My journey through CFS

[gy1]

Hi everyone, I'm new to this forum - wish I had found it years ago!

Since I am new here, I thought that I would write a bit on my adventures with this wonderful illness... perhaps my experiences can be of assistance to someone else... and if not, well this is the first time that I have found a place where it seems people actually understand what I've been going through.

It all started about four years ago, at least that's when I believe it began - can't give a particular date. Just one moment in my life I was on top of the world, and the next I was falling through the seventh circle of eternal hell.

Now I realize that the incident that was the root cause was a bad relationship, one that I was in for two years. Why did I stay for so long? Because I loved the person. However, it was one of those incredibly stormy relationships, where one moment you are in complete ecstasy, and the next in the depth of hell. The first year through this relationship left me getting physically sick about once every couple of weeks.

One day I looked around at all the damage done around me, then I looked in myself and saw only an empty shell, and that's when I knew that I needed to end the relationship. My health was a mess, my finances were a mess, my relationship to friends and family were a mess, my ability to trust myself or others was shot. But why did I stay so long in the first place? I don't know, was it because I was in love with her, or because I was addicted to her and the drama? Perhaps both.

Who knows. All that I know was she was an emotional mess when we met, and I was whole. By the time it ended she was whole and I was an emotional mess.

Surprisingly, on the day that I ended it for good, I didn't shed a tear... but I felt a part of me die off. I then went to work on repairing my life.

Only this was unlike past difficulties that I had experienced. For some reason, things got worse and worse. It started out with stomach problems that were diagnosed as IBS. Then fatigue and mental fog (which got worse over the years), sensitivities to foods that before I had no problems with, followed by anxiety and a feeling of derealization and depersonalization (like reality wasn't real.)

Over the years things got worse and worse, until about a year and a half ago when I was literally in bed about 16 hours a day and could not work more than a couple of hours a week. At one time I didn't even leave my apartment for a couple of weeks straight.

Before all this I had a successful business, and was in my late 20s / early 30s, depending on when you would have asked.

People told me that it was just me getting older. 16 hours a day in bed for someone who had just turned 30????? That used to really piss me off.

Others told me that I had just overworked myself. This also bothered me - before I could work 80-100 hours a week, and still go out several nights a week. My problem had not been that I had no energy back then, but perhaps that I had too much.

Thankfully the only thing no one could accuse me of was being lazy - I had been working since I was in fourth grade, had the highest grades in school, and had a successful business. That was before, afterwards I could read a book and have no idea what I just read - assuming that I could muster the energy and motivation to read.

It was while in bed for 16 hours a day that things began to change. One day I looked at my life falling apart, and instead of being depressed or feeling self-pity, I got really, really upset. Not at myself, but at this condition, whatever it was. The life that I had was not worth calling a life, and I was determined to overcome this, or die trying. It sounds silly writing this now, but back then it really felt that I was declaring war on my mortal enemy. The feeling of rage, and my declaration of war gave me the energy to begin my battle. I knew that it was going to be me or it, but one of us was not going to last long.

I would like to say that that was all it took to vanquish this evil creature and reclaim my life, but it was just the beginning, I still had a long hard road ahead of me.

I had been to doctors before, but no one could find anything wrong. And those doctors who prescribed medication for the symptoms only caused more problems. While their intention was good, I had become so sensitive that any medication stronger than aspirin caused serious side-effects. So I said the heck with it, and I decided to become my own doctor. I got a hold of every book on my symptoms that I could find and began doing some investigation.

I still have in my library almost a hundred different books. Most didn't do much for me. Some led me in the wrong path, and made the situation worse.

However, there were two books that had a dramatic effect on my life. The first book was Finding Your Own North Star by Martha Beck.

In the beginning of this book, she has a quiz that you take, where she asks you about 20 questions about how you live, and the quality of your life. When I read those 20 questions I started crying. I remembered the time in my life when I would have answered every question with an Always. Now it was Rarely or Never.

The premise of this book is to lead you to your true destiny, to your North Star. Using the tools in this book, I was able to find my inner voice - and that voice has not steered me wrong yet.

The second book that had a dramatic effect was Adrenal Fatigue by Dr. James Wilson. I realize now that adrenal fatigue is an effect, and not the root of my problems. But by this time I had so little energy for life, that I had to work on healing my adrenals before I had the energy needed to deal with the root causes.

So step by step I began to put into practice what I had learned from these two books, and in fact from all the books that I had read. I would like to say that it was an upward journey like an arrow, but it was not. There were many false steps, many trials-and-errors, and many set backs. But there was also progress.

Along the way, while in the process of trying to improve me life, I had trouble with my eye and went to an opthalmologist. Every once in a while you come across a really great doctor, and this one of them. He suspected that the problem was an auto-immune disease and referred me to a rheumatologist, who turned out to be one heck of a doctor.

He spent over an hour asking me question after question and listening carefully to every single one of my complaints. Then he had me do a few hundred tests... okay, I'm exaggerating but you get the idea.

After the tests came back, he told me that everything looked fine, but that he believed that I had a real problem - that it wasn't in my head. He proposed that I had fibromyalgia or chronic fatigue syndrome. And that's how I was able to name my enemy.

So during this whole time I had tried one supplement or another, one treatment or another. Probably tried over 100 supplements. Most did nothing, some caused more problems, and a few were golden.

One that worked especially well for me was Adrenal Health by Gaia Herbs. There was a time when I was popping about 75 - 80 different pills a day, though I have weaned that down to about 10 by slowly removing anything that was not providing me with a noticeable improvement.

I also made an inventory of every one of my activities and responsibilities. Basically anything that expended time or energy from me. I then divided the list into things which brought me joy versus things which drained my energy. From the list of things that drained my energy, I prioritized all the items based on how much of a drainage they were.

I then made a goal to permanently eliminate one item per week from the list of activities that drained me. Some things were easier to eliminate than others, and there was a lot of guilt along the way, but eliminate I did.

Between the supplements that worked, all the elimination, and the pursuit of my North Star, all the stress on me began to loosen. But then something strange happened... I felt hollow.

The stress was gone, but there was no joy. The symptoms were more manageable now, but I still felt that I was not me. So I searched and searched inside of me, now using the tools in Finding Your Own North Star. And then one day it hit me like a tidal wave...

Incredible, incredible sorrow. The emotional pain literally brought me to my knees, and I couldn't tell if I was drowning or burning from this sorrow. It was like the last 3 or 4 years since I had broken up with the woman above didn't even exist. It was like one day had passed, and now I was paying the price for not dealing with the emotional pain back then.

I was raised that with the exception of a close one dying, that a man does not cry. Well, here I was with a pillow soaked in tears, but the amazing thing was that while the emotional pain hurt so much, it felt absolutely beautiful... the sweetest pain in the world. NOTHING like the pain that I had been experiencing with CFS. And it felt so detoxifying, like my soul was finally releasing all that poison that I had been holding back for so long.

I spent over six months crying, and slowly I felt my joy and life returning. Some days were better than others, and there were days when I had all the physical and mental problems associated with CFS, but now I had found my inner voice, and it gave me the encouragement when I needed it, and led me down the right path even when there was nothing but darkness.

About four months into my weeping, I had the intense feeling that I needed to leave the country, and that feeling only got stronger and stronger over the next few days. So I got on the computer and bought a one-way ticket out of the country. My only criteria was the price of the ticket - I simply bought the cheapest international ticket that I could find. Turned out that it was for a country where I didn't even speak the local language.

I gave myself two months, then set out to get ready. I still had the symptoms of CFS, though milder than a year ago. But somehow I got energy that I didn't know still existed in me. During those two months I got my passport, saved and rounded up as much money as I could, and proceeded to get rid of just about everything that I had. The most important things I put in storage, everything else I sold or gave away.

I still don't know how I went from barely being able to walk just a few months prior, to getting all this done.

Then I left the country. The first couple of months I spent my time doing two things - walking or dealing with my core issues. Then one day I realized that I had finished dealing with the most pressing core issues. For over six months it felt that it would never end, and then one day it ended, just like that.

The very next day, I met a great girl, and though we were together for only two weeks and didn't speak the same language, it was absolutely wonderful - for the first time in years I felt like myself again. Even after she and I went our separate ways, and I was saddened that it didn't work between us, I had the time of my life. I was sleeping only 4 hours or so a day, but I didn't need sleep. I had energy, joy, and passion for life again. Whereas a year or two before I could barely read in my native tongue, now I was learning a new language. And where before I had become antisocial, now I was talking to everyone that I saw - even if I didn't understand 90% of what they said.

I spent over a month feeling absolutely alive.

Now, would I say that I am 100% better? No, but probably 80%.

I just got back to the states, and I felt some of the CFS symptoms return, which probably means that I have some more things to work on, and I will. But I firmly believe that it is all a matter of time before I get back to 100%, and from there it will be time to improve some more.

Ladies and gentlemen, here you are reading my experiences on your computer, and I have absolutely no idea where you are in your recovery from CFS. You may have just been diagnosed, or you may have had it for years. You may be close to full recovery, or you may feel that there is no point in going on any more.

Either way, I know what that feels like, and my heart goes out to you. There WILL be days when it feels like the battle isn't even worse fighting any more. God only knows I've experienced those days, when all you want is for the angel to take you and release you from your pain.

But know this - there is a solution. You may find your cure on your first try, your hundredth, or your thousandth. Whatever it is, however long it takes, never give up hope - ESPECIALLY when all hope is gone.

Trust me on this, after going through a battle like the one with CFS, after coming through the other side, the respect, admiration, and love that you have for yourself will overflow.

My love and joy to you all,

GY

[neil25]

Hi there,

Thanks for posting, I did read the majority of your post but found it difficult to concentrate with my cfs. what was the main thing which helped you recover? was it changing to a positive mind frame or was it a paticular treatement/medicine? im a bit confused as to what helped you after reading about it.

[alicewoolf]

Gy, what a great post. so inspiring to read. I think we all can find a way out of this hell in different ways. I've often thought of CFS as some sort of spiritual 'crisis' although the illness is so utterly physical in its manifestation. There is no one way for all of us as you've proved in your story. but there is hope as you and other people who have recovered have shown. and that's what we have to cling on to.

[niaholt]

Gy,
I think your are brilliant to have worked this out. What you have tried to do is the Gupta program in a kind of fashion...www.cfsrecovery.com I myself had a very similar emotional journey in my 1st marriage and believe it set the seeds for my later downfall. When you become so focused on the other person, you lose the "real" you. Today I woke after a grueling night and thought "how do I go on". You have just come onto this forum to give me encourgement. I am going to force myself out to the beach, and put my aging body into a bikini to soak up the sun here in OZ.

[gy1]

neil25 wrote:

Hi there,

Thanks for posting, I did read the majority of your post but found it difficult to concentrate with my cfs. what was the main thing which helped you recover? was it changing to a positive mind frame or was it a paticular treatement/medicine? im a bit confused as to what helped you after reading about it.

Hi Neil,

Unfortunately, there was and is no simple answer or solution. I personally believe that CFS is caused by being bombarded with too much bad stuff at one time - way more than your body, mind, or emotions can process at one time.

These may include emotional problems, psychological problem, physical problems, illnesses, too much stress, etc.

The body as an organism has a great ability to deal with just about any problem that doesn't kill it, provided that we give it the opportunity to do so. But by the time someone has full blown CFS, the system has been overloaded and in a way simply shuts down. There's just too much toxicity for it to deal with, and now we have the full manifestations of CFS, which will be different for each individual.

So to answer your question, I believe that supplements, positive attitude, and everything that I mentioned in my post played a positive role - I can't give credit to one single solution. I will say though that the underlying problem (unhealed negative emotions) was the real cause for me - but by the time that I was presented with the symptoms of the CFS, alot of other problems had piled up and I had to deal with them one at a time.

Like I mentioned earlier, the human body has a great ability to deal with and recover from just about anything. In fact, true healing ONLY comes from the body. We can only do things that help or hinder the process, but it is the body that possesses the ability to heal.

And its ability to do that depends on how much energy it has available to it. Someone with CFS has very little energy remaining to them, sometimes barely enough to get out of bed. Everything we do and experience has one of three effects:

1) Depletes Energy
2) Increases Energy
3) Has no effect on Energy (Zero-Sum)

Of the three categories above, very few fit within category number 3. So the key to recovering from something like CFS is to think of it in terms of strategy. Our main goal is to increase energy as much as possible. With enough energy, the body will naturally detoxify and heal.

So you have to look at everything in your life - your beliefs, your relationships, your job, your eating habits, your activities, your thoughts - EVERYTHING. Some things make you feel better, some make you feel worse. Very little has no effect.

Slowly begin to eliminate everything that is negative, and slowly add as many things as are positive.

Eventually you will have stored enough energy to deal with the root causes, and from there you will achieve a state of homeostasis and your body will naturally detoxify and heal.

Here's an example. Let's say you drink soda every day. Now at best, drinking soda would have no negative effects, but it has no positive effects. More realistically, it does have some negative effects - a sugar overload (or your body having to detox the artificial sweeteners), caffeine, etc.

On the other hand if you switch to water, that water will provide you with more energy since it keeps you hydrated and helps the detoxifying effect. You can also switch to green tea, which is full of antioxidants and other healing properties.

Now, I am by no means stating that soda is the cause - it isn't. However, increasing and storing enough energy to heal may require a hundred such small modifications - each one providing you with a little bit more health and energy.

Eventually, you will have stored enough energy to deal with the core issues, whether that may be emotional or physical in nature. After that, healing occurs.

The key though is to make the necessary changes in your life to store sufficient energy. It happens little by little, but one day you will have saved enough energy to heal.

Here's a list of a few examples of things which expend energy:

1) Poor eating or drinking habits
2) Drugs (recreational or in some cases medicinal - use caution and consult your doctor before discontuing any medications)
3) Anger (though if channeled properly, anger can provide you with fuel to change a negative situation into a positive)
4) Relationships (intimate or otherwise, bad relationships will expend enermous energy, good relationships will increase energy)
5) Feeling victimized
6) Depression
7) Stress
9) Smoking
10) Lack of exercise or too much exercise
11) Poor nutrition
12) Viral, bacterial, or fungal infections
11) Etc.

There are literally hundreds of things which expend your energy. Start with the low-hanging fruit and start eliminating anything which drains your energy. As you plug one whole from which your energy is draining, you will have conserved enough energy to plug another hole, etc.

Hope this makes sense and helps.


alicewoolf wrote:

Gy, what a great post. so inspiring to read. I think we all can find a way out of this hell in different ways. I've often thought of CFS as some sort of spiritual 'crisis' although the illness is so utterly physical in its manifestation. There is no one way for all of us as you've proved in your story. but there is hope as you and other people who have recovered have shown. and that's what we have to cling on to.

Hi Alice, thank you for the kind words.

I also agree with you, in that I also believe that CFS to some degree is a spiritual crisis, one that manifests itself physically. Not that I'm saying it's all in the head, because I definitely do not believe that it is. It's more where the spirit, mind, and body have become sickened, and healing must occur on all levels.

I firmly believe that there is a solution to everyone that is suffering from this, even if the root causes and solutions may differ. You simply have to throw enough things on the wall (possible solutions) and see what sticks.

niaholt wrote:

Gy,
I think your are brilliant to have worked this out. What you have tried to do is the Gupta program in a kind of fashion...www.cfsrecovery.com I myself had a very similar emotional journey in my 1st marriage and believe it set the seeds for my later downfall. When you become so focused on the other person, you lose the "real" you. Today I woke after a grueling night and thought "how do I go on". You have just come onto this forum to give me encourgement. I am going to force myself out to the beach, and put my aging body into a bikini to soak up the sun here in OZ.

Hi Nia,

Thank you for your compliments and words. I haven't tried the Gupta program, but from what I've read about it in this forum, I am considering purchasing it.

You are absolutely right, when you become too focused on the other person you often will lose yourself. While something like this is often a root cause, there are always other factors occurring at about the same time which causes the system to overload. Otherwise if it was only one problem, the body, mind, or spirit would have readily healed and recovered from it.

And I'm proud of you for forcing yourself to go to the beach - we should never allow ourselves to become victims of this illness.


Good luck to all of you,

GY

[alicewoolf]

GY. everything you write makes so much sense to me. What you say about removing the negative things gradually to help the body to heal itself is so true. It's exactly what I am doing at the moment. It's not easy to change your whole life, but maybe CFS is a real opportunity to live a better life. I'm hoping that when it's all over I'll look back and be grateful in some small way. I've always pushed myself (and punished myself to a certain extent) as I come from a family of achievers, and always taken my health for granted. CFS has taught me to slow down and look after myself. It can be hellish but I'm trying to see the positive side of being ill. For me it's the only way.
alice

[annie]

GY, I add my thanks to the others expressed here. So good of you to have taken the time and trouble to write your healing journey, a great inspiration. It is indeed a multi-layered illness, a challenge for us all to grow in wisdom and compassion.
When I was first diagnosed I remember feeling that in some ways I was reflecting the planet, exhausted, drained of resources. I had forgotten that but still believe it and maybe us healing ourselves in whatever way suits us, may go towards respecting and healing the planet too.