabus and how to be a student. I understand these are typically freshmen level courses, but as an experienced student ready to learn it was a little frustrating. Especially as the homework kept coming in, but no instruction was given on how to handle the problems.

Chemistry was my favorite class. The instructor was humorous and had a dynamic teaching style. Unfortunately, by not coming to it fresh from Intro to Chemistry, the homework load was enormous. A few days ago I decided to drop chemistry for this semester and try it again closer to when I’ll be needing it.

Intro to Astronomy has been ok enough so far, I think it will start picking up soon though. We have been covering the ancient Greeks and Romans and their contributions to modern astronomy.

I’ve had to pick up a one credit odd course since dropping chemistry in order to keep my financial aid, therefor I shall also be taking a class in West African contexts and perspectives. It begins in late October and will hopefully be very interesting as I hear the instructor is pretty great.

It’s been a bit of a frustrating thing to drop chemistry. I don’t like feeling as though I could have done more, done better. Truth is, there is an enormous amount of stuff going on right now in my personal life and this heavily contributed to my choice in dropping chemistry. There is only so much of me to go around and still actually feel like I’m not neglecting something important. Still… while the reasons are sound, I can’t help but wonder if I could have done chemistry had my personal life been less chaotic right now.

I have had a good time meeting some new people last week in various clubs. I’ve even volunteered to be a student council representative for SHPE – “Society of Hispanic Professional Engineers” and pronounced as “ship.” I’m curious as to where my involvement with them will go as they are a friendly group of people and I can see being with the club the next several years of my education.

Last April I began going to a CrossFit gym to do a dramatic boost to my fitness level. I’ve been pretty consistently going three times a week ever since. I love working out there, such an amazing group of people. My hope at the time had been to see my endurance raised enough to handle a full day of school and homework when I began at CSU. At one point last week, I was climbing 4 flights of stairs with a heavy backpack on my back full of textbooks and easily keeping up with everyone else. The thought struck me around the third floor that this was exactly why I’d been working out so hard all summer – I’d achieved my goal.

Even though I had to drop chemistry and feel a bit of failure in doing so, the reality is that I have achieved so much more that its time to focus on all the success. I have moved here, applied and been accepted into CSU, received residency so I could afford to attend, gotten my math skills up to the level they needed to be so I could succeed at calculus this fall, gotten my physicality up to the point where being bedbound only three years ago seems like it happened in a different lifetime, and am healthier physically, mentally, and emotionally than I have ever been before in my life.

That is a heck of a lot of success to culminate in these last few weeks. No wonder I feel so tired, it’s been a very long road to get here and now I see that this road has only just begun. Life is an adventure and I’m incredibly happy to be on this one, even when I’m feeling tired and drained by the road I’ve been walking to get here.

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Metamorphosis

I feel as though life is currently lived in a haze of passing moments. It is difficult at times to capture what is going on around me as I’m still trying to adjust to their speed. Living in the woods for nearly 10 years was a different world than the one I life in now.

I rose when the sun was up and the animals made enough racket to wake me. Life followed the seasons and weather, Each winter I rested while dreaming of warmer days. I would initially welcome spring bringing new life back into the forest around me, then curse it for the alder tree pollens that nearly crippled me with allergies each year. Summer would come as a blaze of warmth and sunshine, drowsy hours spent resting in the sun and locking away the memory to be cherished next snow storm. The autumn would bring a welcome crispness to the air and spur me to finish all my winter preparations.

Life was much simpler as each season had its own pace and little to hurry me before the next season began to make itself known.

Over the years I would often dream of once again living indoors. Things would be easier, I would feeling safer – being warm. One thing I always forgot to add into the details was the flow life takes when you have places to be and things to do.

I feel as though time stood still while I lived in a tent, events moving around me to change the world I live in, but ultimately not touching me. I saw a war, a new president, our economy plummet, avian flu bugs, cellphone use explode to a way of life, gas prices sky rocket, the internet become a culture – all of this and more as though looking on through a one way mirror.

Now life feels considerably different. Trying to reintegrate with a world that has flown by me, it can be … tricky. Things others take for granted after years of living in the American culture of the 21st century, I am coming into having read about it, but not personally experiencing it. It’s like reading a guidebook before you get to your destination – things are familiar, but you still have to learn your way around.

While the last 10 years of illness are hazy in my memory (its surprising how quickly the tent is fading away), the previous healthy years of life as a college student and bookstore clerk are surprisingly clear and sharp. This has caused an odd juxtaposition of lives to needing to be merge: The one knows how to live in a fast paced world, but approached it as a healthy and vigorous 24 year old; verses the one who knows how to live with chronic illness and in sync with the seasons of life.

Trying to merge these two dynamic halves into a whole has been both invigorating and stressful.

Last summer I awoke in a new world and a new place, considerably changed from when I fell asleep 10 years ago. As I move through my new surroundings, I am letting fall behind the shackles that bound me, and stepping forth into the rainbow of possibility before me to discover who I have become.


Rainbows are Like Ninjas

This is what February 13th looks like from Hawaii at Waihe’e Beach, Maui. (pronounced why-hay-A)

We walked around the bend seen in this picture, then set our picnic down in our usual place. I turned around and was surprised to see this wonderful rainbow stretching the sky behind me.

The weather cleared to almost full sun, mid-70’s, and the water was warm enough for a long soak after a brief shock of cold when first diving in.

Waihe’e is one of our favorite beaches here so far. It’s a reasonable drive and usually quiet. Today it was just the two of us and a whale we saw breach the surface out past the reefs. The wave break you see in the photo (where all the white topped waves are) stretches a very long ways and provides a protected area for swimming, floating, and snorkeling year round.

So far at Waihe’e we’ve now seen many various aquatic life, a sea turtle, a monk seal, and the humpback whale.

A long, meditative rest followed by a good soak in the ocean left me feeling recharged and somewhat centered for the first time in weeks.

Waihe'e 2-13-2012 011 - BLOG

The new year has been one of great healing for me, but this is a painful healing of old emotional wounds, both from before I was ill and after, that have their thorns in daily life. It has left me drained and on the edge of slipping back into the crash of November/December. Though it is frustrating to have had only a week or so in early January where I felt as though the crash was finally lifting, it is hard to find fault when the culprit is healing.

Healing is not always easy or happy making, but as long as one is willing to embrace it, then with time you will find a rainbow has sneaked up behind you to brighten your day.


Tired.

Over the last few months it has become harder to avoid using the term “crash” as an explanation for the trend our health has been taking. Those of you who read this and have CFS, or other similar illnesses, are likely familiar with the life meaning of such a simple word and the hushed tones used to speak of it.

For us, it is the hidden monster lurking in the dark closet waiting for the light to go out after an exhausting day. Creeping up soundlessly, you wake to find only a shadow of yourself remains.

dec 2011 blog 1

In my experience, the main problem with a crash is there’s no shortcut to ending it. You can’t go to the doctor, get a new pill, and voila – you’re back to the same energy levels you had weeks or months before.

No, instead the cure is most often one of rest and pacing yourself, a gradual culling of all the nonessential aspects in life. Often essential comes down to the true basics of life – food, sleep, and keeping some sort of roof over your head whether it be house, tent, or car.

A social life is nonexistent, a tidy apartment falls down on the list of things to do, laundry piles up and you find yourself putting on the same shirt you wore the last three days in a row for lack of something clean to wear. Meals become more simplistic and you’re just happy to have something hot even if you’ve eaten much the same all this week… and last week too.

After months of avoiding the dreaded word, I have found myself quietly testing the sound of it and hearing the the sad ring of truth it brings. I’m usually much quicker to speak of a crash, much more willing to put life back on the shelf for a few months and heal.

But not this time.

No, this time I find myself fighting against the whole idea of a crash. Refusing to even think of it. Unwilling to bow down and let it strip me of all I have been working towards.

Which only makes things worse.

The energy required to fight against it should be going instead to healing from it. As much as I have blocked the possibility of a crash from my thoughts, there is no more getting around the simple facts.

I landed in Maui, had a great couple of months where life almost looked normal again, but all this also came with a monumental amount of change and stress. For the most part we are now settled in; very little needs to be done outside what is becoming a familiar routine.

Life has a chance to slow down again. It is time to rest.

Meanwhile… what a place for a rest!

Baby Beach - December 5, 2011
(photo from December 5, 2011 at Baby Beach)


Ex nihilo

From the outside, my life would seem very simple. I do not work, there is no place I must be more than a couple times a year, my income is steady, and my needs predictable. Yet in this simplicity there is a large void that comes from not feeling as though I have accomplished much in any given day.

When life itself is a daily accomplishment, there is little satisfaction in it because tomorrow it will be as though today hardly was; in that the exact same things will need doing again. Little carries over because I do not have very much to show for all my spent energy in any given day. It is so frustrating to have such a small amount of energy to give life because I still remember the feeling of having completed something after a hard day’s work.

The simply joy in having worked till I felt as though I was going to drop, then looking around me to see the world was transformed by what I had done. My house would be clean from top to bottom, everything at work fully caught up and running smoothly, or my feet carrying me miles into the backcountry with nothing but a heavy pack on my back and a dog by my side. All of these things I took for granted when I had them, never seeing how precious this sense of having done something ordinary could actually be extraordinary in the size of feat accomplished.

Twenty minutes of cleaning up is now infinitely harder, equal only to the most taxing days before. My great trips to the backcountry are a walk to the end of my driveway and back. I never have the feeling of being caught up in my work or it running smoothly, as I now lack the capacity to do more than those things which are vital or time sensitive. Everything else must wait until they fall into one of those two categories, otherwise I will crash from over exhaustion and be unable to complete even the little I do now.

I really miss that feeling of accomplishment that was so easy to come by when I had more energy. It is very difficult even after these last eight years of CFS to accept that being able to wash one plate is a worthy goal. Paying one bill online actually is a day’s work well done.

Now managing to pace myself, to conserve energy every day so my body has some with which to bring about healing and a means to wellness, is the greatest accomplishment I can do and it involves me doing absolutely nothing.

Whoever originally said “Nothing comes from nothing” obviously never had Chronic Fatigue Syndrome.


Life with MCS

Home is a tent right now. A medium sized tent, sitting in a patch of woods in the Pacific Northwest. Alders, maples, cedars, and other various trees shelter us from the world outside. A world that has now become too toxic for us to live directly in any longer.

Growing up I had seen my mom diagnosed with Multiple Chemical Sensitivities (MCS). I had seen that it meant she could not be around perfume, fresh paint, or insecticides – but almost everything else was still fine. This is what MCS meant to me, a mostly normal existence with something akin to allergies to a few really stinky things.

By some twist of fate, I now understand that for some of us with this condition its meaning becomes dramatically different. The word ‘sensitivity’ doesn’t even come close to describing the reaction my body can undergo when exposed to various chemicals that are commonplace throughout our modern society. The normal pathways the body uses to remove the chemicals we are assaulted with on a daily basis, these are clogged and sluggish for me resulting in an overload of things even in the tiniest amount.

I have no idea how many of us with extreme levels of illness from chemicals are out there. Most of us tend to stay at home in environments specially tailored to ease as many symptoms as possible. We rarely go shopping and usually only a few stores are tolerable to be in for any length of time. You won’t see us at the movies, bookstores, or any event that has a gathering of people. Were you to see us, other than a few odd things easily dismissed, you wouldn’t know how ill we were at that very moment because most of us have learned how to play the role of ‘normal’ very well.

If you saw me at your local co-op, you would see a woman in sun faded clothing, who has a bit of a lost and tired expression on her face, heavily flushed cheeks, and glassy eyes. That is it. That is all that would stand me out from anyone else at the store, and all but the intensely flushed cheeks and facial expression would be semi-normal for this alternative minded town.

Meanwhile inside me is a different story. My head is in a thick fog, hence the lost expression while wandering the aisles. The flushed cheeks are intensely hot, even painful, and seem to be tied to my body trying to induce a fever to burn off the invading toxins, as it would do with a virus. It is likely I have a headache, am dizzy and would have a hard time standing in one spot long which also leads to more wandering around the store. The entirety of my body becomes numb to normal sensations. Not numb like a limb that has ‘fallen asleep’ but numb as though so over stimulated it simply stops processing new data. I have often been amazed at the miracle that my feet keep walking, that I can actually speak, hold objects, or even remain upright because none of that seems possible when you can no longer clearly feel your body. Other various symptoms will occur as well, but are not as consistent as these.

This will all continue for several hours after I have returned to my safe environment away from further influence of civilization. The following days will see me with all of these symptoms to lessening degrees and a great deal of pain along every nerve in my body, but a completely new symptom also becomes fairly dominant. It is from the CFS and called post exertional malaise (PEM). My muscles are beyond fatigued from the simple act of briefly shopping for vegetables the day before. Weak as a kitten, ridiculously easy to become tired from even sitting up for more than a few minutes, it lasts from a day to several weeks depending on many factors – most of which are beyond my control.

Every trip out negatively impacts my life for days or even weeks, therefore I go out into the world only on very rare occasions, and typically only for medical reasons. I am not alone in this, it is a condition surprisingly many of us share to varying degrees. Yet rarely would you ever know the person standing next to you, swaying a little on their feet, might be having strong reactions to the very same air you are breathing safely.

Since moving to a tent in January 2002, I have visited two people’s homes that did not leave me feeling the way I have described here – all other homes have caused similar or even much more severe reactions. It is for this reason we decided to try and build a home safe from common building materials which are mind numbingly toxic. It is this type of home we dream of living in one day. A home where we can feel safe, warm, and most importantly – a home that does not make us continually ill on a daily basis.