|
My Story
Yes this is a LONG page, but you can look for the Yellow
Word-Specific Subjects
and just read those, or read it all as you wish. :)
My Background-the Early
Years
When I was growing up in the 1950's the
medical world had no names, indeed no knowledge, for many of the syndromes
that have come to light in the last 10 to 20 years. There was no
such thing as Fibromyalgia, Dyslexia, and
Chronic Fatigue Syndrome. I'm not even sure that irritable bowel
syndrome was commonly understood.
When I was young, I had trouble with digestion, both
constipation or diarrhea, with reactions to milk. I caught every childhood
disease that was common to those times and even one that was according to
my "Grandma Dr." not so common. I was thin and frail and never seem
to have any energy for things like running around the playground.
Another of my earliest memories was of the teachers telling entire class
rooms of children to run around the perimeter of the playground at least
one time or more every day. I found myself out of breath and
agonizing after only going three quarters of the length of one side! I was
of course treated as though I was lazy, with no one trying to understand
what was really happening to me. As a child that young I didn't even know
how to express my distress to an adult. In the classroom I had
difficulty reading and especially difficulty with math, and yet I was a
bright child-so again I was treated as though I was just not making an
effort. I do remember receiving an IQ test in grammar school and
actually scoring quite high on it which exacerbated the problem with my
teachers. Very early on I began to hate school because of my
intestinal distress, catching all the illnesses, and being unable to play
like all the other kids, as well as all the criticism that I received for
my low grades.
My memory is very hazy of my childhood because of all the stress but I do
remember finding out early in life that if anyone poked me with a finger
on my arm or my leg, even gently, it hurt! I would react as though I
was seriously jabbed to which adults would criticize me in some manner.
I felt very isolated and confused most of my childhood. I had no way of
knowing that I was experiencing the beginnings of IBS, CFS, and
Fibromyalgia!
I now realize that my doctor grandma was not as well schooled as
physicians should have been even in that era, plus she was dealing with a
child that had odd symptoms both inside and out! Then again keep in mind
that this same woman wanted to cut one of my legs off and take an inch of
bone out and put the leg back on so that my spine would not be twisted
with scoliosis! (I have lived all my life with one hipbone an inch
higher than the other and a spine that was at the beginning twisted into a
C curve.) She often questioned why my skin was so bumpy and/or red at
times and she probably thought in diagnosing even
SCARLATINA that my racing heart had something to do with a symptom when it
was more like I was terrified of the woman! After telling both my mother
and I that I was going to die of leukemia and to keep me out of school for
year so that I would not catch any colds or flu and die sooner than I
would anyway-she decided that I was simply severely anemic and started a
weekly regime of Gamma globulin
and iron injections with the needles that were the size used for horses in
those days! :(
In looking up how to spell Gamma globulin for
my story I found this quote: "Gamma globulin
has been used as a form of therapy since 1952. It has proved effective in
the treatment of various autoimmune disorders...". (the article said it
has been used for Chronic Fatigue Syndrome too).
At any rate, with all of these health issues and resulting emotional
problems my relationships with my mother, father and teachers were very
difficult. In retrospect I can see that they were just as confused
and troubled as I was, and did not know how to act or react to me.
I would like to note here that while exercise is always encouraged by the
medical community to "help" FM pain and muscle problems, there is a very
fine line between overdoing it and finding the right level and type of
exercise to keep your body as fit as possible. In my late 20s I was
as physically healthy as I could be during a period of several years when
I owned my beloved horses.
Caution: large group of photos takes a while to load-
http://www.lynescreations.com/20.htm
Every day I would be doing heavy physical activity like hauling a bale of
hay, lifting a heavy Western saddle, controlling 1000 pound horse etc. I
felt strong and healthy but every once in awhile "out of the blue" a
muscle in my back would suddenly spasm and "lock up" to the extent that it
would put me flat on my back in bed for three days until that muscle would
let go. There was never any specific thing that I did to cause this
and before I understood the effect that FM has on one's muscles, I was
always mystified and tortured by this "malady". At these times
I
would have to have a friend take care of my horses while I was in bed
waiting for the muscle to let go.
I do treasure this period of years in my life which
were the happiest and healthiest time for me. Toward the end of the time
that I had my horses my lung condition was beginning to show up and I
became allergic to hay and straw. At this time my first marriage was
coming to an end and I had to give up my horses anyway. I suppose it
all worked out for the best as the FM and the lung condition (a type of
asthma: see lung condition further down) began to show up as well as
increasing troubles with my spine and muscles while riding horseback.
I know now that FM affects both the "hard muscles" (the muscles in your
back, neck, legs, etc.) and the "soft muscles" (the muscles of your large
and small intestines-the IBS part). During my early 30s I went to a
physical therapist for my back and after three months of the most gentle
and varied therapy to try to loosen and relax my back muscles, my therapist was
completely bewildered. She said to me "I have never met a person with
a back as hard as cement, whose muscles would not relax no matter what
type of therapy was applied". She and I both gave up at that point
and it was very disheartening because again it was before anyone knew of
this thing called Fibromyalgia.
Dyslexia/Brain Fogs
I do remember my mother getting me into a special reading course in junior
high school to try to help me with my reading recognition. I was a
voracious book reader as a child and teenager despite the fact that I had
to read most of the sentences twice and three times over to make sure that
I was getting the correct meaning of words. I also remember my
mother "tying a red ribbon around my right wrist" to try to help me
remember which was my left and which was my right! It didn't help at
all and I'm sure it drove her crazy because she could not understand why I
couldn't get it, but my brain just wouldn't go in the right directions! I
think the way that I learned to cope at least a little bit was to start
looking at words and numbers in a spatial way... a sort of artistic way.
When I saw three numbers I would think quickly in my head: this number is
at the beginning, this number is in the middle, and this number is at the
end. Of course with longer strings of numbers I found that quite
difficult! I always had a terrible time with math and I think
goodness for calculators these days!
I also realize I have great chunks of my childhood missing and it was not
till later in life I realized that STRESS can cause my brain/thoughts to
just "freeze up" or go blank...
My Later Years
Menopause, FM and CFS
When I hit the age of menopause early I did a lot of research when many
different doctors and nurses could not answer questions about a lot of my
odd reactions and symptoms and often just said "oh you're just getting
old". What I discovered at that time was that women have hormones
circulating in every part of their body helping to control the functions
of everything including and especially the intestinal track! Over an
agonizingly long period of "pre-menopause symptoms"
I discovered how the diminishing hormones caused a huge upsurge in the
symptoms of FM, IBS and CFS! I cannot help but think that each affects the
other and that after having several doctors tell me that I would have
menopause symptoms (hot flashes and insomnia) for the rest of my life that
hormones DO pay a major
part in these Silent Syndromes! I have not looked to see if there
are any studies to back that up but it continues to be my experience to
this day. It was during my research on menopause symptoms that I came
across Fibromyalgia and its symptoms and finally a woman doctor that I was
seeing talked to me about having FM and we agreed that I did.
Unfortunately it is still being researched and the fact that one of the
hallmarks of this syndrome is that it affects everyone differently is
terribly confusing for the medical community and many patients are
misdiagnosed, treated with criticism and are told that they are simply a
hypochondriac.
The latest studies that I've read on FM seemed to
indicate that it is caused by the bunch of nerve endings at the top of the
spine/base of the skull sending and receiving a erroneous signals,
especially with regards to pain, but as all as FM and CFS sufferers know
there's a lot more to these syndromes than just the pain part! FYI,
I have not actually been diagnosed with CFS but intermittent chronic
fatigue is such a part of my life that I just assume that I have that as
well... Sometimes I think all these syndromes can be pretty well lumped
together because there's so much crossover in the symptoms. My friends
with Rheumatoid Arthritis can identify with many of my symptoms as well,
and I understand that often FM patients first seek out doctors that
specialize in arthritis!
I remember the first doctor who considered that I had FM tapped me
just above my knee and asked if that hurt. It didn't, and that was
just the first of the awful reality that FM symptoms are very very
individual! I told the doctor that if she were to poke me in the
side of my thigh, or the side of my upper arm it would hurt. I told her of
my odd reaction to medications. I told her of the terrible muscle spasms
in my back that I would get off and on all my life, for which I was taking
Valium when it hit and using ice on the affected part... and this was just
the beginning of learning about this syndrome. Unfortunately most
books on FM list any and everything that anyone could feel going wrong in
their body and blame it on FM.
FM, Menopause and SUGAR,
and Sugar Substitutes
I have learned from personal experience that some
sugar substitutes can cause an FM flair...and that sugar also causes HOT
FLASHES in menopause, so it's good to be aware as you use or try plain
sugar of one of the multitude of substitutes, if you suddenly get
symptoms! I have come to only try one new food or sugar substitute at a
time, for a few days and see what happens. For me, a lot of Equal will
cause an FM flair, BUT that other sugar substitutes will cause hot flashes
like they are "real" sugar. I do not have any diabetes but I have learned
to really limit my sugar intake.
IBS - an intestinal disorder...what it is, some diet
suggestions I have found, and more:
As I have related, I have had trouble with IBS my entire life without
knowing what was. In fact when I was at one time in my 20s eating
"an apple a day to keep the doctor away" and I would collapse on the floor
in excruciating stomach pains, convinced that I was going to die of some
strange malady (remember that Grandma Dr. Lady!) it was a very frightening
time. It wasn't until my second husband took me to a specialist
after an IBS attack put me in the emergency room that this doctor told me
"you do not have anything more serious than IBS, so if it hurts don't eat
it!" He also gave me an antihistamine type medication that had the
side effect of keeping the intestinal tract quiet when eating foods like
salads etc. I was able to take that medication for about 10 years and at
that point my body chemistry rebelled and I got the exact opposite
reaction when I took that medication so I had to quit. At the time I began
to curtail more and more of the kinds of foods I could eat without getting
a bad reaction. I learned what foods would make me go to the
bathroom and what foods
would make me stop to put it bluntly. I lived on that one cup
coffee in the morning to go and I allowed a particular kind of coconut
cake every day to keep me just a little constipated. It wasn't until
menopause hit that my way of dealing with IBS was destroyed. I then
began to eat even less types of food. And I want to say here now
that any doctor who says eat fiber to help your IBS can just go......! At
this time in my life when even water soluble fiber can create havoc in my
intestines the only thing I can do, once again is curtail the types of
food that I take in. But keep in mind this is a very individual syndrome
and each person has to find what works for them. Charting what you eat and
what happens for a while can help sort out what is causing the more
serious reactions.
Right now my diet consists of scrambled eggs cooked quickly in boiling
water, bread with barely a gram of fiber and no preservatives, tofu (which
really helps if the used carefully, for hot flashes because it is a
plant-estrogen) tenderized white chicken breast meat, some no fiber
noodles made in Taiwan, lactose free Fat free milk, (no more than two mug size cups
a day because there's a lot of sugar in it) margarine, occasional fat-free
cheddar cheese singles melted on toast, and water to drink. I can
drink water either cold or hot (when I drink it hot I put the tiniest bit
of Equal in it and pretend it's tea) Its winter and very cold as I write
this. I treat myself to a very good kind of bottled water since that is
the only thing that I drink and I do have to be careful as water is
something that sets off IBS. The reason for this is that water normally
goes straight through the body without stopping for absorption in the
small intestine. it's actually not easy to stay hydrated by only drinking
water and I have studied sport drinks and other kinds of water trying to
find something to fool my body into thinking that the water is a food-like
a juice so that it will absorb better but I have not found anything
acceptable. Most if not all drinks have citric acid and other juices that
set off IBS for me.
I can have a little bit of Aunt Jemima light syrup which I will mix with a
little margarine on that bread for a desert or even put on tofu to give it
a flavor. I can't have any fruits or vegetables in any form, or any
other kind of meat, or anything with citric acid in it (which is why I
can't drink any sort of juice drinks anymore) and of course no caffeine or
candy. Yes it is very boring and very repetitive but the incredible
pain of spasming intestines, diarrhea and/or constipation is not worth
eating anything differently. It's different for everybody and each
person has to find out what their body does well with are not. The
best thing I can do for myself is try not to get depressed about my diet
and I admit that that is very difficult.
How I deal with FM, etc. now....
I have been unable to take hormone replacement therapy, which I'm sure is
a side effect of FM. FM causes the infamous "backward and odd
reaction" to medications of all sorts. I had tried every
single kind of a hormone replacement there is over a very long time just
before the news came out that you could not take it for the rest of your
life.
My current doctor says that all of the natural vitamins and minerals that
I take are probably "the patch" that keeps me physically going. Everyone
reacts differently to different brands and types of vitamins and it took
many years to find the right brand that my body would absorb and use to my
benefit and now that I eat much less food I take very strong doses of
these vitamins and minerals. I have studied vitamins and minerals
and I use them wisely and to keep myself as healthy as I can.
I am controlling both the FM and the IBS, and even the insomnia at this
time in my life with my diet and I use "Tylenol three". Tylenol
three tablets are made up of 300 mg of Tylenol and 30 mg of codeine and I
take one or two in every 24 hours depending on my situation. I'm actually
lucky that this works for me and that I do not have to get into some of
the stronger newer scarier pain medications! IBS is a lot more
acceptable and understandable with both doctors and family and friends
than FM or CFS is. I also take another one of the oldest medications as
needed: Valium to relax my muscles. For whatever reason (FM?!) my body
will simply not respond to other regular muscle relaxants at all. My
doctor trusts me with my meds, and I am so paranoid that I chart every
single pill that goes in my mouth, the time, why I am taking it, etc. This
way too, with a foggy memory, I can go look at my chart/diary and make
sure I am taking the minimum of each medication. But at least these
medications are helping me live as normal of a life as possible, under my
circumstances!
I think the most important thing in dealing with any syndrome is for each and every person
to have the self-confidence to be able to list out their symptoms, and
believe in themselves and what's happening to them no matter what anyone
else says to them! Because these syndromes are so individual we are
the only ones that really know! I'm very lucky to have a doctor who
actually said "You know your body best." He treats several women who have FM and is
still enthusiastic about the world of medicine that he took up!
For myself I know that when I began to hurt all over and in some vague way
feel like I'm coming down with the flu it's most likely "an FM attack".
It happens intermittently - sometimes really bad sometimes only lightly
and can last for 24 hours or two days. It's so hard to describe what
the pain is. It's not really like overworked tired painful muscles, or the ache
all over muscle pain of a real flu... But it's similar. I have
more pain in my thighs and lower legs than the rest of my body normally.
Sometimes I just hurt all over, and feel my body becoming very
"tight"....even when I am relaxed, and engrossed in a good TV show - not
focused on my body at all! Also at
any given moment I can move wrong, cough or laugh too much and a muscle
around my rib cage will knot up painfully. I learned years ago that
I cannot laugh hysterically or I'm going to get what people call "a rib
stitch" only mine is very painful and does not go away for days! There are
other days when my dyslexia actually gets worse, and I have heard of the
"brain fog" that FM sufferers can experience. I often have memory
glitches and I know that this is both FM and dyslexia, as well as
age...now...
FROZEN SHOULDERS
The other hallmark of FM is often "frozen shoulders". I wish I had
understood before I started creating web sites - how much repetitive motion
from a hand on mouse out to the side of my keyboard could damage the shoulder cartilage
joints! I have been to physical therapy twice now for my frozen
shoulders (both sides but worse on my right-I am right-handed) and it was
always at the point in physical therapy when the therapist got past the
gentle beginning few weeks of getting the joint loosened that disaster
happened. The physical therapist (even my second one who said she
understood about FM) would try to push me and my shoulder to move farther
and more often and harder and all my body did at that point was say "fine
I am going to freeze up this joint so that you will stop doing that to
me". That is when I learned that you could actually have your
shoulder freeze back up from having therapy when you have an FM syndrome!
I finally went to the head of sports medicine at our university here and
I'm grateful that he understood that even surgery would not work for me
because with my syndrome and my muscle and nerve reactions the shoulder
would just freeze up again. I've learned what I can do and what I
cannot do and when I push too long and too hard with any action my
shoulder is going to hurt and start to freeze up again. Right now as
I'm writing this I'm using speech to text software because typing is one
of the worst things I can do. I highly recommend "Dragon Naturally
Speaking preferred 8" and a special microphone that translates my voice
into digital sound for the computer. (If there are any typos in this
story that's because the software isn't perfect) :-)
I'll also admit that I have been very
angry for a long time since menopause took away my hormones that were holding this FM at bay. FM can
also cause depression and once in while I will have days where I will just
suddenly become extremely depressed and I will have to just wait it out
until it passes. When a person becomes depressed, or even suddenly angry,
they can actually not know where it is coming from and can just start
acting out. I have to consciously stop myself and look at what's happening
and say wait a minute this is an FM thing there is nothing else going on
to be depressed or angry about. And other times I allow the anger at
the FM for what it is robbed me of in my life and sometimes I cry for an
hour or two. It's important not to bottle up these emotions because
that in itself can set off the FM symptoms! Living your life as
stress-free as possible with plenty of rest is very very important!
Not easy to do but very important!
FM and Relationships
I will admit that my husband has had a lot of trouble understanding FM and
accepting the reality of it. I think it's kind of a man thing-to
just want you to take a pill or go to therapy and be cured, when there is
no cure for this lifelong syndrome. Yet, thankfully he is the one that found a
newspaper article about FM and one lady's experience with her mother and
as he read the article I could hear in his voice that he was beginning to
understand and accept the reality of this a lot more.
FM and other long term serious diseases
can wreck havoc on relationships, and resulted in my husband and I living
in separate places as of early 2007, to give each of us more peace of mind....My life
changed with my living on my own...I am also a "co-dependent" and I really
could not truly find myself unless I live alone (and stop focusing solely
on my husband as insecure co-dependents do)...a very BRAVE thing to do in
the face of my illness and at my age...but my spirituality is making this
possible, with the help of my husband who still loves me (we are soul
mates, but with our personalities, and my illness just makes living under
one roof impossible....he went through a lot FROM me too, while HE waited
for me to say that we need to live apart, and as I said, I am lucky that
he cares so much he is living 5 minutes away and still supporting me with
help and being there).... I have made leaps forward in getting back to the
happy inner child that is at my very core, this little 'pollyanna' that
has all my life "fought back from the edge" to keep living, to find my
life lessons and purpose in life...
I am also very
grateful that in the last couple of years my mother has started asking me
questions about FM and what I go through with great concerned interest. I
know this is because she has read more and more articles on FM in
magazines and in newspapers and has realized that this is definitely a
very real thing. Although a lot of aspects of my growing up were horrific
at least there is some relief in living in open-minded California ;)
where doctors and the media are more open to these syndromes. I know
there are a lot of other states and places where doctors still do not
understand or accept its reality and that's where the Internet comes in -
being one of the most helpful tools in dealing with our life situation!
Main FM symptoms
that I do have (besides the IBS, dyslexia, etc. already mentioned):
STRESS of any sort (physical and emotional) causes FM to flair up in any and all ways! It's
important to have as stress free environment as possible! * MUSIC helps most
people to relax too!
"Foggy Brain" is something most FM folks talk about...my brain (thought
processes) just seem to STOP suddenly and I have missing words, while some
folks say they just go around "in a fog". I know my brain does not operate
or "fire it's little nerve endings right" for both FM reasons as well as
my Dyslexia. I have had moments of "missing moments in time" when in a
very stressful situation...someone will say "don't you remember, you just
said or did this....?" and I will be rather shocked that I have no memory
of what went on AT ALL... a very scary thing, until you know it is
"normal" for this syndrome!
Strange, or backwards reactions to medications.
Feeling like I am coming down with the flue...achy and just "not well",
weakness and it takes a while to be sure if I actually DO have a flue or cold
virus...and then it is like being sick on top of being sick! - which is
why I tend to avoid "germs" at all costs...because it is so hard to simply
manage FM, without feeling worse by getting a virus. When I DO come down
with a cold, or flue, I have to take more of my meds for FM, take more Vit
C, drink more water, (tell a person with IBS to "drink lots of water or
fluids...!!!) and just wait it out....
FM with: "real" COLDS and FLUE...Lowered immune system
Imagine feeling slightly sick all the time, or at least off and on, and
then add a cold or flue virus on top of it...which especially for me,
exacerbates all the FM symptoms. I really have to be strong and take very
good care of myself and do MORE of all the meds I use, and "get through
it".... just to get back to my "norm"... So I do over-protect myself
during winter. I get flue shots and lucky me, my doctor says we can
have a "phone check up" in winter, so I do not have to go into the office
with all the sick people, because he likes to see me every 6 months.
I am so grateful that he understands! :)
Pain: very low pain tolerance, and a variety of
other aspects of pain-
The sudden areas of skin that simply HURT, like the surface of my skin,
while it looks NORMAL will be so sensitive to touch of ANYTHING - the pain
is awful! It can pop up in patches here and there, mostly on the inner
side of my upper arms, inner side of my thighs....and last for a day, or
three....
Pinching "nerve" pains...intermittent sharp pains, or dull deep
pains anywhere....anywhere at
all in my body.... All my life I thought it was some strange and scary
disease, but have come to say, oh well, that is just another annoying FM
pain, and try to ignore it.
If the pains are spasm pains anywhere in my intestines - and by the way
your intestines are located from way up high where we think of our stomach and above
to way down low, front, back and sides - then I know that is
IBS...."irritable bowel"...of course I have had both many sessions of
those awful tests - xrays with that chalky stuff you have to swallow and
the "look up the other end" to make sure that is ALL it was...including a
die test for my liver...or was it kidneys?.... All my organs and systems
were declared NORMAL but for "a bit of a smaller opening from the small to
the large intestine, which "must be the reason your digestion is so
slow"... ya right... it's IBS!! BUT knowing is half the battle....as
knowing can help one relax and then it will lessen the pain a bit...
I have heard that often a trauma to the body can set
off FM or cause it to become full blown. I know I have had it all my life
but it's worth it to note that very active people at any age, after an
accident can have their FM symptoms show up with an intensity.
I was "rear-ended" in my car two times in my life, and after the first
time that "didn't seem so bad" my neck and spine were never the same.
I tried a chiropractor but that did not work out so well, and so still
resort to ICE PACKS whenever part of my neck, shoulders or back really
knot up, or my spine seems to have twisted. I do get the pains radiating
off my spine, but my spine itself is fine. I have lost a lot of my "range
of motion" from my frozen shoulders and in my neck. (I do have some
arthritis/bursitis that has shown up on x-rays now)
Chemical Sensitivities, Allergies
I just finished reading an article in the magazine "FM Aware" and it
reminded me of another aspect that I had not necessarily connected to
Fibromyalgia. This is a chemical sensitivity, meaning I am
oversensitive to things like perfumes in household goods like detergents,
hand cream, soaps, shampoos, etc. I seem to have an overdeveloped sense of
smell and perfumes literally make me sick. I have been this way most of my
life to some degree but in my later years I worked very hard to eliminate
perfumes from any and all products that I use in everyday life.
After reading the article it appears that at least half the people that
have Fibromyalgia have this companion aspect of being extremely sensitive
and allergic to chemicals as well as other allergies to things like dust,
straw (like when I had my horses!) Etc.
When I was growing up I could not tolerate the developing intensity of the
smog in the San Fernando Valley (and inland valley in the County of Los
Angeles, California.) in the early years when the smog was not bad I was
having a terrible time with it when other people were hardly bothered at
all.
*These are just MY
symptoms! FM manifests differently and to different degrees in everyone*
Symptoms I have had but have not heard mentioned in
conjunction with FM:
Ringing/hissing in my ears - which came on the same time my FM got worse
and I went into menopause.
For almost all my life, the FIRST BITE OF FOOD at any meal would cause the
glands or nerves of those glands under my jaw bone HURT really bad...and I
thought all people felt this... but to me, it must be FM...
"Ticks" or jumpy nerves around my eyes, mouth....more in my younger years
thankfully, those are rare now.
Over sensitive to noises, anything from small
hums from transformers to neighbor's noises of all sorts.
I hate air blowing on me - heaters, air conditioners...does not hurt, just
irritates me! (I have heard other FM sufferers say that the air blowing on
their skin DOES actually hurt! It does not surprise me).
As I look at all of these, except maybe ear noise, most seem to do with
NERVES which is now known to be the base of FM problems, they make sense.
IS FM/CFS all the time!?
There can actually be GOOD days, or a few
GOOD HOURS....enjoy those intermittent times and be careful not to
over do it... though I admit to overdoing it myself sometimes, because I
just HAVE to accomplish a little more than what is normal for me. I know I
will "pay" for it, but life is not worth much if you don't stretch a
little as you can. Then there are medications to help you with the after
effects...while you (I hope!) sit and think of the good time you had, or
the thing you finally accomplished!
Being brought up in a culture where focusing on oneself this much is said
to be selfish makes it very difficult to be okay with it. But I have
come to a point in my life where I realize that with my health issues
would just get worse if I did not take these extreme measures to take very
good care of myself! In fact quite the opposite happens
when I do devote
this much time to taking care of myself... I feel better and I actually
have more energy and time to give to others! :-)
I just have to remember that sometimes, maybe many times, it's OK to say
"no I'm not okay" and to gently let others know that I need a little extra
understanding and compassion and/or "space" at any given time. I think that most
people are quite capable of understanding if you just give them the chance
and enough information. It's also true and something that I need to
understand myself is that some people in the world just have no frame of
reference, no experience, to relate to what I'm dealing with. That
is not anyone's fault - that's just the way it is and so it's important
for me not to take offense or feel bad if someone simply cannot understand
my situation.
GRIEVING THE LOSS OF
PARTS OF YOUR LIFE...
It's a very real thing...to feel grief for the loss of a lifestyle and
activities that you have had before any syndrome or chronic illness came
along. It's the same kind of grief that we experience with the loss of a
loved one - we go through all the same "stages" in any order and to
different degrees. It's important to recognize and work through those
feelings!
To be honest I am still grieving for the loss of my physical ability to
create 3-D mesh models and textures for my online store. My shoulders have
gotten to the point where if I try to do that type of work I will lose the
limited range of motion that I have left, and I would no longer be able to
even do the "fun art" that I want to do as well as visit the online
communities, do research, and communicate with friends.
I am still trying to get to the point of acceptance and to be able
to say I am so grateful for even HAVING the years in the
creative/commercial world at all...that I have a TREASURE of memories of
good times; dear friends that I learned from, laughed with - who were/ARE
such a huge part of my art life!
GETTING HELP
There are forums on the Internet for FM and IBS etc. and I would strongly
suggest making use of them. One of the reasons I'm writing this is
that while many of my friends know that I have health problems I had
hidden the extent of them out of embarrassment or a misplaced sense of
shame or perhaps the fear of rejection - but I've realized just recently how
sympathetic and comforting friends can be if you just open and be honest with
how you're feeling and what you're going through, so that is why I am
"coming clean"... Isn't that an interesting phrase? Because I think
it is cleansing to be open about one's life difficulties, be that physical
or emotional...or both! :)
http://www.livingwithfm.com/index.html
I just watched and ordered many more copies to
share with my doctor, my family and friends!
Just watching made me feel SO much better, validated and encouraged.
Again, I cannot say enough good things about Daneen and her husband, and
her dear Mom that has FM for producing the DVD on Living with FM....!
A helpful, warm friendly Forum Board on Fibromyalgia AND other syndromes,
chronic pain etc.-
http://p069.ezboard.com/bsunshine35446
I highly recommend stopping in for a visit! You don't have to register to
visit, and read and find
if you would feel comfortable! I sure have been welcomed and am so
glad I have joined! :)
The National Fibromyalgia
Association I just donated $35 and look
forward to their magazine FM Aware. There are a LOT of resources on this
site!!
***************************
My Lung Problems ( I have no idea if this is related
to FM or not, but it's another major health problem that I have to deal
with and "accept".)
I had pneumonia so many times in my
life I ended up with a very odd bronchial thing that sounds like the name
of a dinosaur...brachia-something...and if I cough too much I cough up
blood! Scared the DICKENS out of me the first three times that happened
after my last pneumonia and pleurisy a few years ago that had me flat out
for 6 months till I got with the head of the "lung" doctors at Scripps
Hospital.....Finally after so many trips to the hospital and xrays and
tests for TB...I was told "don't worry about it" - just use this cortisone
inhaler forever and don't cough too much... (coughing is one thing that
will set off my FM- muscle spasms and rib cage muscle lock ups really
fast).
No NEVER smoked, but grew up with my Dad's "second hand smoke in my face
since I was very small... :( .....and no this is not life
threatening as long as it is controlled and I don't get pneumonia
again...and yes got the once a life time pneumonia shot.... But I am sure
the cigarette smoke and the many illnesses are what caused this weakness
in my lungs, so now I have to just accept it, deal with it.
I can get a really bad "months long" congestion reaction to "tile cutting
dust" like when we had our kitchen tile replaced by a nice solid counter top
material. I avoid dust and paint fumes etc, like the plague .... and
I do have to watch out for smoke if there are any fires near...
Once I got my own home nebulizer machine when I feel the deep congestion
coming on, I use it and prevent the complications.... I have not coughed
blood for about 3 years now... but as a kid in my generation we were
taught: cough up blood, your dead...!! That certainly contributed to my
paranoia about germs, with a low immune system anyway!
I have also just bought two more "heppa filter" air purifiers that help
keep the dust under control.
Comments? Questions?
Note: all the e mail links on this site are "fake". I did this
because of the heavy use of "spam bots".
If anyone wants to contact me, they can via the Instant Messages at Renderosity,
PlanIT3d, DAZ.
My greatest FEAR is "being sick and being alone".... and now I am
that very thing - at least in the physical aspects of this life. I have no one
close to lean on, be co-dependent on, and from my terrifying childhood in
regards to "unknown illnesses", having ALL the "real" illnesses possible and
being told I would die at age 7 of a disease I didn't even have, I grew up in
terror of being sick, and of no one to take care of me. I was in total terror
when my Mother left me alone to go to her night school (my Dad was there but not
really and that is a another story).... and my parents did not have ANY outward
spiritual beliefs, and so there I was: no identity but a sick child, scared and
alone....and lost.... but with clues to my spiritual path here and there...and
that is where spiritual story begins...
The Other part of who I am... the story of
my Spiritual Journey
|
