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Do I Look ill?


No, most people looking at me or this picture of me taken four years ago sould say no.
I don't usually have any pictures of me as I'm the one behind the camera taking the pictures, but I had a great opportunity to have a profession photo shoot and I took it. I don't always look like this - who could!! But I sure have a better understanding of why the models and movie stars look so great all the time - they have professionals doing them up every day.

I should give you some of the definitions of the many words here that you may not understand if you don't have CFS before you read my story.

CFS - Chronic Fatigue Syndrome
CFIDS - Chronic Fatigue Immune Dysfunction Syndrome
ME - Myalgic Encephalomyelities
PWCs - People with Chronic Fatigue Syndrome
YPWC's - Young People with Chronic Fatigue Syndrome
Normals - People who don't have CFS
Brain Fog - a dysfunction in the Brain (I've heard it's like a permanent hangover, but not being a drinker, I wouldn't know if it's the same - but I do know that while in Brain Fog - thinking is impossible. You can't organize your thoughts, process information or many other things that Normals do so easily. You loose words, say the wrong things and more. Let's just say you don't want it!!

Crash/Relapse - When a CFS person has overdone it and cannot do anything at all.

My CFS Story

Well, hopefully you've met me before CFS (About Me) and now you'll get to meet me as I am today.

While working for the Provincial Government, I caught CFS. No one at the time knew what it was but a terrible flu hit the office and everyone was off sick for many weeks. I remember thinking that since I had inherited bad lungs and constantly caught pneumonia - that I'd be next but I wasn't. The glands on my neck swelled up but I didn't catch the flu and was amazed and happy.

How was I to know that the virsus had already hit me and was working inside of my body.

Well, for several months, I kept on working until one day I realized that no matter how early I went to bed - I always seemd to wake up tired. So I went to see my family doctor - after all for many years she had been wonderful. She was quick with her diagnosing and always prescribed the right thing and we always got better. But, this time would be different.

I think I should take this time to thank my doctor. I know how many people with CFS have gone through the Hell of facing their doctor while they are told, there is nothing wrong with you, you should see a psychiatrist. My doctor knew me. She knew that I would never make anything like this up. But for the thousands and thousands of CFS people who have gone through their doctors doubts, I thank my doctor for not doubting me.


Here is where the first testing started.
First six tests were for mono and they all came back negative. Seventh test was for Hepatitis B but also another mono - which this time came back as positive to mono. Well, at least I knew Mono wasn't serious and I'd be up and about in three months.

WRONG! Three months came and went and I still wasn't improving and more and more symptoms were starting to appear like "sleep disturbances" - I could no longer sleep. She sent me off to a blood specialist who's results were that my red blood cells were a mess. Apparently, they are suppose to be perfectly round with a perfect round center and mine were all disfigured (they looked like a broken egg yolk in a frying pan). His final diagnosis was that my cells were disfigured from having mono.

Little did I know that CFS had already invaded my body was doing it's damage.

I now had two symptoms(but the list would grow):

First, the fatigue ( which has never went away) was the first symptom to appear. And if you think you know what tired is....you have no idea!! I had been tired before the virus but it was always easy to bounce back after a good night's sleep.

This fatigue never went away - no matter how much I slept and it was a fatigue like I've never known. It not only affected my body but the exhaustion that my mind felt was unbelieveable. I didn't care whether I lived or died. Nothing mattered - I was too tired to care about anything.

Then suddenly for no reason - I couldn't sleep.

This in itself was strange but it was worse with CFS because sleep is the only remedy to regain energy, so now I was desperate. My family physician who although was wonderful and I was lucky that she knew me well enough not to send me down the road of psychiatrists - didn't know anything about CFS so she just keep treating each symptom as it came up.

Here is where I got lucky. I was president of a community and one of the mother's who lived there was a nurse who worked in a lab. We were talking one day about everything when it came up that I was ill. She asked me if I had ever heard of CFS and I said no. She told me about a doctor that sent hundreds of patients to her to have their blood tested and that my symptoms sounded just like all of the other patients.

I called Dr. Hyde, who at that time was the first doctor in Ottawa to know anything about CFS and made an appointment. He was so busy that he had to hire another doctor, Dr. Anvil Jain, who also knew a lot about CFS.

Since fatigue is a common symptom of many things, you first must have a two hour interview to see if CFS is the cause or not.

They have to eliminate everything else, before they can even begin the testing for CFS.

They need to make sure that there is a high possibility that you have CFS before they send you for a blood test.

The blood test is expensive and they used the AIDS test as it is the only only that broke down the immune system. Well, he suspected I had it and off I went to have my blood checked. I received a call shortly after that asking me to come in for a visit. My results were back and so back to the doctor's I went. I received good and bad news. The good news was I wasn't going crazy and I wasn't dying. The bad news was that I definitely had CFS - and not only that but out of the three viruses that cause CFS - Cocksackie, Echo and Polio - I had the worse case of the Polio virus.  It was so bad that the guy who did the test in London phoned in my results rather than just mail them. Great news - I'll live but I'll feel like I was dying or at least want to die!

The brain fog came - which for me was one of the worst symtoms (next to the fatigue). I used to have a photographic memory and now I figure I have three memory cells left - and I can't find them most of the time!! HUMOR HELPS!! This sure made life easy for my kids - they really enjoyed the fact that I couldn't remember anything and boy they sure used it when it suited them. My husband, at the time, was at first very caring, until he found out there was no cure. Although I don't believe this was the reason for our break-up (husband number two - Mickey)as there were many more problems - it was here where I felt his resentment. All of a sudden, the woman he married (who did it all - SUPER WOMAN!!) couldn't do it all anymore. She didn't even have enough energy to do much of anything anymore - so it was natural that he would start to feel resentment.

Many more symptoms kicked in and with each new one I became more unable to function normally. I was resolved that this wasn't going to end my life! I'd fight back with everything I had. I've tried vitamin therapy (which did make me feel better) but they (the Government) took it off the drug card and now it's too expensive to buy. I've tried some natural stuff and I sure felt good until I ran out - then BOOM - my body crashed. I guess the problem with this was that it didn't cure or fix me - it just masked my symptoms of fatigue and made me think I was okay until I stopped it. Listening to your body seems to be the only way to deal with this. If your body tells you to rest - then rest!! I'm not very good at listening to my body so when I'm in a relapse I have no one to blame but myself. I do all the things you're not suppose to do when you have CFS - so as you can imagine - I spend most of my time paying for it through TOTAL EXHAUSTION!!

Well, even after being diagnosed with CFS - I fought it! I kept going from one doctor to another hoping that one of them would tell me that the diagnosis was wrong. I was willing to believe I had anything but CFS. My hopes were quickly smashed when one doctor after the other told me that although they didn't believe in CFS (which I told them I liked because if they could make me better - then I wouldn't believe in it either), would send me for blood tests and the second visit was always the same..."Sorry, don't know what you've got but I can't help you!". Sure wasted a lot of time doing this but it was all part of the GRIEF process.

I was still in denial and had I decided I wasn't going to take this lying down (pardon the pun!!), so I signed up to go to college to study to be a social worker. This had been a dream of mine since I was 11 years old.

So before my marriage ended - I was in college full time studying to become a social worker. Funny, everyone told me that I wouldn't be able to do it! How can you study when you can't remember anything?& Most would say that it's impossible, but with help from others, you can do it!!!

Well, thanks to two dear friends (who deserve mention) Deborah Janveau-Maisonneuve and Fred Sadori, I was able to do it.

I couldn't retain anything - so it was useless to study days or weeks before an exam (like most people do - right??) so Debby (only her friend's are allowed to call her that) would prepare all sorts of acronyms to help me retain information.

Both her and Fred would question me over and over again until at least some of it stuck. They made sure that I got through and I thank them both for that!

Good friends are hard to come by....but friends like this are even rarer. I suppose that's why people with CFS really value friendship. Not many want to have a sick friend (one who is always sick and can usually never do anything with them or sometimes go for weeks or months without calling because I'm too tired to talk)- so if we find a friend who still wants us after alll of that - we treasure them!!

So Debbie and Fred, if you ever get a chance to read this - I hope you'll both know that you two are my dearest and best friends and I treasure you both every day.

So, does my life end here. No, I went on to find Mr. Right (Mr. Perfect doesn't exist so I had to settle for Mr. Right -LOL!).
Now, I'm engaged to a wonderful guy who is very supportive in all that I do and is sometimes over-protective but I don't think I rebel against that too much - it's so nice to be pampered!! He isn't a caregiver (in the true sense of the word) but he cares enough to try to ensure that I sleep, that I have no stress and that I take things easy.  I guess for now - that's the best he can do! It's more than I had hoped for because most of the women I know with CFS say that they can't date normals (a term we use to describe people who don't have CFS - so don't think you've been declared legally sane!!HA) because the mere mention of a nap has them running. Most women who are single with CFS are looking for men with CFS because they figure that is the best person for them - someone who knows exactly how they feel. I guess whatever works for them but I don't know if I'd trade mine in on someone who was as sick as I am!! Who would cook??? I use M & M Meats a lot - they have great pre-cooked meals that take only 20 minutes to prepare. I used to cook lots and made many great meals. I was very well known for my Spagetti and Lasagna Sauce (which I still occassionally make with Doug's help).

How does CFS affect me?

Well, I've always been a positive person (always trying to see the positive side of things in everything that happens) and I've discovered that although CFS is a terrible disease to have, it has also added many new things to my life that I didn't have before.
So CFS has had two affects on me a negative and a positive.


The Negative Side of CFS


Angry at Myself
Some of the time I'm angry at myself because I can no longer do what I use to. I also find that people can upset me because even when I explain to them about my illness, they still don't understand the limitations it puts on me or my life. They still expect me to act like a "Normal" - someone who isn't ill (so don't think just because I call you a normal that you have been certified sane).:)

Angry At Illness
So how do I feel about all of this?? I'm hoping that the links will provide you with information about CFS and how it affects your life and what you can do to help someone with CFS. This illness takes your life away. It takes all your dreams, plans, hopes and goals and says "Sorry - no can have!". You're lucky if you have the energy to function on a daily basis. I'm not bitter - don't get me wrong! I didn't ask for this but it's here and there is nothing I can do about it. I live a relatively smaller life but at least I can live some kind of life. Many with this illness are bed-ridden for life - so I guess I'm one of the lucky ones. I'm managed to pass my 6 year test period and am now considered "Moderate" - which means that I can do some things but I am still prone to relapse when I overdo myself or am under stress. Problem is - this virus didn't care that I was overactive and my mind still thinks in the old ways (BC). I wake up thinking - today is the day I'll do this and that and out of no where my body yells back saying "Forget it girl, we aren't doing anything today!". I hate a body that rebels so quickly and easily and tells me what I can and cannot do.


Angry At Others

I know so many others feel angry not only at this illness but all the other things that create problems for people with CFS. The media, who portrays this virus as being curable, family and friends who think that you should just change your frame of mind and you'd be better, and even some of the other people with CFS who say I got better - the final blow!

We not only have to deal with this illness but also everyone in our lives who constantly barrage us with "See, they got well - you should to!" or "Just get up and do things and that will take your mind off of it and you'll get better by not thinking about it". We've heard it all! Do you think I enjoy being ill? No way - give me back my life, my memory, my ability to concentrate, to organize my thoughts, to process information so that I understand it!! Give me back my health!! I'd do anything to get better - I've tried everything. It seems if something works for one CFS person - we all run out and try it. Problem is we all are different and therefore what works for one won't necessarily work for another but we never give up trying. Do people think I choose to be sick? I didn't even ask for this and I sure wouldn't if I had a choice but I didn't. No one would ever question asking someone with cancer or some other disease but with CFS - we're always being questioned. If my own family doesn't even understand my illness or the effects it has on my life - what chance do I have getting others to? I sure hope that by sharing my story that some will understand.

Loosing Friends
Lossing friends is another negative thing that happens with CFS.
People don't like having a sick friend. Who would? I guess they get tired of asking "How are you?" and receiving the same anwser.
We can't go shopping, or do the things we use to. So, most of us loose our friends.

Loosing Family
Loosing family is another thing. Eventually even your family gets tired of hearing that you are ill. Your relatives stop inviting you to functions, your parents and siblings no longer support you.
Your children and spouse, although they have no choice (neither did I) try to understand but can't. They can remember the person you were and what you used to do. They still want that person back.
My children do not know alot about CFS, but they know I'm sick.
They don't understand how or why (neither do I) but


So that's my story! CFS is a part of my life and there is nothing I can do about it! I can minmize the relapses if I behave but like most people with CFS we try to hide it so we try and behave like normals. I don't even think my family really knows how sick I am, but then again, it's my fault not theirs. I've never sat down and explained it to them - it's too complicated and takes too much time and energy.  They know I have CFS but they really don't know what it is and so I just leave it there hoping someday - someone will pick up a book and read up on it and realize how hard all of this has been on me and on them but most importantly - they'll know why for the later parts of their lives - that I was too tired to be the mother I used to be. They still don't understand it when I go for a nap - they think I sleep too much. I sure wish that was true - that I could get enough sleep so that I'd have energy - but that doesn't happen. The little energy I have is spent on them and they don't know it.

I've read many peoples' stories who have CFS and I sure can relate to them and how they feel. I guess you have to have it before you can understand it. Like the old saying "Walk a mile in my shoes!" - if you've got it - then you know what I mean. If you don't - how can you understand??
Home Pages of other Sufferers with CFS (see link at bottom) will show you how it affects us. If you visit them - you'll get to know many more people with CFS and there are millions. All my CFS Links should provide you with enough information regarding this disease. I hope you take the time to read up on it.

Please read "How to Live with ME/CFS" and Understanding the" Emotions surrounding Chronic Fatigue Syndrome" in the link to What is CFS?.

May 12 is Chronic Fatigue Syndrome Awareness Week - so hopefully you should learn something in this special time regarding this illness.

The Positive Side of CFS

The other side of CFS and how it affects me is more positive.

Before CFS I was constantly in the fast lane, doing so much more than I could handle, but that didn't stop me. I worked, raised a family, kept a clean house, did laundry, cooked and did dishes. I had no time for me. I never took bubble baths, or just relaxed. I was always on the go. Now what good things could CFS have on my life. If you read the 19 Good Things about CFS, you'll see there is a positive side to everything. Other good articles are :The Gifts of CFS and What CFS Cannot Do.

I find that CFS has changed my life but not all for the bad.

Many good things came out of having CFS.

It has made me stronger.
It has helped me prioritize my life and spend energy only on what is really important.
It has given me many gifts which I did not have before.
Now, I have time for me. For the first time in my life, I've learned that I can relax. I've learned how to relax and how to appreciate what I have.
There are people worst off than me so I've learned to appreciate that although CFS is bad - it isn't the end of the world.
Also, I've acquired new and better friends. If someone can like you for just you, even with CFS and the limitations, then they are better friends than any others.  Some are on line friends and some are not.
My on line friends can be found on my Friendship Realm.  

My Off line friends.
I have one really wonderful off line friend. You couldn't ask for a better friend than Tracey.  She came into my life through my fiancee but she'll be here forever now. So Tracey, if you ever come to this page, I want you to know the following:

You'll never know just how much your friendship means to me.
You always understand when I'm too ill to do things. You always seem more aware of my illness than even my family. You know more of my relapse triggers than most of my family.
Thank you...for not just being my friend, but for being so wonderful.
You can visit a special dedication to Tracey from here.
Tracey's Place


If you think that CFS has taken your life away.....go to a Children's Hospital or visit one of the Children's Sick Kids Ring and you'll soon discover that your problems with CFS seem pretty small to those of some of these kids.
Sure I have CFS but I'll live. My life will be smaller but I still have one. So for those with CFS - I know how hard it is.....but there are worst things in this world than CFS. Be grateful that all that is wrong with you is CFS. Be grateful for your life and your opportunities that you can still have. Share your gratefullness with others. Spread the joy of your life to others.


Apply it to your life....make sure that each day you make an attempt to brighten the life of someone else. Do random acts of kindness to anyone you can. Why? Not only will it take the focus of CFS out of your life, but you'll be enriching someone elses' life.

Life is too short to spend it feeling sorry for yourself. Life should be a joy and you can have that when you give some away. The amazing thing about sharing happiness is that it never ends. You can continue to give it freely and your supply never runs out and what comes back may someday make you realize that it was well worth it.

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