The Doctor

I have Chronic Fatigue Syndrome (CFS).

It's not something I tend to publicize, due to people's reactions, which more often than not vary from misunderstanding to suspicion, but recent events have conspired to lead me to speak openly about it for the first time. Thus, I hope you will permit me this moment of self absorption (and stick with me for the entirety of this post).

I have had CFS for 15 years now — almost half my life, and my entire adult life — following a virus I contracted in my final year of school. It has been considerably more severe since 2005, however, when I enjoyed a bout of glandular fever (a.k.a. 'mono', for the benefit of the Americanos).

ABOUT CFS
As the name suggests, CFS persists for an ongoing period (chronic), is accompanied by a cluster of symptoms (syndrome) and is characterized by — you guessed it — fatigue, among other things. However, according to the Centers for Disease Control and Prevention (CDC) it is "not the kind of fatigue patients experience after a particularly busy day or week, after a sleepless night or after a stressful event", but instead is "a severe, incapacitating fatigue that isn't improved by bed rest ... It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina."

The CDC lists eight primary defining symptoms.

• Cognitive dysfunction, including impaired memory or concentration
• Post-exertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
• Unrefreshing sleep
• Joint pain (without redness or swelling)
• Persistent muscle pain
• Headaches of a new type or severity
• Tender cervical or axillary lymph nodes
• Sore throat

Other common symptoms can often occur, including shortness of breath, weight loss or gain, increased sensitivity to temperature and brain fog (my personal favourite).

All I would add to that, from my own experience, is that it is like the feeling you get when you are coming down with the flu — rough throat, aching muscles and bones, difficulty sleeping, fatigue etc. — except that it lasts 24 hours a day, 7 days a week.

Perhaps worse than the physical fatigue though, is the cognitive disfunction, which has been much more noticeable since 2005. I used to be known among my friends for my absurdly sharp memory (just ask Rich Say). Nowadays, though, my short term memory is considerably impaired and I have tremendous difficulty concentrating. I feel at once like an 80 year old and an 8 year old.

THE TREATMENT
As each case is unique, treatments vary greatly in their method and success rate. To make matters more difficult, there is still skepticism and lack of knowledge in some parts of the medical community and many people go undiagnosed.

In spite of this, last year I was able to spend nine months in the care of one of Australia's leading chronic illness specialists. (I had to wait six months for the privilege, though). He theorized that I have an infective type of CFS, meaning that I got infected with a virus (think back to 1994 and then 2005) and it never left my body. However, we were not able to make any real progress in that time, and my treatment was cut short when we moved to America.

Leaving the good doctor's medical expertise was one of the main concerns with leaving home, but we decided to take the plunge and had hoped that a new environment might even be beneficial (something that other patients had reported). It seemed that this might be the case during our first couple of months here, however, following a prolonged period of over-activity my body decided that enough was enough and, come May, effectively closed for business.

Which brings us to today and perhaps some clue as to why I have written this obscenely long post.

Following counsel from the elders at Vintage 21 — particularly Taylor Roberts and Nate Williams, who I am greatly indebted to — we have decided to pursue treatment with a specialist here to see if we can crack this once and for all and restore my health. Following mountains of paperwork I was able to secure an appointment with the Carolina Center in mid-July.

And of course this is where everyone else comes in.

WHAT NEXT?
I would like to ask y'all to do one (or more) of these three things.

1. Understand
   For those interested in understanding more about CFS I have found there is a lot of helpful information here. Alternatively, you could talk to me. I don't ask for or expect any sympathy. But a little understanding goes a long way, and will often help to explain why I'm not at my desk from 8am-5pm, why I can't run as far or as fast as people older than me (despite looking younger and fitter), why I can't remember what I read or watched last night, and so on.


2. Pray
   That I would be healed and return to full health, so that I could give 100% to my wife, my work, my family and friends and so on. It has been a long time since I have been able to give 100% to anything.


3. Give
   Due to the nature of the American medical system, our lack of medical insurance, and our expectation that travel insurance may cover little of what lies ahead, we are seeking one off gifts to cover the costs of medical treatments. It is uncertain what we are in for, although so far we know that an initial consultation will be $443USD, further consultations will be $197USD and there is no way of knowing at this stage how much tests, treatments and medication will add up to. But, suffice to say, it will likely be in the thousands and that is more than we have on hand.

In addition, maybe just pat yourself on the back for reading this far. You will all be tested on this when I next see you.

Comments

[Whitney]

"It has been a long time since I have been able to give 100% to anything."

Or could it be that maybe your "100%" has just slid to a different portion of the Effort Scale (which I just made up for illustrative purposes)... just a thought. Either way I'm totally extending understanding and prayer in your direction. Thank you for sharing and trusting people with your experience with CFS. We're so glad to have you and Cathy in our church. Let us know how we can help as things go on. :)

[Amy J.]

word.

[Taylor]

I'm in this with you, man. Praying for you and excited to see the body of Christ support you during this time.

[Lachlan Payne]

Thanks y'all for your encouragement/support/prayers/gifts.

Will keep you updated in the coming months. Watch this space.