Status Update (F06.4)…

I am tired. Perpetually and existentially.

The last eight years have simply pulled me down further than I could have thought possible. I slowly lost my sense of self beyond the illness; more and more I felt stripped of my dignity (which will happen when you literally shit the bed enough times). While there is certainly a degree of depression, what is more intolerable is the relentless anxiety, the constant worry over the mast cell triggers that do indeed lie around every corner. For the past eight years I have been beset by an unabating anxiety over the very real realities of my specific chronic illnesses, the truth that almost everything in the world is, in fact, a danger to me…

But over the past few months the tenor of my anxiety has shifted to something different, something far more severe, a presence now detached from the reality of my condition. If you saw me at Market in Houston you may have noticed that I was profoundly on edge; to be honest I was barely holding on, only just maintaining some semblance of keeping it together. And things have only gotten worse since then, exponentially so. In short I have become a complete basket case.

Finally a couple of weeks ago everything just snapped; I was no longer consumed by my illness, but instead the anxiety itself. The depression had abated; I think that was more than anything a byproduct of fighting the expanding anxiety. On the other hand I simply could not stop shaking, vibrating, trembling in a state of perpetual panic. The smallest thing, or even nothing, would send me into tears. It was not that I was sad; my body was simply in a state of overload. The problem ceased being the fact of being in the world; the problem was simply existing itself.

So I now have a psychiatrist, a good one, or at least so it seems. It requires a bit of travel, but I have given up on the local mental health options.

(No I will not embrace my illness and come to terms with it. No I will not accept the physical torment, the pain, the bleeding, the system failures. And no, focusing on the positives in my life doesn’t change and damn thing about living in my skin – that’s actually the worst advice you can give someone with severe chronic illness).

And now I have a diagnosis, one that actually addresses the realities of my life rather than an idealization of what it might be: F06.4 (anxiety disorder caused by medical illness). So instead of trying to get me to embrace my body, we are working on ways to mitigate the anxiety until such a time that I can find that right congregation of doctors across the country who can actually treat my dysfunctional body (yet another thing that has revealed itself to be impossible where I live).

Right now we are focusing on medication, physiologically cutting through the anxiety and panic in order to let me live, and hopefully to stop wishing I were dead (which is very different from being suicidal). Finding treatment for my compound-complex chronic illnesses is not going to happen soon; in fact there is nothing more to be done in the near-term. But what we can do is adjust my neurochemistry, pull me out of the unrelenting horror of permanent panic. And with that perhaps I can re-find a bit of myself, become a tolerable person, and perhaps even rejoin my life.

And with any luck, by the time QuiltCon comes, I’ll be ready to tackle the world again and take the quilt universe by storm once again (it’s going to be a busy, and exciting QuiltCon for me, but more on that in the new year). Until then we’re going to keep increasing the dosages (Aripiprazole and Clonazepam) until I begin to once more feel human…


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6 Responses to Status Update (F06.4)…

  1. 1
    Mona Keegan says:

    Sending prayers for you to find the help you need. So very sorry that this is your state now. Keep after the right help. Your strength is in you not giving up. You continue to amaze us all.

  2. 2
    candy says:

    Hopefully this person you have found will be the start of the right team that you will need. Anyone with a chronic illness needs a whole team & the brain is a very powerful organ along with the gut. All the best for you Thomas.

  3. 3
    Lindaroo says:

    That’s a remarkable understanding, about depression v. anxiety, and medically induced anxiety, and treating the anxiety, all with your chronic illness always in play. May 2017 be a better year for you.

  4. 4
    Elise says:

    Thomas. How much has 2016 sucked. Here’s to a much better 2017. Peace be with you. ❤️

  5. 5
    Megan Byrne says:

    OMG! I feel so sad for you and wish there was something not cliche that I could say to releave you of some of the anger and frustration you feel over the hand you’ve been dealt. I follow your blog and I love the way you see things and the way you try to convey the world as you see it. I try to find the meaning in all things as you do. Maybe that’s why you write, if only to help me make sense of things. Thank you for that.

  6. 6
    Patty says:

    A family member has had fantastic results with klonopin as part of his chemical treatment for very severe anxiety which he suffered with for years until getting a new psychiatrist who changed meds and helped almost overnight!!!
    Hope it’s working for you.

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