CHRONIC TONIC posts on Thursdays at 9 EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diarist is McMeier.
As a person with a chronic illness, I often find myself wondering what the future holds. In many ways, this isn't a question unique to those of us who are ailing. Most people at one time or another will ask themselves why it is they're doing what they're doing and wonder what the future will look like. This isn't quite the kind of question I'm pondering.
Before I address the question, though, I thought it would be a good idea to introduce myself. I've never written a diary before, nor do I have much of a comment history in my 5 years at dKos, so I'm not exactly known around here. This introduction creates a dilemma in itself, however, because I don't even know how to describe myself anymore. Briefly, I'll just say that I'm a lawyer by education living in a suburb of Portland, Oregon with Mrs. McMeier and my two woozles: a 12-year-old Sheltie and a 4-year-old Pembroke Welsh Corgi. They're all responsible for helping me keep the little bit of sanity I have left as I go through all of this. And what is "all of this," you ask?
I wish I knew.
For the past thirty years or so--since my teenage years--I've battled crippling fatigue at one time or another, usually combined with other symptoms: muscle aches, headache, sore throat, earache, nausea, and others I can't remember them all because they're really insignificant compared to the fatigue. Every time I've gone to doctors complaining of fatigue, they've ordered thyroid tests which have always come back "normal." Other times they've believed it was depression because the symptoms seemed to get better with antidepressants. But they would often also get worse while on the meds. Other times I would get better without them. I've tried them all and none of them do the trick. Is depression causing the fatigue or is fatigue causing the depression? No one has answers.
Then eight years ago they discovered I had sleep apnea. Finally… Something concrete that would explain everything. And it was treatable! But disappointment followed once again, as the treatment (CPAP) only helped marginally. It took care of the sleepiness I'd been experiencing around 4 in the afternoon every day, but not the ever-present physical and mental exhaustion. This circle of fatigue, hopeful diagnoses, non-helpful treatments, and inexplicable recoveries has been going on and off, on and off, on and off for as long as I can remember (I know it sounds a bit like bipolar disorder, but we've ruled that out as well).
The last onset was four years ago. I had a bad cold, maybe even a flu, and didn't recover for six months. When I did get better and didn't fall off again for some time, I thought I had shaken this thing for good. I also figured I was well enough to restart the solo law practice I'd closed a just few years earlier for this same reason. That was January of last year. By September, it had all come crashing down once again. The fatigue returned and only got worse in months to come.
That's where I find myself now. The practice is in mothballs and my daily routine consists of going from my bed to my chair in the family room and back, feeding the dogs, and running the occasional errand. And going to doctors… often: family practitioner, gastroenterologist, sleep doctor, psychiatric NP, psychologist, none of which have been able to come up with a good diagnosis. Next month I have appointments with an endocrinologist and a neuropsychiatrist. If neither of them can figure it out, I'll just self-diagnose it as Chronic Fatigue Syndrome, treat the symptoms as well as I can, and hope that I will once again get well enough to engage in some sort of productive activity.
This is where my question comes into play: where do we go from here? I deliberately say "we" because I know that whatever is going on with me affects my wife equally. And I also say "we" because I suspect some of you here have asked that question yourselves. It's a question with more than one facet.
The first is the practical aspect. I know that as long as I don't have a clear explanation for my condition, the practice of law will be impossible, at least in the form I left it. I don't want to once again be faced with letting down clients by having to withdraw from their cases. I'll have to figure out something to do that will give me the flexibility I'll need according to my condition. Does such an endeavor even exist? I'll try to address that when I'm better, if at all.
The more significant aspect of my question is grounded in the present. I sit here all day, spending excessive time watching both tubes (idiot- and inter-) and wondering what the point of all of this is. I'm not one who believes that we were placed on this planet for a particular purpose by some external force, and that we therefore have to accomplish that purpose to feel like our lives have some meaning. What I do feel is the need to accomplish something that carries meaning for myself and those around me, however small that something may be. I'm lucky enough to have a wonderful wife who can provide us both with our material needs, and who understands and supports me unconditionally. But I need to contribute, if not monetarily, in some other way that relieves her of the entire burden of running this household. I just don't know how. It's demoralizing to the point of creating a feedback that paralyzes me even more.
Is there a point to going on like this? Sure. All I have to do is remind myself that things could be worse: much, much worse. I then recognize all the good fortune that I've had and continue to have, and remember all the good people (and doggies) that surround me and care for me. My outlook cannot help but become just that little bit brighter. I remind myself that I'll do what I can when I can, and that I'll find satisfaction in knowing that I've done so. Tonight I'll cook dinner; that's more than I did yesterday…
And so we go on. Where do we go from here? We go wherever our conditions allow us to, and maybe just that little bit further. And we smile when we realize that today, this very instant, we've accomplished something we couldn't before. It doesn't matter how insignificant that something may seem to the world around us. We recognize what we've done and know that the next time an opportunity for a new challenge presents itself, we will seize it. That's meaningful, and it makes living with this condition just a little more bearable. Today. I'll think about tomorrow tomorrow.
So have you faced similar existential questions stemming from your chronic illness? Have you found answers?
I'll leave you with a pic of Duncan. How could you not smile when you see this face?