Living with Silent Syndromes


"I Look Normal..."
but if you don't know me, you don't know that my body is ill, and though I will not die from this,
there is no cure. I live with pain and I am unable to eat normally, function normally...but I do my
best to be happy, treasure the good times and create magic now and then....

            CLICK HERE FOR MY GALLERY OF FANCIFUL AND ENCOURAGING 3D ART!

The reason that I am sharing this is that for 60 + years the thing that I have needed
most in this life,  living in a body wracked with multiple syndromes is simply:
understanding & acceptance!  The terrible isolation of living in a time when the medical
community, one's family and friends could not understand or relate to me has been
the most difficult part of my existence.  Only now I am finally able to reach out to a
world waking up to the reality of these syndromes - and begin to seek out the understanding
and acceptance of others while at the same time begin to understand and accept how these
syndromes have affected every aspect of my life and my relationships.

I do know that each person's path to finding inner piece and coping mechanisms is different. Scroll down for some thoughts on GRIEVING for the loss of a lifestyle and activates lost... It's a very REAL part of getting to "acceptance" .... I also have a few links for GETTING HELP.

This is my experience living with the "silent syndromes" - chronic, painful health issues 
that happen inside your body - hidden from view of family and friends, often causing them
to treat you as though you are crazy, lazy or a hypochondriac.... maladies where you LOOK
normal, and even medical tests say your normal- but your body is anything but normal! 

What is it and how do you say it? Fi-bro-mi-al-ga

Fibromyalgia - FM or Fibro for short / Chronic Fatigue Syndrome - CFS

FM is a "syndrome"  
n. 1. A group of symptoms that collectively indicate or characterize a disease.
It
includes just some of the following: painful points, low pain tolerances,  foggy mind-memory, dyslexia problems, muscle spasms or "lock-ups", insomnia, low immune system, tendency to "frozen shoulders", Irritable Bowel Syndrome - IBS for short and much more.  UPDATE: CLICK FOR NEWS ON THE PROBABLE CAUSE OF "FM"!

My doctor told me: "You are a case of one"- not a fun thing to hear, but a challenge
 I am STILL and always trying to rise to, and conquer! I have decided to "come out of the
 closet" on this subject, because above all, it's important for all of us facing any CHRONIC ILLNESS, and even a serious life changing injury to know: 
 1) you are NOT alone   and   2) there is NO SHAME in these health issues!

I highly recommend this Fibromyalgia website and the DVD: "Living with Fibromyalgia"
http://www.livingwithfm.com/index.html

I have 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.

A helpful, warm friendly Forum Board on Fibromyalgia & other syndromes, chronic pain etc.-
http://p069.ezboard.com/bsunshine35446

If you have any questions, feel free to contact me, but understand that I only check this e mail about once a month:
E Mail (without spaces!) is:   lyne20008  @  gmail  .com

 

 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:

UPDATE:  The art of dealing with Tofu for a major food source (as well as how I manage my diet, at my later age)

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.

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 a painkiller and a muscle relaxant, pretty much around the clock.  I'm actually lucky that the particular "old fashioned" medications work 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.  For whatever reason (FM?!) my body only responds to specific ones. 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!!


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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 finally upgraded to the highest quality air filtering system for my forced air heating and air conditioner, along with having all the ductwork replaced, well sealed and sterilized (in the duct work that could not be replaced).  I've made my home a well-sealed protective environment. As long as I wear a "germ mask" whenever I even step out of my house, I can keep viruses at a bare minimum, because there is nothing worse than the pain of a virus ON TOP of the "normal" pains of FM!


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.

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