At the End of My Cope

Posted by kayholt on August 6, 2013 in health, work |

This is hard for me to write. I’m sick, but I don’t look sick. Most of my symptoms are cognitive. Failures of concentration, recall, and communication. On good days, I can force out a few emails. Navigate simple conversations. read a bit. On bad days, my hands shake too much to type or control a mouse. My attention span isn’t long enough to bridge a commercial break. I lose time. I can barely sleep, but when I do, it’s restlessly. Yet, I can’t always wake up without help.

Then there’s all the weird sensory shit. I try to keep myself covered up most of the time because I can’t stand the movement of air across my skin. Every touch – even the absence of touch – is a torment of signal noise. Numbness, tingles, chills, the tickling of imaginary hairs. I can’t trust that what I feel is real.

Because I have PTSD. Apparently.

This diagnosis is new, but it probably isn’t news to anyone who knows me well. Given my history… Well. I’ll just say that life has been too interesting for my own good.

When the workload at my dayjob began to snowball, I asked for help dealing with it. I was told there would be no help for me. I worked so much that I developed carpal tunnel syndrome. I asked for help and accommodation, and was told that, instead of lightening my load, I was expected to take on more. Work during my commutes. Take work home. Type more, not less.

It seemed like I had to choose between protecting my health and keeping my job. I felt trapped. Something had to give, and unfortunately, my mind said, “I QUIT!”

Medical leave started Monday. I have three months to recover from this breakdown. I don’t know if that’s long enough, but I have good meds, a good therapist, and good friends to help me.

Meanwhile, it took me four hours to write this short post. If you comment or email and don’t hear back from me soon, please don’t feel slighted. My mind moves in slow motion, right now. I can’t even keep up with the outpouring of support.

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  • Oh, güerita, I wish it could all be made better for you in an instant. Time and rest can work miracles, though. Hang in there.

  • JayLene Hommel says:

    I am glad for the update but so sorry that this is happening to you. I already knew of some of the problems you were having with shaking hands, increasing work stress and was worried. (I’m a mother, therefore I worry)

    Heard your voice for the first time yesterday and I want to thank LJ for letting me know that today is your birthday. So HAPPY BIRTHDAY! Could this time off be sort of a birthday present? A little R&R is never bad
    You have strength and determination which has brought you this far. It also sounds as if you like and trust the professionals helping you. Add close friends and family and your extended internet community and I suspect you will come through this even stronger. <3 Moogie

  • arelhy says:

    My thoughts and prayers are with you, Bart and Baz!
    For a speedy recovery with the help and support that surrounds you!

  • You may not want to read this till tomorrow, but I was afraid if I didn’t write it today, I’d forget.

    I’m sure there will now be a ton of people who read this entry who all want to give you health advice, and I’d love to say I’m not one of them, but it would be a lie. I finally decided that if I didn’t write it and found out later it was relevant, I’d feel terrible. But don’t feel you have to reply–after all, they say that free advice is probably worth what you paid for it. *g*

    Your day job sounds awful and your symptoms sound worse. *Hugs* I wish I could do something to help, but having been in similar situations as a computer geek, I know there really isn’t anything. But… having been in that situation as a computer geek (it’s amazing what stress can do to you when your department of five that should be six suddenly becomes a department of three, and then one of them breaks an arm), I know there are a number of other things that can account for most or all of your symptoms–and it’s entirely possible to have two or three of them at once. And women in particular are often misdiagnosed as simply having stress, because women are failed men and our wombs wander, y’know.

    My anxiety attacks turned out to have been a thyroid condition. The inability to concentrate, inability to write, and overwhelming fatigue were all symptoms, along with a handful of others. It took me about eighteen months to be properly diagnosed, because doctors’ understanding of thyroid hormone numbers has changed radically in very recent years, and because my doctor told me the primary symptoms were all a result of being overweight and retaining water. Because fat women don’t deserve health care until they lose weight or something. (Yes, the guy was an ass.) If your thyroid hormone is low, having that corrected makes a night and day kind of difference, even to someone like me who has several other things wrong with her.

    Gluten intolerance can cover each and every one of the symptoms you listed. Unless you know someone for whom avoiding gluten has become of critical health importance lately, you’ll probably roll your eyes at this, because it’s become very trendy to talk about eating gluten-free being healthier. I don’t think I would ever have stumbled across it if I hadn’t already begun to worry that I had some undiagnosed autoimmune disease. Dropping gluten is a huge pain in the butt, and I would never recommend it to anyone for whom the idea is just to magically “be healthier” somehow. But if you do a quick Google search on gluten-free diet or gluten intolerance/gluten sensitivity, you should get a number of results that will give you symptom lists. Like I said, each and every one of the symptoms you named is on that list. Along with others. Most people don’t have all of them. I had two thirds of the list. After a month without gluten (down to the level of reading the label on the soy sauce bottle and seeking out gluten-free soy sauce), I lost all of them.

    If you’re still with me, be aware that gluten intolerance is not the same as celiac disease or as a wheat allergy. Lots and lots of doctors will tell you that there’s no such thing as gluten intolerance and send you to get tested for celiac disease. Twenty years from now, I think this will be different, but for right now, what you need to know is that celiac disease is very, very specific. Gluten intolerance doesn’t have a cut-and-dried test. Space but doctors perfectly well understand the concept of some substance simply being “not tolerated.” They just don’t always think to apply it across the board. But, as an example, I was just placed an a medication that almost put me in the emergency room. I’m not actually allergic to it–that would have been an entirely different set of symptoms. But it could have killed me anyway. And what they put in my chart beside that medication is “not tolerated.” That’s what gluten for some of us, and while I probably could not have gotten a doctor to recommend I try going off of gluten, when I’m firm about telling them that I am gluten intolerant, they do behave accordingly. If you decide to test for yourself, you can usually get them to acknowledge it going forward.

    And if you decide to do that kind of test, feel free to e-mail me if you want some specific suggestions. You really need to do it for a month to be sure. I lived with horrible symptoms for pretty close to twenty years because when we were checking for a wheat allergy when I was a teenager, the doctors only had me do it for ten days, and nobody warned me about things like soy sauce and artificial crabmeat. *g*

    Okay, last bit of layman’s nosy medical advice. The demon diagnosis applied to a lot of us who have the kinds of symptoms you’re describing is fibromyalgia. Just because it’s PTSD does not mean it isn’t also fibromyalgia. But like any diagnosis of exclusion, the symptoms overlap to a very high accident with several other things. Including lupus and Lyme disease. Once again, all of the symptoms you are describing can be caused by fibromyalgia. Which doesn’t mean that’s what’s actually causing them. But it’s worth keeping in the back of your mind. One of the fights I fight with the specialist I see for fibromyalgia on a regular basis is the fact that he sees shooting pains, numbness, and tingling as neurological and believes a neurologist should intervene. But if you read the forums where fibromyalgia patients talk to each other, you’ll find that many or most of us have what’s called peripheral neuropathy. Which basically means the pain/numbness/tingling/bugs-on-skin feeling is generated by nerves from locations that aren’t the central nervous system. My specialist may not think it’s his problem, but it does seem to be part of the symptom complex around fibromyalgia.

    As an added bonus, most of us think of pain as being the primary symptom of fibromyalgia. Pain radiating out from specific points that seems to spread over your whole body from your skin inward. It took me a long time to admit that I have fibromyalgia, because I just didn’t think I hurt enough for it. But there are lots of other symptoms, and everybody’s pain tolerance is different.

    I’m glad to hear you’ve got the medical leave, at least. I hope your doctors are much more on the ball than mine were and that you’ve got a perfectly sensible diagnosis that responds well to simply getting out of a toxic work situation for a few months. Like I said, former computer geek here–one place I worked, things got so bad that my coworkers and I ended up at a bar after work trading war stories about our previous close encounters with stress-related medical, and pretty much all of us had landed ourselves either in mental health care or in the hospital due to work stress at some point. I don’t want to downplay the fact that it really could just be stress, because stress breaks people. But if your doctor hasn’t looked at some of these other possibilities, you may want to make a list and take it with you, so you can ask about them.

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