Tag Archives: medication

Holding Pattern

Things are marginally better, I think.

I actually had a nice Thanksgiving.  The outpatient program I used to be part of does a Thanksgiving thing every year, and I went to that with my landlady and her partner.  (My landlady works there.)  I almost didn’t go because I was afraid I’d start crying in the middle of it, but I went and didn’t cry.  Didn’t even want to.  Good food, and some of the leftovers are now in my fridge.  (Thank god, because my food stamps money is out, and the new money won’t come through until December 8.)

I’m looking forward to Christmas with my mom in Florida, so that’s useful.  She mentioned that my Christmas stocking that my grandmother knitted when I was born got lost when she moved, and she doesn’t have a stocking for herself or my stepfather either…so I’m knitting Christmas stockings.  She’s also having trouble finding most of her Christmas ornaments (may have also gotten lost in the move), so if I have time, I’m going to knit her some ornaments, too.  But she’s upset because a lot of the ornaments she’s missing are ones my sisters and I made as kids, and those can’t be replaced.

I’m still massively depressed.  I’m spending most of my time in bed, and a lot of it sleeping.  My sleep cycle is completely fucked up–I sleep for most of the day, get up between 4:00 and 8:00 PM, stay up until 2:00 or 3:00 AM, sleep some more, get up between noon and 3:00 PM…it’s screwed up.  I could probably get back into a semi-normal sleep pattern if I tried, especially if I used my light box, but honestly I just don’t care enough.  Every time I sleep, I have bad dreams and nightmares, but I don’t even really care.  I wake up in a tangle of sweaty sheets with my heart racing, but it’s still easier to be asleep than awake.

I’m not as intensely, imminently suicidal as I have been the last several weeks, but I still just don’t know how long I can keep going like this.  It’s no way to live.  I’ll do okay for food in December because my mother will pay for food for the two weeks I’m there, but I’ll come back to the same financial situation.  And the depression and anhedonia and utter purposelessness…that’ll all still be with me too.  I keep thinking I should ask my psychiatrist for antidepressants or some other drug something to make me okay, but then I remember there is no miracle drug.  I’ve already been on nearly every psych med in the book, and they don’t help.  But it feels like the only option available to me, since support and therapy are basically inaccessible to me.  There’s some part of me that still wants to believe that there’s some solution, even though I know there’s not.

I can keep going for a while, but a life like this is not sustainable.  No one was meant to live like this.

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I’m Still Here

For now, at least.  I’m just tired of talking.  It doesn’t seem to get me anywhere; it just leaves me feeling more alone and hopeless.

Everyone wants to tell me I should live, and honestly, I just can’t take hearing it anymore.  That probably makes me an asshole, but I guess that doesn’t really matter anymore.  Maybe you’re seeing who I really am now, when I can’t keep up appearances anymore.  Maybe you’ll hate me.  Maybe it’ll make you understand why I can’t live.

I’m tired of people trying to fix me and solve my problems.  I’m pretty damn smart, okay?  And I’m pretty damn resourceful.  If there were resources to be found, solutions to be invented, I would’ve figured them out already.  I’m tired of being polite when people suggest the same things over and over.  Yes, I’m on disability and food stamps and Medicare and Medicaid, I’ve applied for energy assistance, I’m on the waiting list for housing, I’ve been to the food banks, I’ve tried the buses, I can’t afford paratransit.  I’ve tried forums and self-help books and support groups and CBT and DBT and EMDR and psychoanalysis and ECT and the Department of Mental Health and Community-Based Flexible Support.  I’ve been to respite, the ER, more psych units than I can count, two trauma units.  I’ve gone to church and prayed and mediated and done yoga and changed my diet.  I’ve been on antidepressants, anxiolytics, mood stabilizers, stimulants, and anti-psychotics.  I’ve taken 5-ASA’s and steroids and chemo and immunosuppressants and biologics.  I’ve consulted psychiatrists and chiropractors and reiki masters and neurosurgeons and physical therapists and acupuncturists and gastroenterologists.

Nothing helps enough to make my life survivable.

You can’t fix me because I’m too many problems to solve.  It’s depression and complex PTSD and DID.  It’s ulcerative colitis and hearing loss and brain surgery and mobility impairment.  It’s disability and isolation and poverty.

And you can’t solve just one because they’re just a big knotted mess.  You can’t untangle one thread from another; they’re all felted together now, and there’s no extricating them.  And nobody can fix the whole big mess.  Not even me.  I did everything I was supposed to do.  I tried so hard for so long, and things just get worse.  Now, I just can’t try anymore.

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Musings on Remission

The way I see it, I’m dealing with two chronic illnesses: the ulcerative colitis and the trauma stuff.  (I’ve decided “trauma stuff” is its name because that’s simpler than C-PTSD/DID/depression/anxiety/ED, because while all of those are technically different disorders, I think they’re all the same thing–all trauma stuff.)

It’s interesting to consider the treatment approach for the two illnesses.  In particular, I’m thinking about the approach to meds.  Initially, it’s similar: hit it hard and fast to get the symptoms under control.  In the world of UC, the doctors talk about achieving remission.  Psychiatrists never use that word, and I’m starting to wish they would.  It’s a word full of realistic hope.  It acknowledges that the illness is chronic and will flare up and require more aggressive treatment at times, but it also tells you that there is hope that you will have periods of normality, periods when you function just as well as people who aren’t ill.  Hope, you see?

And from the beginning, my gastroenterologist talked about reducing meds drastically once I achieve remission.  We’re not there yet; we’re still in the period of having to add more drugs, often potentially toxic ones, to get to a state of remission.  But he already has a plan for decreasing once I’m in remission–the order I’ll go off the drugs, the schedule for reducing doses, everything.

Until the last 2 years, I’d never found a psychiatrist who would even consider taking me off psych meds, no matter how stable I was.  Psychiatrists, in my experience, don’t believe in remission.  They’re taught–and then teach their patients–that if a patient is stable on meds, they’ll have to stay on those meds the rest of their life.  Reducing or going off medications is treated like it’s the equivalent of jumping off the roof–it might not kill you, but it’s not going to end well.

I don’t understand the difference in approach.  My gastroenterologist sees meds as a tool to achieve remission, not a long-term necessity.  Once you’ve hammered in the nail, there’s no point in continuing to bang on it.  I may have to stay on some meds long-term, but his goal is to reduce that as much as possible because he knows the drugs can be toxic, and even if I’m not having terrible side effects, they’re not a natural part of my system and shouldn’t be there unless they’re absolutely necessary.

I’m lucky to have a psychiatrist now who views psych meds in a similar way, but he’s an exception.  I can’t even count the number of psychiatrists I’ve seen in my life–probably upward of 30–and he’s the first one who’s told me I don’t have to stay on the meds.  He’s helping me sloooooooowwwwwwly reduce my doses, and he trusts me enough to let me make minor changes to my doses between meetings with him.  I just tell him, “I decreased the prazosin because I haven’t been having nightmares,” or whatever, and he doesn’t freak out on me.

But for most of the time I’ve been on psych meds (which is most of my life, from age 5 on, with a few unmedicated stretches) I’ve been told that disasters will happen if I go off or even reduce my meds.  I’ve been involuntarily committed for telling a psychiatrist I’d do it on my own if he wouldn’t help me.  I’ve been told that I have no hope for any semblance of a normal life unless I keep taking more and more meds at ever-increasing doses.

But guess what?  Those psychiatrists are wrong.  I’ve been decreasing my meds successfully, and I’m beginning to build a life that doesn’t center around my illnesses.  I think I’m close to remission.

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