Saturday, August 29, 2009
After the massage, it was the first time this week that I actually felt at home and alright in my body. Not that I felt fabulous or anything. But I'd been really nervous about whether or not I could even handle being in the city, and there I was walking (slowly) across town doing fine. I had an appointment with my therapist - my psychotherapist, that is - and I shared with her my concerns about being on two drugs that inhibit norepinephrine reuptake, among other things. She never has a whole lot of input, unless something really dramatic is going on. She draws me out with very few words and before I know it I'm going on and on about things I didn't even know were bothering me. That's because she's good.
Friday I had to run many errands, but fortunately Jonathan was off of work so he accompanied me. I did fine, just got very tired. I started off with a visit to my chiropractor, which helped of course. For reasons unknown my neck was unusually tight and we had trouble getting it adjusted, but we did get some release out of it. Maybe my stretching will help and we'll do better next week. In the afternoon I took a nap - I couldn't help it. Hours in the city left me completely exhausted. But I made myself get up, lest I sleep for too long and not be able to sleep at bedtime. In the evening Jonathan and I took a nice walk, even if it was in the rain, and then I stretched for a good 45 minutes. It's probably the best day I've had yet.
Today, it's still early so I'm not sure yet. The changing weather never helps, and I'm feeling a variety of trembles and headaches that could be the new medication or could be something else. I'm a bit achy, but nothing too serious I don't think. But any way about it, it's significantly better than how the week began, laying in bed writing in pain.
Here's hoping that my hard work pays off, and that the upward trend continues.
Thursday, August 27, 2009
I do my best to give him as much information as possible, but the truth is that I'm still learning to speak his language. I can talk for two hours, and I won't get through to him nearly as much as one good internet link. I guess maybe it's harder for him to hear it from me, because it adds such an emotional element - he sees me in pain and just wants to make it better, and of course he can't, and then he just gets too frustrated to cope. But I think we'll be alright, as long as we both keep trying. We'll learn to deal with this.
Last night Jonathan and I got out for a nice walk. It was great - I was stircrazy from being stuck in the house all day. It felt so good to be able to move more than a few steps; we walked pretty far with minimal pain on my part. It was a pleasant evening, and we discussed the possibility of moving to New Orleans in a couple of years. A very light rain was falling, keeping us cool. We got home and I stretched for a good half hour or so. It's the first time I've been able to stretch this week because of the abdominal cramps I've been having, so I was really satisfied and felt like I was finally making progress.
Later, he wanted to go out for the third cigarette of the evening. I hate it when he goes out to smoke, for several reasons. 1) I hate that he smokes. 2) I think he smokes way more than he needs to for whatever addiction he may have. 3) I always think something terrible is going to happen to him when he's out there, like he's going to get hit by a car or shot or something. This third one is pretty irrational, but I've had a life that's taught me that crazy nonsensical things can happen at any time and a brain chemistry that just fuels the fire. So I can't help thinking it, but I can usually keep my mouth shut and keep it from bothering me too much.
Well, right now I've just started a drug that's further addling that brain chemistry. So when at midnight he went to leave me yet again, I flipped out. At first he thought I was just giving him hell, but when I started crying he figured it out. He got real frustrated. Keep a man from his cigarette for reasons he doesn't understand, and he's bound to. So I tried to explain it to him as best I could.
And then I made my big mistake. I told him about the hallucinations.
They're just small ones. I've been having them for approximately forever, so to me they're just not that big a deal. I know they're not real. I know they're just a product of this wonky brain chemistry. It's only even notable because they've been gone for several years, and now with this new drug they're back. But it's really not surprising.
I just see little things, or hear little things. What do I see? Animals, mostly. Or bugs. A lot of cats. When I was young, late teens, they were much more elaborate and vivid, and I could look right at them and they didn't go away. Even then though I knew they weren't real. I hear fairly normal sounds really - phones ringing or the computer making a computer noise, only the phone isn't ringing and the computer's closed. Every now and then I hear someone speak, but I could count those instances on my fingers, and we're talking over a span of almost fifteen years. I know what you're thinking, but I never did drugs, not the fun kind. Nope, not even once. Apparently I didn't need to; my brain did these things on its own. Of course there were years of chronic insomnia, which I think helped me along. That by itself can make you hallucinate, and I had real chemical problems on top of it.
So anyway, I told him about the one small visual and multiple small auditory hallucinations that I'd had throughout Tuesday and Wednesday. And he sort of freaked out. I don't exactly understand why that upsets him more than the days when I can't really walk, or when I can't bathe myself. Maybe he thinks I'm really crazy. I feel like he hates me or is disgusted with me. Being the me that I am, this morning I'm half convinced that he's going to postpone the wedding or call it off or leave me or throw me out or god knows what.
This morning after he went to work I emailed him some info on how common it is for anti-depressants to cause hallucination. I slept terribly, which I want to blame on taking two drugs that inhibit norepinephrine reuptake, but I have to remember that this happened several times last week too - before I started the new pill.
I can't believe that Monday I have to go back to my superintense, high pressure job, and try to deal with all of this and that at the same time. I feel like trying to do it all is going to make me have a nervous breakdown. And of course, it wouldn't be the first time.
Wednesday, August 26, 2009
Serzone is not an SSRI. Instead it is a Serotonin antagonist. This isn't what it sounds like. Basically neurotransmitters are usually sort of cycled through the brain - they're spit out into there, and then they're picked back up. SSRIs, as the name implies, are "reuptake inhibitors" - they stop the brain from picking the serotonin back up out of the brain so quickly. Serotonin antagonists also do this, but at different receptors or in a different way. So, same overall effect but different mechanism. And, as it seems, different side effects. Other serotonin antagonists include trazodone and its brand name, Desyrel.
Regarding my other current medication, Wellbutrin, seems that it is a norepinephrine and dopamine reuptake inhibitor. I'm not sure of the wisdom of being on two drugs that both inhibit the reuptake of norepinephrine, particularly since I've been known to be prone to panic attacks. One doctor thought it'd be just fine, the other thought it'd probably be fine. So... we'll see, I guess? If it seems like I'm getting way more panicky, someone mention it maybe?
Have I mentioned that I hate being on drugs? Yeah. Bigtime.
May 20, 2004
Bristol-Myers Squibb announced today that it is pulling its antidepressant Serzone (nefazodone) from the U.S. market. The controversial antidepressant has already been banned from sale in many countries because of links to cases of liver failure and injury, and at least 20 deaths. The company reportedly notified wholesalers that distribution of Serzone would end June 14. They insist that the medication is being pulled because of declining sales, rather than concerns about its safety.
Several lawsuits are pending in U.S. courts against both Bristol-Myers Squibb and the U.S. Food and Drug Administration (FDA). Nefazodone will remain available as a generic medication, and some attorneys report that they will continue their suits against the FDA until the drug is banned from the market entirely.
While liver failure is not a common side effect of the medication, there is no way to predict which patients will suffer this potentially-fatal side effect. This unpredictability is what led Canada to ban the medication last year. Nefazadone appears to be the only antidepressant currently on the market that can cause liver failure.Uh, yeah. I took that stuff for like three and a half years! Ugh. See, I know how ineffective the FDA is, and things like this are why it's so damn scary.
So now I'm trying this new drug, and so far I'm taking 25mg split into two doses. I'm supposed to get up to 100mg per day, but even at the 25mg it's making me sick. I know it's the drug that's doing it, because I remember these feelings. The hot chills, the crawling scalp, the particular kind of headache. These effects never went away with the Serzone, or with the Paxil before it. It's why I was skeptical when I found out this drug had to be taken in the evening and in the morning. If I take it just before I go to bed, I sleep through the worst. I don't know about feeling like this and having to go to work. Hell, it's keeping me in the house today and all I wanted to do was go to the stationery store.
Here's hoping my body adjusts and the effects wear off...
Tuesday, August 25, 2009
This confuses people who have spent their whole lives bathing every day. They say, don't you feel gross and awful? But they just don't understand what it's like. It hurts to stand there. On really bad days, it hurts to have the water hit my skin. And when I feel weak, it's just scary - I'm afraid I'll fall and really injure myself. It's just not worth it.
Now you're thinking, can't you just take a bath? Well no. Getting all the way down into a tub is pretty difficult when you're in a lot of pain. Not nearly as difficult, though, as getting up out of one. It's also a super hard surface to be sitting on, and I'm pretty leggy, so I usually don't fit too well in apartment-sized bathtubs. It's uncomfortable, which is really not what you're looking for when you're already in pain. So.
Recently this reached a point where something had to be done. Bathing is, all and all, pretty important. So Jonathan and I decided that we'd go ahead and get me something to sit on. I've been avoiding this for years. Why? I don't know exactly. Probably because it's like admitting that I'm sick enough to need it. I think this is a remnant of the household I grew up in. We took this really stupid approach to illness, and other unpleasant things: something like, if we pretend it's not there, maybe it'll go away? Brilliant, I know. So for years it's been hard to shower, and for years I've just let it be hard. But it became too hard, and I couldn't ignore it any more.
So shortly before our trip to New Orleans, Jon went out on a mission. He first went to the drugstore and found a stool made by HoMedics that cost $99 and didn't fit in our tub anyway. He then proceeded to one of the neighborhood "dollar stores" (in case you didn't know, Queens is the dollar store mecca) and found one for $4.99 that fit the bill perfectly. Tall enough that I can get onto it, low and sturdy enough to be safe, and the right width for the tub. It works beautifully.
So now I can shower. It sounds like a small thing, until you've been through this. When you lose the ability to do these simple things: bathe, feed yourself, put on clothes - that's when you start to feel that life is just way too hard to live. Sometimes it's a matter of waiting for a flare to end or asking for help. But sometimes there are simple solutions, if you're willing to accept them.
If anybody's got an answer for getting the dishes done with no dishwasher when your hands won't work, I'm all ears. :)
Monday, August 24, 2009
That's sort of what I feel like right now. Not that my doc wasn't sympathetic to the pain that I'm in. But he was kind of like, well what did you expect? And I suppose he's right. As disconcerting as these things are, I really can't be surprised when they happen, can I?
Granted, in his office I was more overwrought than seemed warranted by the situation. This is because of the acute pain I've been in since Saturday night. It's somewhat abated now, back to something duller and more bearable. But it's left me weak and tired. It's also been really hard to eat anything, which isn't helping my emotional stability.
I went through it all with the doc, and he came to the same conclusions that I'd already reached: that I'm in a prolonged flare up, that life is no longer manageable in my present state, and that we must do something. And what is that something? Well, we're going to try the Savella. He gave me sample packs that are set up in a two week titration - that is, I'll start on two daily doses of 12.5 mg and end up on 2 doses of 50mg. He also gave me a prescription for a pain medication, one that I don't remember having tried before. I haven't filled it yet, because I never start two new medications at once. If something's going to make me ill I want to know which one it is.
So here's hoping this does some good. As soon as I'm able (that is, as soon as this acute flare is finished having its way with me), I'm going to start to build some kind of stretching regimen. It's not new territory for me; I just haven't done it in a while. Right now though I'm fairly well tethered to bed, and there's not much bending going on since the pain is focused in my abdomen.
Grrr. Body. I suppose I have to have one. Sometimes I wonder if it's more trouble than it's worth? Hmm, wonder what my other options are. :P
Sunday, August 23, 2009
For the first time, I've actually taken some real time off of work so try to get my health back to a more workable place. What is "real time"? Only two weeks, actually. But for me, someone who sort of freaks out when I have to go in late or leave early or, god forbid, just call out for the day, it's a pretty big deal.
Now, if there are any fibromyalgics in the crowd, they may be saying to themselves is this girl kidding me? She works full time and calls herself sick? This is total crap; I'm out. To those people, I say: first of all, yes, I work full time. And it's really, really hard. I take several prescription medications and am under regular chiropractic care in order to be able to do so. And even then sometimes there are days that I barely get through, and days that I don't get through or don't even make it to. (At this point I should note that I spend a fair amount of mental energy defending myself from imagined attacks. Symptom common among sufferers of "invisible" illnesses and/or people whose parents did not acknowledge their sicknesses and injuries in childhood? You tell me.)
Back to my point. I had already planned to take the first week, for the trip to New Orleans. This second week, though, was an impromptu decision. I came to it the week before last, on Monday specifically. It had taken me extra long to get up and get dressed and get to work; I was an hour late. Because, you know, I was in so much pain that walking was pretty hard. And within 45 minutes of arriving, I realized I shouldn't have gone at all. At that point though staying was as easy as getting back home. The pain I was in didn't allow me to rest in bed (laying down was excruciating). And the travel home, either by subway or by car, was a more daunting task than I could stomach the thought of. So I stayed.
It was, as they say, the final straw. For weeks - six of them? seven? eight? - I'd been getting progressively worse. More bad days, closer and closer together, and of a greater intensity. I've gone through so many bouts of weeks or months on end of heightened exhaustion, increased levels of general pain, or localized flare ups. This has been something different. I'm still not sure that I know what's happening. But by that Monday I knew unequivocally that if I did not take action, it would keep getting worse.
So I sat down with the two attorneys I do most of my work for. I've gotten myself into a very fortunate position in that I work for two compassionate people that value my "contributions to the team". They're also just cool, and it helps that we're all about the same age. (OK, fine, I'm three years older than both of them. Whatever. They're overachievers and I'm a late bloomer. A subject for another day.) They see what I do to myself, pushing too hard and making myself sick, and then having to backpedal, reel it all back in. And basically they'd rather me take a little time now to get back to a good place than keep pushing it and run into who knows what in another month or two.
So it was decided. It was immensely difficult for me to admit not only to myself, but to people that I work with and for, that things had actually gotten bad enough to warrant needing so much time off. One of my afflictions - one of the reasons that I'll probably be in psychotherapy for ever and ever - is that, whenever I try to explain my condition to anyone, I feel like I'm lying. Or at the very least exaggerating. (This could also be where some of the defensiveness comes from - I'm trying to convince myself. You'd think the pain would do the trick?)
Well, here I am, post week one, about to enter week two. The week where I'm home, and just not going to work. And I'm scared, because I'm not getting any better. Today I'm in such severe abdominal pain that I've barely left my bed. I'm not sure of the provenance of what's happening: whether it's the pain of my lower back inflaming the nerves that innervate my digestive system, or whether it's an IBS flare (I've been having a lot of those lately), or whether the severe craps from my three-day-early period have everything in the neighborhood in an uproar. It could be any combination of these. The end result is the same: I can't stand up straight, and when I try to walk I look like I'm doing my best impression of an octogenarian. Actually, our landlady just turned 80 and she gets around a good bit better than I do some days.
I'm frustrated, and I'm scared. I'm worried that I may not be able to go back next week. How do I go there when I can't walk? I shouldn't. I know I shouldn't. This flare is out of control, and I can't seem to reel it back in. I have great plans for stretching and eating better and maybe starting yoga again. How do I enact them when I can barely get out of fetal position? I have an appointment with the doc tomorrow, and maybe a new pill will help, but I know better than to expect miracles. I also know better than to think it won't come with a price.
Thursday, August 20, 2009
Well, I had a decent talk with the good doctor. I explained to him what's happened over the past eight to nine weeks, which perhaps I haven't properly explained to you. So now I will. Doctors are always asking you to put your pain on a scale of zero to ten, zero being "no pain at all" and ten being "I can't get out of bed I'm in so much pain". Well, this is a rather hard thing to do, because at its core it's asking a person to quantify something that is essentially qualitative. But after thinking about it for eight years or so, I think I've got a grip on it.
I estimate that my everyday, know how to deal with it, it's there but I can function pain is at about a 3. Sure I get stabs of other things throughout the day, but the constant is about a 3. We can't throw headaches into this because they're a whole other ballgame; we're just talking body pain here. OK. So what seems to have happened is that, for whatever reason, I've popped up to a 4 as my baseline with much too regular bouts of 5 or 6, and isolated but frequent incidents of 7, 8, and 9. This is what we like to call "borderline debilitating". I can't live like this.
So I explained all this to the doc. We talked about my migraines, and he thinks that the 100mg of Topamax I'm on for them is fine. It's a low dosage. He doesn't think I should ever be on any more, though, because it may start to cloud my thinking, and "especially with the work I do" that wouldn't be good. Um yeah. He also thinks that if I can stretch more and get the muscles of my neck to stop being made of rock, it will help. Muscles affect nerves too. More on that in a minute.
He was surprised that I'm on as little medication as I'm on, and I explained that I don't like taking pills unless I absolutely have to. I told him that I have Flexaril for when the spasms come, and he chimed in that but of course I can't take it all the time because it would make me too fuzzy during the day. I mentioned the anti-inflammatory that I sometimes take, "But that will upset your stomach" he said. Yes, exactly. They tear the shreds out of my sensitive tummy.
I asked him if he thought I should be on any medications specifically for nerve pain, and he said no: what I need to do is stretch and get my spine loosened up. I'm having nerve pain because 1) the muscles around my vertebrae are so tight that they're compressing the spaces between the bones causing those bones to put pressure on the nerves, and 2) the muscles are tight enough to inflame the nerves all by themselves. Now, I've long thought this to be true, so it's really interesting to have it come out of the mouth of a neurologist. He believes that by stretching (and he's right, I don't) I can relieve some of it.
I asked him about this damn Lyrica drug, which my mom is on and I recently discovered is an anticonvulsant just like the Topamax. He said that yes, it might help with the pain a bit. But that it would also likely cause me to gain weight and to retain water in my feet and hands - all of which would worsen my condition. Basically he said that it's not the right drug for me, so I'm glad I asked him. Many doctors will just say, oh you want that one? Sure we'll put you on that one. This is not a good thing.
He suggested that I look into the two other drugs that have been "approved for use with Fibromyalgia". People think that they are antidepressants because they work on neurotransmitters, but luckily I've taken plenty of biology. Sure, serotonin affects mood. It also governs little things like sleep, muscle contraction, digestion, and the perception of pain. So it makes perfect sense to me that adjusting serotonin would help with dealing with Fibro.
Both of these drugs, Cymbalta and Savella, are in a new class of drug being called Serotonin and Norepinephrine Reuptake Inhibitors (NSRIs). Basically they convince your brain to keep more serotonin and norepinephrin in there than it normally would. This is similar to a class of drugs that's been around for a while called Selective Serotonin Reuptake Inhibitors (SSRIs). I've been on a drug called Wellbutrin for about five years, and all this time I've believed it to be and SSRI. I guess I never did my homework, which is quite unlike me really. It's actually in an entirely different class of drugs and works primarily on dopamine, and has little effect on my serotonin levels. So really all this time I thought I was boosting my serotonin when I wasn't. Annoying! The good news though is that I could add a low dosage of one of the NSRIs to my regimen without changing the rest, which is what I suspect we'll do.
I go see my doc next Monday. I'm nervous. I want this to get better.
Tuesday, August 18, 2009
Of course, we'd been in town for exactly two hours before my mother had made me cry. But isn't that just a mother's way?
That first day, Sunday, I stayed awake for too long and tried to do too much on the four hours of sleep we'd gotten before the flight. As my reward I was awoken at 6 am on Monday by my right calf, in spasm. In the past year or so these spasms have become less forgiving: the main attack will subside, but the muscles along the bone will continue in their excitement for a couple of hours if left to their own devices, leaving me sore for a week. So basically with these things I just don't play anymore. I made poor Jonathan get out of bed and get me a drink so that I could take a flexaril. It of course left me a bit groggy all day, but at least I'm not as sore as I would have been.
This is how it's been lately - each day it's something different, some new body part erupting. I wake up and start to feel it out - what today? Sunday it was that spot between my spine and my shoulder blade, so that each time I took a breath the pain went from a dull ache to something of a stab. Monday was the leg. Each time I stood up I'd have to spend 30 seconds to a minute stretching it out before I could walk again. Today? Well today is early yet, but it's working itself up to be a neck-right shoulder-left sciatic combo. Woo! I'm hoping that once I manage to move around some it will subside a bit.
Because today we have a tasting with the caterer! And I want to be able to enjoy that. I want to be thinking about the food, not about the pain in my back. I'm a little worried about my stomach - lately it's had this attitude like, uh, you put food in me? Solid food!? And you expect me to just stand for that?? I do have some reason for hope though, because I did make it through a dinner at Juan's Flying Burrito last night without incident.
So, here's me, crossing my fingers in the hopes of a pleasant afternoon. Naturally I hope you have one too. :P
Sunday, August 16, 2009
But what really concerns me about flying is simply this: how long I'm expected to sit in one place. Seriously? Three hours? No standing up or anything? I mean sure, maybe there's the one trip to that horrid little bathroom. But if you try to dawdle in the aisle you'll have a talking to from Nancy or Gwenda or Steve, your "friendly" flight attendant. On the bright side, I now get to travel with my man, my fiance, who lets me lean on him and doesn't care if I take off my shoes and always gives me the window seat. But still. I generally can't stay in one position for more than about three minutes. And given the very small range of motion allowed by the typical airplane seat, I run out of options pretty fast.
I try to keep myself distracted. My pain has been so varied from day to day lately, who knows where it will go today? Most of my pain medications are upsetting my stomach right now, so that doesn't seem the best route before getting on a plane (to say the least). I suppose all I can do is hope for the best, and concentrate on the payoff - that once it's over, I'll be in my city, where I can relax in air conditioning and drive around in a car (instead of riding the subway) for a whole week.
And hey, maybe there'll be a good movie.
Saturday, August 15, 2009
* * *
It's sort of like being in the middle of an air raid siren. No, I mean inside of the actual siren - the thing that makes all that noise. What else could explain that level of sound and vibration? It's actually comforting that the quality of the sound changes every couple of minutes - from a honking kind of alarm to a jackhammering kind of noise, and so forth.
It's also a bit like being stuck inside of a Squarepusher album, which itself is stuck on one of the more noisy bits.
Honestly, though, it wasn't so bad. I was only doing the cervical spine, so my test only lasted for fifteen minutes. My tech was really nice, and saw that I was clearly anxious. So he let Jonathan come to the back with me, and then had him fill out a few forms so that he could come right on into the test with me.
Laying down on that plank, I sure did want to start crying (again). But they put a nice blanket over me, and a foam wedge under my knees so that it would be more comfortable to lay still. They gave me ear plugs of course. The "camera" for my neck was attached to a crazy contraption that fit sort of over my head and face, and made me feel a bit like those poor kids with headgear that you see in awful 80's teen movies. Before they slid me in, they handed me a sort of ball attached to a cord, and told me that if I needed to stop and come out, all I needed to do was squeeze that ball. It's the kind of shape that's just reassuring to hold in the hand. And of course, knowing you have a killswitch is comforting in and of itself. Then, in I went, into the tube.
And then they pulled me back out. It was a little disconcerting. But they did it to give me a mirror, one that fit onto the thing that straddled my head, so that I would not only feel Jonathan touching my legs, but would also see him. I think it made all the difference.
It was definitely a test of endurance. I am very, very sensitive to sound. It is also terribly hard for me to stay in one position for more than about two minutes, let alone fifteen. But I did a lot of slow conscious breathing - knowledge left over from my yoga days - and for the last five minutes I was counting down. I have a pretty good sense of the length of a second, because of a habit I had as a kid of literally watching clocks.
When it was over I was quite relieved - and quite stiff. My neck hurt for the rest of the day, just because I'd made it stay still for so long. But more importantly, it was over. Now, hopefully, by Tuesday I'll know what is and is not wrong with my neck.
As one of my attorneys (that I work for - I'm not suing anyone) said, let's hope it's just effed up enough to get me some physical therapy.
* * *
Well, there is no bulging disc, which I'm being urged to think of as a good thing. And yes, it's always good when there's no actual tissue damage. Problem being that what I do have is a pinched nerve due to "normal arthritic changes" in the discs. There is little to be done about this. The docs tell me really helpful things like "get a lot of rest". Which I'm trying to do. I'll elaborate on this later. Even my chiropractor doesn't have much input; all she can say is to keep on coming. Which I will.
And naturally, the insurance company won't cover any therapy. They're so, so not into chronic problems. I gotta get me a sports injury; they're all over those things.
I'm seeing my mom's neurologist this coming Wednesday while I'm in New Orleans, and I'm holding onto hope that he may have some insight that my docs here don't. Of course, he might say something really brilliant - something like, "well, you should get a lot of rest."
Friday, August 14, 2009
And what is that? Well, I've been "sick" since I was 17. I wasn't diagnosed until I was 21, at which time they came up with the big and fancy word fibromyalgia. Super simple definition? Syndrome what causes pain in tissues that aren't bone... and some other stuff. Feel free to google it; just ignore all the hits for prescription meds.
It's not just that I don't have a dedicated blog about it though. I straight up don't write about it: not until it forces its way into my consciousness so loudly that I can't think of anything else for hours or days (or occasionally weeks) on end. But even if I do occasionally write about it, it doesn't feature. I have no tag for "fibromyalgia". I don't have one for "pain", for "muscle spasms", for "another sleepless night", for "migraines", for "side effects of prescription medication". Until about two weeks ago, I didn't even have one for "health".
Why? Because I don't like to think about it. More specifically, I like to not think about it, pretend it's not there. My illness is the basis of many of my daily habits - but, who among us thinks about the motivations behind our daily routines once those routines are in place? I would contend that the purpose of routine is so that daily life does not require constant thought.
It's true, though, that sometimes I do write about it, in blogs and elsewhere. This past winter, I went through an odd bout of localized flare-up that made it rather difficult to walk for a rather long time. It was really quite focused on my right foot and sometimes knee. So my brain was just fine, while my right leg said, "Subway? Are you effing kidding me?!" Housebound and frustrated, I pushed out a zine which I called The Plage Project. I published it through Lulu.com and then posted it on Etsy, and for months on end it met with a huge response from exactly no one.
And then, a few weeks ago and seemingly out of the blue, I received the following message through an Etsy convo:
I think it's the third photo, the one about thyroid... Actually brought a tear to my eye... I've been through that dance SO many times. it took ten years for me to get the fibro diagnosis.It was like being knocked down. You write zines, you throw blog posts into the world, and you sort of fantasize that someone somewhere will have this kind of response to it. It never happens. Except that sometimes it does.
And, I dunno, I just wanted to thank you for writing about it, talking about it, sharing it. It's hard, and I really admire folks with the courage to even try to explain it. Gives me a lotta hope.
I don't know if you'll care, or if it'll mean anything to get this, but I hope so. It means a lot to me that someone else gets it.
Lately I've been going through a bad time again, the kind of time that reminds me, oh yeah, it really is chronic. This is something I always know as fact. I am also aware of the fact that it can get worse at any time, and may or may not ever get better. And it's pretty likely that no one will be able to tell me what's happening or when it will change. Yes, I know all of this. And yet, every time things get rough it knocks me for a loop and I get all emotional. Because no matter how much you know it, it's still hard.
So I've decided, finally, to write a blog about it. For two main reasons I suppose. The first is that I fear this complacency of mine leads me to dangerous waters. Instead of progressing, if I could even do such a thing, I am only maintaining. I ignore pains for too long, pains that might just be status quo but might also be something that need to be looked into - like my current pinched nerve situation, that I could have started treating weeks earlier had I been paying attention. I forget that just because I feel alright enough today to get up and go to work and do the things I need to, that has no bearing on tomorrow. And in fact, if I try to do too much today, chances for tomorrow being bearable grow proportionally slimmer.
The second is that - and this is going to sound wickedly pretentious - if my words could be consoling to one person, maybe they could be consoling to others. This girl who wrote to me, who I've been in some contact with now, seems to have found something really significant in what I had to say about this situation that we're both in. That is, the situation of being relatively young and dealing with the complexities of having a chronic, painful, and "invisible" illness. It's kind of like when you read Catcher in the Rye when you were in high school and you were like, hey, I'm not the only one!
Am I now comparing myself to J.D. Salinger? No not really, I swear. But you know what I'm saying. It's always better to know that you are not alone. So maybe I'll just say it. If you're in your teens or twenties or thirties, struggling to put together a livable life, and simultaneously battling chronic illness, you are not alone.
It still sucks ass though.
So let's talk about it.