Notes to Anyone Who Stumbles Across This Blog

As happy as I am that you have stumbled onto my part time blog, I need to say that this exists for my own personal edification. Not that I'm anti-social or anything like that (although I am). I'll be happy if, over the weeks/months, you find some things here that can help you in your quest for wellness, but it's not my primary goal. That goal is to get certain thoughts on "paper" so that they exist - proving that what has happened, has in fact happened. Again, it's not all in my head - recurring theme here. Thanks for eaves-dropping. You're welcome to give feedback as to any of the thousand or so ways I could improve this blog. If I don't get around to it, don't take it personally, I've got CFIDS - I don't complete anything that those around me need.

Note the Times of Most of the Posts So Far

It says something about the habits of PWC's that most of my thinking occurs after midnight. Perhaps I should work third shift, when my adrenals and cortisol levels are at their highest. I take my evening meds - which include a tranquilizer (to slow down the overactive CNS) and a sleeping pill - and it takes me from the hyper mode which I need during the day to have enough energy to do anything, to a more normal mode, where my mind is not being assaulted by the TV, the lights in the other room, the noises, that smells - and a long list of other sensitivities. Let's just say that if there were a used Central Nervous System trade in shop, I'd have been there 8 years ago, and likely would lease a new one - top of the line/convertible - every year. Think I'd upgrade to leather as well.

In Your Head

This is a phrase I have heard once too often. One of my own family members called me a few years ago and while expressing enough concern to risk my getting angry with them, told me that they felt strongly enough about their opinion (based on what research I can only imagine) - that they had to tell me that they felt strongly that all of this was "all in my head" - I created it all. I wish I was so creative - this blog would be much better if I was. Let's face it, I've created two things in my lifetime - both my daughters - and when I did that I established a standard that was impossible to beat - since they are perfect, both of them - so I guess I stopped trying to create things.

Trouble is, in my talking with other PWC's, I think we spend a fair amount of time honestly (too honestly) evaluating whether all of this is in fact in our heads. I also understand that chronic fatigue is both a misnomer and an over generalization. It can be used to cover all sorts of things, and in today's rushed society, where we need instant gratification, people don't take the time to come to a clinical diagnosis - as I said, mine took over two years. My Rheumatologist didn't believe in the existance of CFIDS, believing that it was the adolescent manifestation of another immune/rheumatological disorder that had not matured to the point where it showed on clinical tests - trouble is, that never happened and it's 8 years later.

I am an easy going guy. I love my dog, my kids, my wife and pretty much anybody in my life - but don't tell me CFIDS is "all in my head" - you may not like the reaction you get. A bit touchy there...

Friday Wasn't Black After All

Kids all came over today and we had Thanksgiving because we were at the hospital yesterday. It was great. Neither of us had the energy, as my wife has been sick, but the girls did Thanksgiving dinner, with ALL the trimmings from top to bottom. All I did was carve the meat and say grace. It lifted the spirits having them here, as so often happens with this condition. You don't ever feel like you have the energy to do anything. Sometimes you push yourself and you just crash. Thank God, today was one of those days you push and you're so glad you did. Today was one of those days when having children was DEFINITELY a good idea...

Black Friday

No shopping today. Actually, never did that even before I got sick. Up at 5:00 AM? Not me - unless I haven't been to sleep yet. Insomnia is usually not that bad though. In bed between 1-2. Those late night hours, after I've taken my sleep meds, sometimes almost feel like normal - so I sacrifice sleep knowing that in the morning, just like Bill Murray in Groundhog Day, it will be the deja vu all over again. I've spoken with other PWC's and this is not uncommon - the sacrifice of sleep for some time where you feel normal - almost. Happy shopping all. Hope you've got both the money and the energy.

CFIDS Society/Research

Is it me or is this group struggling for identity? I receive the newsletter, support the organization, and even link to it here, until they tell me that's not allowed without their permission of course. Realize CFIDS is not a killer, it's not AIDS/HIV, but we haven't gotten anything done in quite some time. Can't even get the name changed. Again, I do not mean to offend, if my one reader turns out to be the chairperson of CFIDS.org. Just a frustrated observation.

I am not a Victim (if I remember correctly!)

The previous post may have you think that I am a victim or picture myself that way. On the contrary, the disease has shaped my character beyond what would have happened without it. Do I wish I was rid of it - of course, any one would. Would I trade it - tough question - I don't like giving up 8 years of my life to it, but I have learned much and as the video talks about, the internal struggle is the crux of the matter. I personally believe God sees, and has allowed me to experience this for good. That one took a while to come to - the intellectual knowledge is easy, but really believing it, that took some time. I would not have the compassion I have today were it not for CFIDS. At the risk of gettng preachy, everything has a silver lining. Damn hard to find though.

What's it like? Find out

The Holiday Spirit

I'm as much into holidays as the next guy. At least I used to be. Doesn't work that way anymore it seems. I've learned over the years, and partially because if CFIDS, that how I feel is not the most important thing in the world. Believe it or not ladies, that's a big lesson for us males to absorb. But I have to admit, there are times when how I feel just can't be ignored. Today happens to be one of those times. We postponed our celebration until tomorrow, as our kids are grown and have other families to celebrate with as well. So we'll do ours tomorrow, and I will hope for a better day. My wife has been sick, and when I'm the one with the most energy around, we're all in trouble. I hope the dog gets fed...Happy Thanksgiving if anyone's reading this.

First Steps

Once I realized it was not Polymyositis - which seemed to be months before my Rheumatologist did, I settled in to learn about this wonderful thing that had taken my life hostage. A word about the net - everything is out there, all equally credible - and some of it pure trash. Initial treatments were aimed only at the symptoms of the disease - try to give me more energy, less pain in my joints and muscles, reduce the neurological mess my central nervous system had become. Some helped, but of course had no bearing whatsoever on the root causes of my condition - please note very carefully I said CAUSES - as CFS is a multiplicity of conditions. And, if I have learned anything in the years and dollars wasted looking for the right snake oil it is this - if you have 5 problems that together produce CFIDS, any treatment that addresses between 1-4 will ultimately do nothing for your overall condition. Comprehensive understanding and treatment is a necessity - and very few people have enough knowledge to even attempt this. But, don't despair, I'll keep updating, there is some good news although the jury is still definitely out.

What's in a Name?

Chronic Fatigue Syndrome. I've never seen someone credited with naming this disease. If I had, he'd be dead now - and many, if not most CFIDS patients would probably agree. Hell, if fatigue was even in the top 5 symptoms for me I could accept this, but it usually isn't. The whole concept of the name is so BOGUS - it robs the condition of it's legitimacy, and demeans the character of those who have it in the eyes of others. Between doctors telling you your crazy and friends and family who think you just lack the character to pull yourself up by the boot straps, you can get REALLY mad during this phase of the disease - but never fear, you do grow tired of the anger. After you've sent out 40,000 mailers letting everyone you've ever met know that CFS is now called Myalgic Encephalomyelitis (ME) - as it is called in the UK. The disease isn't bad enough - we've got to suffer from the friggin name.

Parade of Physician's

Now it was time to start to see the specialists - as CFIDS, which nobody thought I had yet - is a disease diagnosed by exclusion - you eliminate all other possible causes and there at the bottom of the pile if good ole Chronic Fatigue. My initial and tentative diagnosis was Polymyositis. As my wife and I had a friend who had battled this for years, and has since died from it - we weren't excited at all. So the Rheumatologists came first. 3 different ones, none of whom agreed and all of whom threw drugs at me that didn't help in the slightest. The doctor I finally ended up with did not believe in CFIDS - which is a common problem for those of us blessed with this disorder. So much fun trying to convince your doctor that a) you're sick when all tests come back normal, and b) the disorder you've got actually does exist.
Spent over a year with the Rheumatologist looking under my finger nails to no avail. Then started the revolving door of doctors. Immunologists, Gastroenterologists, Opthamologists (yup), Neurologists (2), Pain specialists, Psychologists, Psychiatrists, Accupuncturinsts, Chinese Medical Practitioners - and the quacks who advertise they can cure anything as long as your willing to feed them money introveniously ($20 minimum) - and the really stupid thing is that these guys have WAITING LISTS months long to get in to see them, I think I at least covered the major groups here. It is NOT comprehensive.

How it all began - I think...

Following a particularly stressful few years at work during which time I had been prescribed both Prozac and Xanax, I had what was probably the trigger event of my CFIDS - shingles. Understand this is something I wouldn't wish on my worst enemy - hopefully, neither would you or you're a sick you-know-what. It is possible that stopping the Prozac triggered the CFIDS outbreak as my symptoms started almost immediately upon stopping the SSRI - which of course, changes the amounts of Seratonin in the brain, which some research points to as a possible trigger or even marker for the disease. More than likely it was the viral outbreak of shingles shortly before this though. Life was moving into a whole new league. My parents passed the lifeview on to me that you'd better enjoy yourself while you were young because sooner of later life was going to pick you up and beat you senseless, and that seemed to be starting to happen.

The questions, the anger, the lack of understanding - WHY, GOD? I was 44.

History 101 - Don't worry, just the facts ma'am...

I am a male, 52 years old - (too old for blogging no doubt!) - and have had CFIDS for 8 years. The diagnosis process was almost a full 2 years and, as anyone who knows about this insidious problem understands, you walk out of many doctor's offices where they find absolutely nothing wrong with you. Important note here: My wife, God bless her, immediately got out on the net and gathered weeks worth of the latest information on this disease (yes it's a disease! - it doesn't kill, just robs life) - and she annotated and cross referenced it to present to our family GP. I am twice blessed - not only did my wife make every effort to understand what was behind my condition, but my family doctor of 15 years, and a personal friend did as well. I work with Physician's in my job every day, and I can't tell you how rare this is. Having both - while now I look at it as absolutely essential, then I just saw it as a blessing.