I hate when that happens..

I'm not going to edit this after writing, because I'm ranting. Please excuse any major off-topics or spelling/format/punctuation errors.



There is something uniquely infuriating about a complete stranger... telling you that your disability just needs some music and relaxation, and you'll be oh-so-much better.

Part of me wishes I was making this up.. the other part knows, for a fact, that I spent 20 intensely uncomfortable minutes trying desperately not to offend, and simultaneously leave the conversation.

Normally I wouldn't be terribly concerned with offending, since I find the dismissal of my condition at least equally offensive, but in this case, I had very little choice.

Why is that? Well the person telling me all I need is some music and relaxation... is one of my professors. One I'd never met before, and one which I have for the next three months. Ultimately, he has final say over my grade, and I'm not exactly a wallflower (behaviorally, yes, but I also dye my hair bright funky colors, so I'm.... memorable..) so I do what I can to avoid getting on the bad side of my teachers.

The conversation started when I did what I am required to do; gave him my disability accommodation paperwork. I miss an average of 2 days a week, much to my chagrin, and I need extended time for exams just in case I do have a nasty headache on exam days. I still don't necessarily do as well as I'd like, sometimes, but it's part of life with chronic conditions, and I make due.

So I did what I always do, because I feel that disclosure is important; I told him not only that I had accommodations, I told him about what he could expect as far as absences are concerned, and what leads to these absences. I give no illusions about the severity of my headaches, nor the effects of the drugs I take for the bad ones (they prevent me from driving). Since I have a 45 minute drive to campus, medicating means I have to stay home; that's just the way it is. Apparently this was the ONE professor I should not have been honest with.

An aside - some people are OK with not disclosing anything about their conditions, and simply making sure they get accommodations. I respect that, but I'm not ashamed of my lot in life (it's not as though it's something I have control over, after all), and I find that full-disclosure works best for me. Having my professors know that I have headaches every day, whether I'm in class or not, really seems to help, since that information allows them to slightly adjust their expectations of my in-class performance, and reinforces that I'm doing my best to be a good student. I DO NOT use full disclosure when applying for work, however, and generally don't even mention having a disability until after a job offer has been made. They are required by law to make reasonable accommodations, so I see no reason to screw myself out of a job by letting them know ahead of time that I will need them. Employers may not be "allowed" to discriminate in hiring someone because of disability, but that doesn't prevent employers from simply skipping over those applications - they can always claim they didn't hire for a different reason. Shady? Yes, certainly. Part of the current system? Unfortunately, yes.

Back to it-
The conversation, if you can call being talked at a conversation, dissolved quite quickly into "you just need some god music - here's some for you that will help substantially - and relaxation, and you won't have problems anymore."  ...... yaaaaaaay....

Now don't get me wrong... I most certainly explained that, indeed, I've tried what he suggested, and indeed, I have tried a ton of other things as well. Truly, you'd have to be mad to not try anything to relieve your agony when it's been going on half your life. I explained that, despite everything, and having a team of neurologists and other doctors trying to figure out not only the cause but the cure as well, nothing has helped substantially. I also explained that there is very little hope, from any current field, for a recovery from this condition, and that I've had all sorts of treatments, many of which focused largely on exactly what he suggested - relaxation.

But no. He followed my insistence that it wouldn't help with a story about how he, at 70, had spent most of his life with "mental problems" (whatever that means) and the music and yoga were all he needed... Mind you, this is a teacher of science.. I would expect him to know that anecdotal success for one issue doe NOT automatically translate to success with another issue.

Then it dissolved further into talking about spirituality -shudder-. I don't even like talking about that sort of stuff with people I know and whose company I enjoy (unless they share my views, in which case it's not so much discussion as collaborative bitching). To have a complete stranger talk to me about how our souls leave our bodies every time we fall asleep, until that one last time when our souls depart our body to "wherever your religion believes they go"..... let's just say there is absolutely nothing I wouldn't rather be doing.

For one thing, I'm not religious, I'm scientific. If you can't prove it, or at least provide ample, scientifically rigorous, evidence in favor (and no religion, thusfar, has -any- scientifically rigorous evidence in favor, sorry) I don't buy it. I don't have the capacity to believe things that can't be proven, even if they do turn out to be true. I do, however, have enough confidence in my worldview to change it when new evidence comes out, and I even frequently mention just how wrong I was. That's part of being a scientist! I don't feel any need to spend hours a week in church, nor pay hard-earned money (collection plates) just to have someone tell me to be nice - or else. I'm pretty sure I, and most other people on earth, are smart enough to figure that out on our own.

For another thing, even if I was religious, even with the inclusive words he used (he did say "whatever your religion believes"), the topic isn't appropriate for strangers. It's just not, ever. If you are one of the people who talks to strangers about religion, knock it off. It's exceptionally rude, even if the stranger agrees with you. Seriously. I cannot even begin to emphasize enough how entirely innapropriate that sort of shit is. They are called "personal beliefs" for a reason. (The one-and-only exception is at church or related function, and even then, be VERY careful.)

It took all of my self control not to just tell him to shove it. It took everything I had to just keep standing there trying to respectfully leave the conversation. I tried several times to actually walk away, even, with no luck. I made absolutely no attempt to hide my discomfort, nor the fact that I desperately wanted to leave the conversation. I contributed next to nothing to most of said conversation, except "no" and variations thereof.

If you have any advice on handling this situation in the future, I'd love to hear it. I have such a hard time with confrontation, even exceptionally mild confrontation, that I typically try to avoid it.. So anything must be better than that :P
Leave it in the comments!

Back to life

I'm not a very patient person.

Now that that is out of the way, let's just say I'm not actually thrilled by having my activities limited by this whole surgery recovery thing..

Cleaning cat boxes this morning caused wound oozing, sneezing hurts like shit, and I can't even get my normal exercise in because I can't run full-tilt up and down the stairs 20-50 times a day (I do this to avoid needing to go out of my way for exercise, because exercise is boring and super tedious).

I have similar problems with other injuries, and frankly, I blame it on my incessant need to cope with discomfort. Were I not skilled at ignoring discomfort, recovering from things would probably take less time, since I wouldn't keep injuring the area, but at the same time, it could be said that being uncomfortable, even aggravating painful stimulus, helps with not just healing, but coping.

What?

Pain is an indication that something is wrong. Usually. But if you know what's wrong, an ache can be good. Like rubbing a bruise to increase blood flow, or stretching sore muscles. Pain also triggers the release of the body's own painkillers and neurotransmitters.

Other than sneezing, coughing, and the occasional shifting in such a way as to hurt myself, these incisions aren't really all that painful, and perhaps only partially because they are in an area I am already quite skilled at avoiding. The 5-year-healtime of my dermals taught me to avoid my belly with anything that could knock into it, snag a piercing, or generally cause irritation. I haven't had a strong urge to sleep on my stomach, nothing has bumped it, and I haven't done too much painful twisting, outside of trying to do my normal activities.

Most of my discomfort from my incisions is actually a result of intentionally stimulating the pain, both to judge the severity (I know what infection/inflammation feels like, and I can usually tell the difference between the two) and to stimulate blood flow to help the healing. It doesn't feel spectacular, but it also doesn't... hurt.. sore and sensitive, yes, painful.. not so much, though the incisions are starting to itch.. like mad...

My headaches are starting to come back full-force as my body adjusts to the new sensory input. I had some mild relief for a couple of days while my brain was busy processing the new pain, and had limited resources for the normal pain. I find this to be what happens when I get new piercings, as well, and the effect lasts about a week, on average, but can be brought back by intentionally bothering the wound. As the swelling and CO2 dissipate, my organs are readjusting, as well, which turns out to be pretty uncomfortable. I've had a lot of chest pains and major back/shoulder pain, but I've been a good little monkey, and haven't been taking my painkillers.

I also have a lot of cramping. That's the worst of it for me. I've been on long-term birth control since I hit puberty, more or less, so I've really never had to deal with -ahem- ladytime. I like it that way, and having to deal with it now really blows. I need to get in contact with my GP and get my depo started, but I haven't gotten around to it, yet, and it's not immediately effective anyway; it can wait.

I did reward myself yesterday with a small glass of wine (mixed with soda and water kefir to make, basically, a wine cooler) and I actually ended up tipsy.. I don't drink much anymore because my body doesn't tend to process alcohol very well, but usually that isn't enough for such effects. I think heat + compromised system + inability to process normally all combined for a very very quick buzz. I'm a cheap date, now!

Tonight, I think I'll try to reward myself with an intense kitty cuddle session; I have four to choose from, although three of them aren't really ready/interested in that sort of affection just yet; one of my established cats is pretty upset about the new kitties, and the two new kitties are still a bit too skittish to cuddle, though one will lay in the space next to my stomach if I curl up on the floor with him and don't try to touch him.

As with everything in a life, especially life with pain, it will just take time.

Time is something I'm fairly certain I have.

Trading in Problems

WARNING - this post discusses GI functionality. I will do my best to avoid any graphic language, but be aware. You have been warned.

For as long as I can remember, I've had tummy problems. Actually, that's not strictly true; for most of my life, my tummy problems were transitory, came and went depending on my diet. A number of years ago, possibly around the time of my military service, but I could be mistaken, everything changed.

Suddenly, I was getting cramping, bloating, and motility issues.  I thought, for sure, it was the large quantities of milk I was drinking every day, because when I stopped, so did my tummy problems. Lactose sensitivity was, I believe, only the beginning, because when I cut dairy from my diet, the problems went away for a while, but then came back just as strong.

It got to the point where nothing I eat sits well. Within a handful of hours of eating, my tummy blows up like a balloon, so I now only eat at night, knowing that at least if I'm asleep, I don't have to try to do anything when my tummy pain is at it's worst.  I was diagnosed with IBS-C, which I will leave to you to look up if you are not familiar.

IBS isn't so much a diagnosis as an acknowledgement of distress. There's no known cause, no known cure, and the treatments are lifestyle and amazingly strict dietary changes that severely impact quality of life, assuming they even work (for many, including myself, they do not). Additionally, IBS is more of a compilation of symptoms than an actual condition, as the criterion for it are quite broad and overlap with numerous other, known, conditions. Frankly I think it's a cop out; patient gets a diagnosis, which is all some of them want, but that's it. Once you have an IBS diagnosis, that's more or less where your guided treatment (with doctors) ends, because most of them have absolutely no clue what to do, and yes, that does include, for the most part, GI specialists.

So I started doing my own research on the symptoms I experience, and I brought this info to my doctors, both to get their opinion of it, and see if there was any way they could help. Mind, I'm not getting paid to do their job for them, but I certainly should be. I'm not entirely negative on doctors, but I'm absolutely balls-to-the-wall frustrated by their lack of giving a shit. I realize that there are a plethora of new ailments these days, likely caused by the industrial lifestyle we live today, and that's difficult to keep up with and all, but when your doctor asks, every visit, "Where would you like to see your treatment go? What do you think would help? Is there any treatment you'd like to try?" it really emphasizes that they aren't doing any looking on their own. Isn't that what doctors are supposed to want to do? Learn how to help their patients find relief, even if it means doing a bit of *gasp* continued education? After all, a doctor who has done the bare-minimum professional development (continued learning) will be out-of-date on a lot of info, and the longer they have been practicing, the more outdated their information becomes.

It's not my job to be a doctor, to do a buttload of research, to suggest my own treatment. I don't know what I'm doing, medically, but because I find the topic quite interesting, and go out of my way to learn about biology and medicine, I probably know a lot more than the average person. I shudder to think what the average person goes through when they hear something like that, especially if they don't have the innate drive to research that I have developed. I believe this is a symptom of a larger problem; it goes along with drug companies marketing direct to uninformed consumers, rather than to doctors, as they should, and are required to do in many parts of the world where direct-to-consumer drug marketing is banned. They are relying on people with no knowledge of biochemistry, hormones, anatomy, organ interactions, etc etc etc, to request their drug based on misleading commercials. And people do exactly that. Because the commercial tells them to talk to their doctor about it, when the doctor should be talking to them about it. That whole system is a disaster-mess, and it's WRONG. Wrong and harmful, depressing, alarming, and it makes the patient feel worthless. If their doctor doesn't even care enough to suggest another treatment, the patient must be complaining too much, or have a problem the doctor doesn't care to solve.

Consider it this way; you are having a house built. You hire an architect to design the building, which turns out to be very complicated structurally, even though from the outside, it looks fairly simple. Something goes awry, and you notice a problem with the structure, and you point out the problem to your architect. Said architect then asks you what you think should be done about it, and you have the pleasure of learning all about construction to answer, because said architect will do no research for you. Even though that's exactly what they get paid for, and they know more about it than you do. More likely, you get upset and fire the shitty architect. You wouldn't stand for that sort of treatment, yet this is exactly what happens every day with doctors across the country, and it's horrifying. They aren't all like that, but enough of them are for it to be a major problem.

I have gotten little help from doctors on my IBS problems, so of course I looked for any dietary factors that could help, and I hit on beneficial bacteria. Now, I know that probiotic supplementation isn't likely to cure long-term problems, so I went into it expecting little. I used kefir for my probiotics, both milk and water varieties, and cultured my own with grains I bought on amazon for $12. Kefir contains 10+ (actual number varies from one set of grains to the next, depending on what they are fed) strains of bacteria and yeasts per type of culture, and the residents of milk kefir are different from those in water kefir. OTC and Rx probiotics contain 1-5 strains in much smaller quantities, and I'm a cheapskate.

I was surprised. I still have major tummy problems, the gas and bloating are still entirely present, as are the abdominal cramps, but joyously, I have switched sides from IBS-C to IBS-D. Believe me, the latter is easier to deal with. Unfortunately, the problems I have remaining seem to be something like SIBO, although I strongly doubt it's a bacteria overgrowth; more likely it's a candida -yeast- overgrowth, since yeasts produce copious amounts of gasses. I'm not yet entirely certain how to deal with this, but new information comes out about digestive problems rather frequently, so perhaps it won't be long.

In the course of this swap, however, I seem to have lost 13 lbs. I've never, in my life, lost 13 lbs; since the time I started wrestling at about 14 -when I went from 115 lbs and 21% body fat to 119 lbs and 14% body fat- I've been within 4 lbs of 123. I'm reasonably active; I run full-speed up and down the stairs in my house multiple times through the course of my day, lift and shift heavy objects regularly, including 5-gallon buckets of water for my aquariums, etc. I eat mostly healthy, home-cooked food (my partner cooks for me; he's wonderful-I'm not a great cook.) and nothing, as far as I am aware, has changed except how long food stays in my system. Oh, and I cut out some sugar from my diet (by "diet" I mean "coffee"), because holy fuck is that stuff bad for you. Seriously, sugar, in the quantities we consume these days, is toxic. But I don't think cutting a minor amount of sugar from a diet that already contains very little (except I do love my fruit and occasional candy) would have done this.

So now I have a conundrum; If I eat more, I get the pleasure of more frequent pain. If I don't, I may lose too much weight to be healthy.

What would you do, in this position?

Feeling bad for having limits

I feel like a horrible person today.

Why, you ask?

Because I can't do the things I want to do.

Small potatoes, right? well not this time. This time, well-being is on the line, and not just my own.

In 2011, my mom died of cancer. About 7-10 years before that, she bought a pair of conure parrots, and didn't do much with them. When she died, I inherited them, because nobody else could or would look out for them, and pets are a serious commitment in my family; almost all of them have been rescue or adoption, and we understand all too well what giving up a pet means. It's not a decision we have ever made lightly.

2 years ago, I had to find a new home for one of my cats who was having major adjustment issues when we moved. She was the type of cat who needed to be the only cat, and who needed a lot more affection than 2 people with active lives could give her. Basically, she was the type of cat who needed a big family. We do not, nor will we ever, have that, and the realization that we couldn't provide for her was painful. We tried absolutely everything to help her cope with the new situation, which included moving to a house which was much larger than my old apartment, the boyfriend moving in as well, and the previous owners of the house having had pets of their own which marked the carpet. She began marking her territory, claiming the humans and chasing off the other cat, howling at night, all night every night, harassing us in bed, the works. She started throwing up more often that she had previously (long-haired cat; she threw up a lot already) and seemed generally stressed and unhappy. We tried for 6 months to help her adjust, and made no progress.

I had to think long and hard about what she needed, instead of what I needed. Eventually, I found her a family with 4 kids and no indoor pets, where she could be the adored center of attention whenever she needed to be. Somewhere that she didn't feel like she needed to claim her space, because it was all her space.

This situation is slightly different. Conures REALLY like to scream. I'm pretty sure it's their favorite activity. That would be OK, if it weren't for the headaches. As it stands, though, every scream is like an ice pick in my skull. I can't give them what they need because I can't cope with keeping them. That's horrible. I want to spend time with them, and train them, and play with them, but they haven't been worked with enough for that to be feasible, and when I do try to work with them, the noise they make just kills me.

I grew up with birds. We've almost always had them. My parents had a cockatoo when I was small, I had a 'keet of my own when I was 11 or so, and of course the conures, so I'm comfortable with them and their needs, just.. the noise. Parrots are well-known for their insane volume, and the bigger the bird, the louder they are; conures are roughly a foot from beak to tail, so they aren't the largest or the loudest, but they are still quite obnoxiously loud and, like I said, they love to scream. Especially when you get a phone call.

I don't even mind the biting, to be honest, since it only happens when they get out of the cage and I have to catch them -although it does usually draw blood, and I wouldn't mind something with a little less skin-piercing ability- but the preying mantids I kept in the living room last year had easily as much ability to injure me, and I loved keeping them, as well. You just avoid behavior that provokes them, whenever possible.

Conures can live for 35 years. Mine are about 15 now, give or take a few years. I don't think I could survive another 15 years of them. I've done my best, and I've trained them to the best of my ability, but they were never handled before I got them, so progress is painfully slow. I thought if I could just get them to interact with me, I could deal with the noise as a trade-off for companions. This has been largely unsuccessful, because I have no clue what I'm doing, especially with something so smart. They are much easier to train before they are mature, and while older birds can be trained, I don't have a clue how.

I find the situation terribly frustrating; I can't deal with them, I don't want to abandon them, and I don't want to lose the companionship of my critters. I keep a lot of pets to fill a void within myself; I enjoy having things that I can be responsible for, which I can keep happy and healthy, but which don't require a set schedule like dogs and their incessant need to go out to potty, or kids.. we all know how demanding those things are.. :p .  I like having critters with which I can interact and observe, since the calm of observation and the relaxation of focus (interaction) really seem to help me stay grounded.

Today, I contacted a bird rescue group. I feel like a failure for not being able to be a person who could take care of them. I tried, for 5 years, to be that person, and I just can't do it; the noise is just too much. I feel like even more of a failure for including, with the letter, a statement about wanting to continue keeping birds, as I really enjoy them, and suggesting that perhaps a group of finches or parakeets might work better for me, as I've kept them before and enjoyed the company. This is pure speculation, but I assume that rescue groups don't like to hear "I can't deal with this pet, but I'd like you to give me a different one."

I explained the whole situation, including why I ended up with them, why I can't keep them, and why a different sort of bird would be OK while conures are not, but.. if I were them, would I trust me? I don't really know.. It's not because I don't have the capacity to care for them, it's just that what I ended up with is a bad fit for my life.

I hope the bird rescue place will understand my situation, and try to work something out with me; I don't have a lot of money for adoption fees of new birds, especially multiple birds, but I don't want to lose my companions just because I realize that the ones I have now aren't getting the life they deserve. I also hope they won't think I'm a bad person for wanting them to go to a home where they can be loved and adored as the beautiful companions they deserve to be.

Rock. Me. Hard place.

A letter to loved ones

This will be very long. It needs to be long. This is an open letter to everyone in my life, both those with and those without chronic pain. There is just so much that sufferers don't want to or cannot put to words. We cope largely in silence, sometimes because we don't have the words to say what needs to be said, sometimes because we realize that our needs are enough to discourage connections with those we care about. Whatever the reasoning, there are things that need to be said, and this is to address some of those issues in my life.

Dear Loved Ones,

Most people, whether they are aware of it or not, know someone who suffers with chronic pain. Despite this, most people don't have any idea what that means, because unlike obvious illnesses or injuries, chronic pain tends to be invisible. Facial expression and body language aren't always reliable indicators, because many with chronic pain don't want their suffering to be visible, and work hard to suppress those signs. You can't see a headache, you can't see back pain, you can't see what we feel, and that sucks. It sucks because it's easy to ignore or dismiss something you can't see, but we still feel it. It sucks because you never know when we hurt unless we tell you or let you see our pain, and we don't always want to be seen as complainers.

So perhaps it would be helpful to share some information with you, the people who might care about me. I hope this will be as useful to you as to me, since that's the whole point. It can be difficult figuring out how to deal with someone like me, who has chronic pain, just as it can be difficult to admit extensive needs. I share this out of love and care, not to induce shame or guilt; I want this to make our interactions more peaceful and pleasant for both of us.

First, and perhaps most importantly, please understand that I don't mean to be negative. I don't mean to be short with you, or seem frustrated or angry, and I do my best to avoid taking anything out on you when it's not your fault. When I'm in pain, though, it's very difficult to be the person I want to be. I try very hard to give you the respect and appreciation you deserve, but sometimes it's just difficult for me to be as patient as I'd like, sometimes it's tough for me to see the silver lining, and it's sometimes very difficult to ignore the frustrations in life. Think of the last time you had a really bad headache. Now imagine it hasn't gone away in years. That's really frustrating, and that's my life, in addition to all the normal stresses like school, relationships, and money. I'm just like you, just with pain.

Repeat the above with back pain, leg pain, arm pain, stomach pain; any kind of pain. This applies to all chronic hurt. Many sufferers, myself included, have more than one kind of pain.

I have bad days, just like you do, it just might happen a bit more often for me. My body is a prison, and I'm serving a life sentence for a crime I don't remember committing. I deal with it as best I can, and I cope, but it's a struggle to stay positive, knowing that this will probably never change; most chronic pain is never cured, the best we can usually hope for is symptom reduction, and even that is a dream to many. This is my life, and I make as much of it as I can, but I can't do all the things you take for granted, and that fact is painfully obvious to me. Once in a while, I like to feel sorry for myself, and wallow in self-pity for a time. I think I've earned that, so if I seem resistant to cheering, leave me be.

Depression is a common side-effect of chronic pain. Think about it for a second, it makes complete sense; you'd be depressed too, if you were stuck in a body that didn't work properly and constantly overloaded your senses with painful stimuli. But please, don't mistake stress or depression as the cause of my problems; my doctors and I have already explored that possibility ad nauseam. It's not about not trying hard enough, it's not because I'm unhappy, and my pain is not psychosomatic. I don't know why I have this pain, but I do know it's not something I can just cheer myself out of. I've tried. A lot.

I know I seem unreliable. I am unreliable. Even to myself. I can't count on my body to be able to do things when I want or need to, and that translates to you not being able to count on me. I'm sorry; I don't want it to be like that, and I try really hard to ignore my limitations whenever I can. I don't want to be flaky. I make commitments because I really want to be able to keep them, and I frequently disappoint myself when I can't. If you think my behavior is frustrating, try being me. It's so much worse from the inside. I'm not offering this as an excuse, I just want you to know that I hate it, too.

Please try not to get discouraged when I have to cancel a previous commitment at the last second; believe me, I want to go more than you can imagine, and there have been many times I've gone knowing full well I shouldn't. Instead, I would really appreciate it if you would try to work with me to find a compromise that gets me out and in your company, but still doesn't force me to spend that time completely miserable. If it's something that can be rescheduled, let's do that! If it can't be rescheduled, perhaps I just need to know that I can get a ride to a safe and quiet place if I need one, judgment-free. Maybe all I need is a place I can retreat and recuperate while I'm there, where I know I will be left alone. If I still say no, please don't take it personally. If you want to be angry, please don't be angry with me, be angry at my pain; it showed up unbidden, I did not ask for it. You can hate my pain -I certainly do. You can hate it, you can be angry with it, you can want to stab it in the face and rip off it's gonads, but remember; my pain is not ME, I am not my pain. I'm still the same me, stuck inside a failing body, and it's not my fault. I wouldn't have chosen this, so please, I beg you, remember that.

If I tell you I can't do something, and I've still said no after you've offered to reschedule or accommodate me, it might be because it's an activity that makes my condition worse. There are many days when I can't bring myself to interact with people, because I have a short fuse and a lot of pain. There are many days when getting out of bed isn't an option, even though I look fine from where you are. Getting out, getting my mind off my troubles, these things don't make me feel better, and sometimes they make me feel worse. I know it's hard to understand, but I've lived with this pain long enough to know which activities I can or cannot do at certain times. Sometimes I do them anyway, because losing out on my life really sucks, but that doesn't mean I'm always up for putting myself through that. When you do too much activity, you might get sore muscles, or be tired from exertion. When I do too much activity, it can really aggravate my pain. Increasing my heart rate sometimes makes my head pound, including a slow climb of a flight of stairs, an activity you probably take completely for granted. I usually know what type of pain I have on a given day, and what helps or makes it worse.

I can't predict from day to day how I will feel. Usually I have a good idea on the minute-to-minute, but pain can rear it's head any time, any place, with no warning. The intensity also varies considerably, and although I might be able to do something one day, that doesn't mean I'll be able to do it today. Just because I did something earlier in the day doesn't mean I can right now. Saying something like "but you did it before" or "you do -something similar- all the time!" hurts me. I wouldn't say no if I could do it. Some activities make my pain considerably worse, even if it doesn't start right away. I might be good for a hike, but hurt for a week afterwards. I might go to a bar for an hour, and have a headache for 2 days because of the noise. Delayed pain is part of my life, and sometimes, doing something I really want to do means I can't do anything else for a while.

Many people with chronic pain experience variations in the quality and location of pain. I know quality of pain seems like a ridiculous concept, but the truth is, our pain isn't just pain. Many of us don't know what kind of pain we will have from one day to the next; shooting, burning, aching, throbbing. We don't always know where we will find our pain from one day to the next. If we've been afflicted long enough, we know how to identify the types of pain we experience, what causes them, and what relieves them, if anything. We've learned to identify our symptoms so that we can cope with them. Sometimes the explanations for behavior will include symptoms you've never heard of before from the sufferer; this doesn't mean it's not true. Just keep in mind that we are completely unpredictable, even to ourselves. We don't know how this is going to play out any more than you do, but we need to be taken seriously. We don't have great words to describe this experience, so we do the best we can with limited vocabulary.

So all that said, I'd like to ask you a favor; rather than ask me if I -want- to do something (I desperately do want to, honestly), ask me if I am able. Even if I look totally fine, please ask if I'm able. I would happily field that question a million times when I feel perfectly OK, just to make sure you also ask it when I'm not feeling well. I know you can't really tell when I'm hurting, so don't worry about offending me -In fact, I've been working for years on not showing my pain to the public; that you can't usually tell means I've succeeded in looking normal. The reason I want you to ask is that, if you ask every time, instead of saying “let's go do ---”, I get to actually say yes, I am able to do that today. If you don't ask if I'm able, but only if I'm interested, saying no means I don't -want- to do things with you, which is not at all the case. I hate saying no to activities, I just don't get enough opportunity to say yes. Help me say yes to you; I promise it will make us both feel better.

I want to spend time with the people I care about, just like you do, and I get lonely, too. I get lonely when my pain keeps me home, and everyone else is out having a good time. I put on a brave face, sometimes, and deal with my condition, just to be around you. I may appear to come and go, I might lose track of conversation, and I might not have much to say, but that doesn't mean I don't appreciate your company, and it certainly doesn't mean I don't want to listen. Because of my limitations, I don't have an expansive social circle, but I deeply value everyone I've chosen to share my life with, and I miss you when my condition keeps me from being in contact.

Having limitations doesn't necessarily mean that I can't do anything at all, and I really take pride in the things that I can still do without help. Certainly, it might take more time for me to do things, and I might have issues finding motivation sometimes, but I am very proud that I can still take care of some things myself. I appreciate you asking me if I would like help, but please do not simply do things for me if I have mentioned wanting to do them. I select projects for myself based on my own capabilities, and doing them for me denies me that satisfaction. If you would like to help, ask me what you can do, I'd usually be glad to have the help. I may say no, and that's OK, too, it just means I'd rather do it myself, because I have it all planned out already.

Please understand that being happy doesn't mean I'm healthy or pain-free. I work very hard to keep myself happy despite my condition, even when it's at it's worst. I smile and laugh even when I'm in agony. When you get sick, or hurt yourself, it might be all you can think about, and you might feel miserable. I've felt like this for so long that I just can't be down about it all the time. If I seem happy, I am. Please remember that these two facets of my life are not connected anymore. Pain is my constant companion, but that doesn't mean it gets to decide how I live my life. I ask that you not assume that being in good spirits means I feel fine. It doesn't, I still hurt, even when I'm in a good mood.

I know that you want to help me feel better, but please don't suggest a treatment or cure to me, unless you already know what I've tried. I know you mean well, and I do so want to recover, but I hear about "cures" and pain relief techniques all the time from other people who also want to help me feel better. Not only that, but I spend a considerable amount of time researching my conditions, looking for anything that has promise of helping. If you've heard of it, I probably have, too, and chances are, I've also tried it. I'm desperate for relief. There is a huge network, both on and offline, of people just like me, with conditions just like mine, and we share our treatment information with others. If that "cure" you saw on Facebook, yahoo answers, or some blog was really a cure, we would know about it by now.

Some of the suggestions I've gotten from people have actually made my pain worse; some of the medications I've been recommended have caused side effects that threaten my quality of life; some of the treatments I've learned about seem promising, but they aren't covered by insurance. These factors all lead to my condition being worse, not better. Obviously, if you've come across some new research about my conditions, and you think I may not have seen it, by all means, pass it on to me, just please don't get my hopes up with an overly-optimistic title for your message. Cure is a very strong word, and my conditions currently don't have one, despite oodles of research into the mechanisms. "Cure" gets my hopes up, and the letdown is really harsh. My doctors and I have a treatment plan, but I may talk to them about what you share with me, just the way I talk to them about research I find on my own.

Please don't ask me how I'm feeling, unless you really want to know. If I miss a commitment one day, don't ask me the next if I'm feeling better, because the answer is always going to be “no”. That's just how it works for me. Even if I feel better, I still hurt, and I don't like lying to you so that you don't feel sorry for me. I know it's hard for you not to ask, and I appreciate that you care enough to want to know, but it just puts us both in an uncomfortable position, and I'd like to avoid that. Just know that if I'm there, I'm well enough, and leave it at that.

I want you to know that I'm not distant because I want to be; a lot of times, I can feel the cognitive changes that take place when my pain sets in. I can feel my brain slow down. I can feel my motor control deteriorate. I can feel my distance, and I hate it. I forget things, even mid-conversation, I lose words, whole segments of what was just discussed, and I even, frequently, experience a delayed self-awareness (as in, I don't always realize what I've done or said until after it's been done or said). This whole thing is really scary for me, so sometimes I just keep quiet and listen. This is especially true when there is a lot of input to keep track of, such as with a large number of people. My pain slows down my processing of what's going on around me, often to the point where I couldn't contribute if I wanted to.

I also want you to know that I don't distance myself physically because I want to. I frequently spend half or more of the day alone, just so that I can get things done. I forget what I'm doing halfway through a task, or something distracts me, and whatever I was doing vanishes from my consciousness. If I've chosen to be alone, please just leave me alone. Please don't pop your head in to ask if I need anything, or want anything, or want to do anything. I know you mean well, I really do, but it's aggravating, sometimes quite startling, and frequently makes me lose track. Please rest assured that if I need anything, I will ask. If I spend 12 hours holed up by myself, it's because that's what I need to do. I may seem fine when you come to check on me, I may even be reading or playing a game, but I'm not fine, or I wouldn't be alone. When my pain is bad, I can deal with solo activities like movies, books, or games, because I can put them down when I need a break or start to hurt too much; doing these activities does not mean I'm fine. I would never get to do anything if that was the case. Having to explain my actions all the time is -humiliating-. I don't want to have to defend my coping strategies, so please don't make me.

I don't distance myself physically because I'm a china doll, but sometimes I do get sensitive to touch, just like I get sensitive to light, sound, motion, and smells. If you'd like a hug, or think I would, just ask, or do the arms-out thing, and just don't be too terribly offended if I don't accept it, or say no. I may go through spans where I'm not terribly interested in much physical contact with anyone, and that may be because of my mood, my pain, or any number of other factors, and that's just part of who I am. It has nothing to do with a desire to be loved or appreciated, it has nothing to do with my love or appreciation for you, it's just how I am.

If I don't get anything productive accomplished, such is life. Have you ever looked at a sink full of dirty dishes, knowing they need to be done, and just cried because you couldn't get yourself do it? I have, both due to pain and to depression on bad days, and it sucks. I'm not trying to be lazy, and I'm not trying to have no responsibility, there are just days, even times of day, when getting anything accomplished is pure fantasy. I feel guilty as hell about this, because I have all of my appendages and I'm not paralyzed; there's no outward reason to be unproductive. I'm trying to accept that I can't do everything I think I should, at least not on a schedule, but it's really hard to avoid feeling guilty. Just know that I do what I can, when I can; not being able to do things when others want them done drives me to do things when I have the ability.

I know this is a rough situation, and I know I'm asking you for a lot, but I count on the people in my life who are able, and I do my best to reciprocate any way I can. It's far from ideal, but this is the best I can do, even though I want to do so much more. I appreciate everything you do for me, even when I find it upsetting, because I know you can't possibly understand what I need if I don't tell you.

Thank you for taking the time to read this. I appreciate it more than you know. I hope this will help resolve some of the issues we may have, and strengthen our relationship even if we have no issues.

--------------------------A note on use of this letter--------------------------

If you would like to reproduce this letter in a publicly available location (facebook, your blog or website, forums, etc.), please do not alter it in any way, and acknowledge the source (I cope, therefore I am) with a link. I spent a lot of time writing this out and editing it for people like me who just need to share through writing, and the content of it was specifically selected to be some of the harder things to discuss honestly and bluntly with loved ones. I know my views may not be entirely applicable to everyone's situation, however as a base for those people who need it, the difficult topics are intended as an edit-able starting point.

If you would like to adapt this letter for personal use, without the intention of posting anywhere public, feel free to do so without acknowledgment. I want this document to help make life better for someone out there who, like me, just can't say the things that need to be said to have a good life.