My "CFS Story"
(ronald hill)
I think people may find the last part interesting.
My symptoms are standard CFS stuff: Fatigue, sore throat,
general weakness, cognitive function problems (attention span
difficulties, etc), sleep problems, headaches, eye problems, etc, etc.
I've been sick to some extent most of my life, particularly the last
ten years or so. Unlike the supposed standard for CFS patients, I
can't really remember a specific day that I became ill. When I was
younger I was always described as "sickly", and I specifically remember
difficulty concentrating during reading, for instance, though I don't
know if I had the same physical reactions I do now during reading.
Some factors that may have contributed to early illness are genetics, a
leg operation when I was two (for a dis-located hip that I still have),
and a really bad diet.
I really get the sense of my illness coming on after I took
anti-biotics for pimples for several months in the early eighties. The
pimples went away, but certainly much of the general "crummy feeling"
and other symptoms started around this time, whereas things like the
lack of concentration got worse. I started getting the flu or colds
constantly.
Since I didn't really have a sudden onslaught of symptoms, I
generally would rationalize away my physical problems and blame myself
for my cognitive problems. Around 1986 I went on a vacation and tried
to go swimming and got the dizziness, etc. It was then that it hit me
that there really was something "not normal" about my physical body.
In the past I had mentioned in passing some of my symptoms to a
doctor or two while I was in for different reasons, and basically got
the brush-off. So my first reaction was to instead to try something
different, so I went to a Nutritional Therapist, who started me on
masses of vitamins and an anti-candida diet.
Candida is a yeast normally in the body which, according to
some, reproduces too rapidly and starts to cause problems in the body.
This happens under certain circumstances, including when people have
long term treatments of anti-biotics (like I did).
Within weeks after starting the treatment, I began to feel much
better! Some things, like the constant colds and flu, went away and
have never returned (I only get colds or the flu once a year or so).
I had difficulty keeping on to the diet, and the vitamins were
taking about 1/4 of my income at the time, but I felt it was worth it.
Unfortunately, after about a year or so, he tried something on me (I
believe it a Homeopathic remedy called CANDEX). The idea was that this
would directly kill of the candida by building up the bodies immune
system. In any case, it made me very sick at first and also made me
very feel very emotionally frantic. I believe that it directly
contributed to me falling asleep at the wheel while I was in the
mountains and driving my car off a cliff!
All of this resulted in me wanting a more "quick fix", so I
went to an Environmental Medicine doctor, who started me on Nystatin (a
common anti-candida drug) with mixed results. He also got me on
allergy shots, which confirmed that I had allergies, but I don't know
if they really helped me that much.
His main course of therapy was a kind of "sauna therapy". The
idea is that people like us have a lot of chemical toxins in our
bodies, so he would put you on certain vitamins and then into the sauna
(under controlled conditions) for a couple of hours a day. I don't
know if it ultimately helped me, but I did seem to "sweat out" a lot of
chemicals - my mouth had a very metallic taste in it (I had braces for
ten years and later found I had heavy silver mercury poisoning), also I
re-lived the same "drugged out" feeling from a medical procedure I had
had years before.
From there I went too somebody who dealt with "body energies"
and the like. She did a kind of muscle-testing to how you reacted to
certain stimuli (food, drugs, etc). Eventually, though I got so week
that she said she really couldn't help me anymore because she need
there to be more strength in the arm to do the test. She sent me to a
chiropractor. The chiropractor seemed to help somewhat with my legs,
but less so with my other problems.
While I was seeing her, I went to get my silver mercury
fillings removed. The person I went to see was someone who specialized
in replacing these types of fillings. He had a device for seeing how
badly they were leeching, and he said I was among the worst that he
seen (while he was gone I looked through his records and my numbers
were indeed far worse then the other charts I looked at). After having
them removed I did indeed feel lighter and some symptoms decreased or
went away. However, I also began to experience muscle spasms around
this time. They weren't particularly painful (unless I tried to resist
them), but they did throw me around the bed at night. I presumed this
was me de-toxifying the mercury, and I had heard that Homeopathy was
good for this.
So I started going to a Homeopathic doctor, who I went to for a
year. I went to see him for about a year, during which my symptoms
went up and down. Everything he gave me seemed to have some effect,
good or bad, but nothing seemed to "stick". After about a year, I
started to notice that some of my symptoms, like the difficulty
sleeping and muscle spasms went away, and most of my other symptoms,
including the general fatigue and the cognitive functions, were _much_
better. Most importantly, they've stayed this way till the present
day. I still have my constant ups and downs, but the downs are no
where near as bad as they have been in the past. I don't know which
"remedy" or "remedy" helped, but the effect has kind of "locked in".
I've kind of been afraid to go back to see him for fear that whatever
he did next might send me back to where I was.
I've also going to a physical therapy called Feldenkrais, which
is described in the popular book RELAXERSIZE. The idea behind this
therapy is to re-train the body and the mind to work together in the
way that we move. The sessions are very gentle,the therapist simply
moves different parts of the body, and it takes no effort on the part
of the patient.
Interestingly, when I had my first treatments I would get the
same symptoms that I get when I try to read too much, or think too much
- dizziness, headache, blurry eyes, "brain-fog", etc. Even though this
wasn't very pleasant, I took it as evidence that the therapy was indeed
doing something. It was as if the brain was indeed "learning" from the
movements and the brain was reacting to this "overdose" of learning.
Another aspect of it that was interesting was just how _good_
it makes me feel, not mainly from a structural level, but from a
"nerve" level. What I mean by this is that many of us with CFS have a
feeling that our nerves are inflamed or irritated. For whatever
reason, the therapy seems to have a kind of "cooling" effect on this
symptom, which feels really good, because a part of you that is usually
feels quite bad ends up feeling quite good! I don't know how to
describe the effect, but it is definitely different then the effect
achieved by relaxation or massage.
One of the lessons involves retraining your body to be able to
breath more naturally. The immediate effect of this was that my voice
became much deeper! In addition, I generally have that feeling of
being able to take a "good, deep breath", that before I didn't have. I
don't know this has directly helped with supply more oxygen to my body
and brain, but it has certainly helped my sense of general well being.
I was born with a dis-located hip and often walk with a limp.
The limp often seems to be effected most by how much the "achy feeling"
that comes with CFS is "acting up" that day. Also, CFS people
generally have difficultly with their equilibrium. The therapy seems
to directly helped the limp itself, the CFS itself, as well as the
equilibrium.
I am also generally standing up straighter and have more of a
sense of my body simply "working better".
I've also seemed to have had luck with changing my diet more
towards eating raw vegetables and vegetable juices from my home juicer.
Diet changes seem to be the only change that seems to help EVERYONE,
to a certain extent.
One of the symptoms that people complain about is sensitivity
to sunlight. I've had this for about the last ten years. When I
changed my diet and started juicing, I also determined to gradually
start getting more sunlight. First I would just walk a little more in
the light, then I started sitting out in the sun and reading for a half
an hour at a time, then I started going swimming in a pool. Within a
few months I was at the point where I could stay out in the sun past
the point of getting sunburn, and still not have any "CFS" reactions to
it. I don't know to what extent it was the diet and to what extent it
was simply doing it gradually, but I suspect it was both. Also at this
time, I began feeling a bit more emotionally "open.
I generally look at sunlight as being a "nutrient" that people
need and think that our in-ability to be in the sun is certainly
something to try to overcome.
In August of 1992, became interested in a type of emotional
therapy called Voice Dialogue. The idea behind this therapy is that we
are all made of subpersonalities, some examples of which would be the
critic, the pusher, the inner child, etc. In the therapy one sits in
room with a group of chairs and when you move into a specific chair
that represents that subpersonality and the therapist talks directly to
it to find what role it plays in your life. I found this idea to be
fascinating and since I already knew the therapist (she is one of the
people I did the feldenkrais work with) I thought I'd give it a try.
AFter talking for a while, she said, "I'd like to talk to the
part of you thats sick". So I moved to another chair and immediately
went totally limp. My eyes were closed and It felt like all the other
parts of me aside from my illness (or some part of it) were "turned
off", and I became kind of a dis-embodied nervous system (for want of a
better word!). It wasn't painful or anything, but it was very
interesting. I felt this energy which seemed to be the kind of
"scrambled brain" that we all have. I didn't feel that this part of me
had any particular "personality" or anything, but was simply the part
of me that ill.
Afterwards I was thinking that it was all very fascinating and
all that, but of little "practical" value. However, as soon as I left
to walk to the bus, I felt incredibly different. I felt far more
outgoing and aware of my surroundings then I have ever been, in effect,
my "outgoing" sub-personality came out, and my life not been the same
since. I have always been introverted to some extent, but my illness
made me all the more so. In the past, the sicker I felt on a given
day, the more introverted I was, and the healthier I felt, the more
extraverted I was. It now feel like this link has been broken somehow,
IE I can be feeling bad and still feeling extroverted.
In the sessions since then, I have made other changes almost as
significant. To some extent I'm rediscovering that, despite my
illness, I have a emotional life, much of which is separate from the
illness. My illness itself hasn't changed (I have all the same physical
symptoms), but it's effect on my emotional life (and thus, my life) has
been reduced greatly.
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rh...@netrun.cts.com (ronald hill)
NetRunner's Paradise BBS, San Diego CA