Getting sterilized

So I'm finally taking the plunge. Not the same plunge most people are talking about when they use that line, but something no less important.

I'm on step 2 in the process of getting a tubal ligation. Step one was getting a recommendation from my PC doctor, step 2 is the consultation I have scheduled for the 14th.

The whole thing is apparently much easier if 1. There is something wrong with your reproductive organs. 2. You have had an abortion. 3. You have already made your family.

That's not horrible, that the process is harder for someone without those qualifiers.. but it does suck having to explain over and over that yes, yes I have thought about this, and yes, even though I'm under 30 and childless, this is what I want.

I'm trying to give my doctors an honest impression of my situation, and to that end, when asked (screening question) if I'd ever had an abortion, I said "quite honestly, that's exactly what I'm trying to avoid".

Now, I realize how horrible it is to say that my options are sterilization or abortion, especially since I personally know other women who want and cannot have kids, but for me, that's reality. I made the decision a long time ago that, given the state of my life, if I found myself pregnant despite my best efforts to prevent it, the quality of life of the child was more important than any guilt I may feel about the process. Since I don't feel I could give a child what it deserves, abortion is my best option -mind, I do use birth control, and always have. Abortion is not an option I wish to exercise if it can be avoided. If you don't agree with that decision, that's your right, but this is the choice that's right for me, for my life.

What it boils down to, at the end of the day, is that I realized that I don't have much capacity for nurturing. Sure I can manage pets, and sure, I look fine with kids, but I'm not. They make me uncomfortable until they hit double digits, because they aren't capable of having much in the way of a real conversation. I don't have the patience to deal with kid-noise, and I can barely keep my house clean as it is. Very simply, I know I'm not responsible enough to trust myself with a child.

Let me rephrase that; I might be great with kids, and that's awesome, but I'm not cut out for parenting. I highly respect people who can do the whole reproducing thing, especially if they thought about it beforehand. I want to be very clear that I'm not judging others because they've made a different choice than have I. I try to ask for the same consideration.

Someone who doesn't want to get married or have kids doesn't get that sort of respect from society. I've heard it all. "It'll be different once you have them." "You are too young to make that sort of choice." "You'll regret it if you don't do it." "You are being selfish, what if your partner wants kids?" "everyone thinks they don't want them until they have them." "Once you have the first one, you'll want a whole bunch more" and other various statements of the like. I hear the same sorts of things about marriage. "Don't you love him?" "what if he leaves you because you aren't married?" "What if you have kids?" "what about buying a house and having a life?"

Some of these statements, I've recently learned, are technically true. It is different when you have your own kids, but only because of the intense hormone cocktail that hijacks your system and more or less forces you to be nurturing and caring. The brain gets rewired, thanks to that baby. I'm sorry, but I really don't want that. I want to keep my brain working as-is, if only because I have no say in the hormone overdose, and I think that's crap. Just because it's in our nature, and we've evolved to want it, doesn't mean that clear heads should not prevail. I can barely manage to take care of myself, the last thing I need is a biological drive to sacrifice what little good I have in my life for the wellbeing of something I don't want in the first place. Pets don't cause this problem, and I have many.

Some of those statements are just plain hurtful. Telling me that I haven't thought enough about it, or that I'll change my mind (implying that I haven't thought about it at all) leads me to believe that people saying those things don't think I'm capable of weighing the pros and cons. The sick reality is that I've probably put more thought into not having kids than most people do into having them; after all, all you need to have a baby is an accident. You don't need to think about whether or not it's a good choice for you, since it's assumed that it is. You don't need to consider if you are fit to be a parent, because if you weren't fit, you wouldn't be having one, right?

Conversely, I've spent the better part of a decade weighing the pros and cons, thinking over every possibility, both good and bad. I did not reach my decision lightly, and in fact, I used to think I wanted kids, because that's what I was told was what life was about; husband, house, family. I spent years trying to work out how I could achieve my life goals and still have a family, and the more I thought about it, the more I realized that kids just aren't a good fit. I want to travel the world, visit every country, never stay put. The world is a big place, and not experiencing it is a waste of life as far as my own personal view is concerned. (Again, if job, house, family is all you want in life, that's great!I'm not judging. It's just not what I want.) I realized that these ambitions would be nearly impossible if I had a family tying me down. Still, I thought long and hard about what giving up one or the other would mean, and I realized that I would miss a lot more by having a family than I would by making my life complete. The plans I came up with to zip these two lives together were ridiculous and convoluted, and never would have worked out.

By far, the most common and most obnoxious question I get is "what if you regret it?" nobody ever thinks about the flip-side of that question; what if I have the kids, and regret THAT choice? One regret can be fixed through adoption -there are more than enough babies in the world, and I don't need mine to share genetics with me- the other is an 18+ year commitment, regret or no. I've read forums filled with women who regret starting a family. They love their children, but they hate the life that comes with it. That regret doesn't go away just because we wish it would, or try to ignore it. Some people aren't cut out for it, just like some people aren't cut out to be surgeons because they can't stand the sight of blood, or pilots because they fear heights. You can't convince your way out of that; if it's not right, it's not right.

The honest reality is that, commitment issues aside, I just really don't like kids, and trying to convince me otherwise is not going to work. They are loud, which I can't stand both due to preference and due to headaches, they are messy, and I can barely clean up after myself, they are expensive, and I hate spending money and being broke, and they need a LOT of interaction from their parents. I have a hard time setting aside time to train the parrots I inherited, and I think they are neat; I enjoy working with them, and I still can't get myself to do it consistently. That's no situation to bring a child in to.

My partner is on board with my decision, and even his mom is perfectly OK with it (she's also supportive of us not getting married, which is a relief. She told me that, were it not nearly 40 years too late, she wouldn't marry, either) though being that he's his father's only child, his dad's not the happiest. He hasn't said anything about it, though, so he can go right ahead and feel however he wants about it. My partner said that he's getting a bit old to be starting a family, anyway (he's 9 years my senior, which makes him 37, presently) and that he doesn't want to be old and useless when his kids are just hitting the point in life when they are fun to be around. He also seems to realize that, since most of his sibling's kids are my age (talk about awkward... The oldest is 2 years younger than I am, and out of nearly 10 kids, only 2 are under 18 ) he can enjoy them having families, and he can be the awesome great uncle, without having to change his own life significantly to do so. That seems like a pretty awesome compromise for all involved.

Even so, I've been called selfish for not wanting kids, because everyone assumes my partner had no say in my decision. To be sure, if he had said "no, I definitely want kids" we certainly would not still be together, but only because we would want different things from life, and it never would have worked. A relationship, no matter how good, is never NEVER worth sacrificing your happiness. Nobody in that situation ends life content. But that's not what happened at all. I feel my decision is the opposite of selfish. More selfish would be to have them anyway, just because that's what I think I should do, knowing full well it's not a good fit. Children can tell when they aren't wanted, or when they are a burden. I could never do that to a sentient being.

The brutal reality is that my partner is so on-board with my decision that he volunteered to take a day off work to take me to the hospital 2.5 hours away (VA hospital; free healthcare for vets, but lots of driving to get it) and said "don't worry about when, just make the appointment, and I'll take off work." and THEN he's willing to sacrifice sex for an indeterminate amount of time after, until I feel better. If that isn't support, I don't know what is. It probably helps that I played nursemaid when he had hernia surgery.. even removed the bandages and redressed them, because he couldn't stomach the sight. Thank you, mom, for watching graphic surgical shows with dinner while I was growing up; a strong stomach has served me well. He seems excited that I'll be 99.9999999999999999% protected, since I'll still be getting depo injections (hormone control for headache control, and also I don't like the baggage Aunt Flo brings with) even though that's basically the same level of protection I have now, with my IUD.

We both enjoy the DINK life we have now (Dual Income, No Kids); we have the freedom to enjoy our time on earth, sans major responsibility. We can afford to do things that couples with kids can't, normally. We don't have to worry about what to do with the kids when we want to do something, or go somewhere, and making arrangements for someone to come take care of animals is much easier. Does it matter if our goals in life are different from yours or anyone else's? I don't think so..

A couple of pointers for those of you who with kids or who plan to have kids;

It's great that you are doing that, and have thought about it; we need a minimum number of babies every year to maintain the population, and we all appreciate the sacrifices you make to promote the species. But we do have quite a lot of babies, and we certainly don't need more from people who don't really want them. Please respect that just the way we respect you for the choice you've made.

Please don't try to convince people that your answer is the right one for them, too. Most people who have decided not to have kids have given it a great deal of thought. Our society is so focused on reproduction and centers so much around children that it's impossible not to think about. Please don't talk to us as though you know better; you don't. You only know what works for you.

We don't judge your decision, please don't judge ours, even if you don't agree with it. It doesn't matter, ultimately, what you think about our decision, you'll just be burning bridges. You will burn them, not us.

When you discuss reproduction with friends, ask them if they are PLANNING to reproduce, don't ask them WHEN they will reproduce. It seems like such a small thing, but it emphasizes to the person with whom you are speaking that you understand that it's their decision, and that you respect it either way. It also opens up a dialogue. The planning question not only leaves room to change the mind if necessary, but also discourages a lot of defensiveness. It's difficult not to be defensive when everyone is trying to convince you that you are making the wrong choice.

Don't assume that what worked for you, and what you experienced, will be the same for everyone. Keep in mind that many women, and sometimes even men, experience major life changes such as depression and stress with the birth of children, and some people aren't as well suited to deal with these complications as others. Also be aware that this is a major life change, complete with new hormone levels, new responsibilities, new commitments, and new expectations, and the end result is not the same for two people. We each are the sum of our experiences, and you never know what came before now that could change the way someone sees an event.

Keep in mind that what was a wonderful experience for you might be a living nightmare for someone else. If you don't believe me, do a google search for "I hate being a mother"; the stories are heartbreaking. You can judge those people, if you must, but remember; they were, by and large, pressured into changing their minds about having them.

At the end of the day, it's a personal decision. Feel free to discuss it, but understand that the decision was made with great care in nearly every case. If someone doesn't want kids, for whatever reason, great! They shouldn't have them if they don't want them. Everyone is happier that way.

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.

Honesty is always the best policy.

I live my life honestly. I don't mean I'm not a cheat, although I'm not. What I mean is that.. I really have great difficulty being dishonest with people, and whenever possible, I just give the full, blunt, brutal truth. Yes, it causes a lot of problems sometimes, but I've found that the result of not being completely honest is much worse. The following is just one example, a situation which just transpired, of why honesty is my go-to policy for interpersonal contact.

I have the weekend to myself, even though it's a holiday weekend and we had plans; the VA screwed up and didn't set my appointment, so my suppression treatment was interrupted, and I'm about a month, plus or minus a few days, overdue for my injections. Resulting, of course, in miserablemonkey. I had a headache for almost 2 weeks straight (thankfully it has stopped being a constant wake-to-sleep pain) and I've been so edgy that, frankly, it's a wonder I haven't pushed everyone away. Let's just say it got to the point where I started thinking about just how poorly suited campering with a huge family (the BF's, not my own) really was to having a constant headache and needing dark, quiet, and alone-ness. And let's just say I nearly had a panic attack from dread of the situation I was about to be stuck in.

I had an honest chat with the BF, which made me feel even more like crap, when I told him that this just really wasn't a good time. He didn't take it entirely well. The next day I wrote out the letter to loved ones (post before this one) primarily for my own benefit, but also for his, and for anyone else who's life intersects my own. I convinced him to read it, which may have been easier than I thought, because my anxiety flared up, but I told him that my very good friend felt like he understood my situation better after he read it, and I think that was enough convincing.

I sat with him while he read the 5-page document right off my blog, just like you can. I would give him special treatment, but I feel that would be singling him out, and I don't want to do that; I don't blame anyone for how they respond to my conditions, it's just a shit situation for all involved. I think presenting it as "I wrote this thing that might help people understand my pain and what helps and doesn't, and I'd really appreciate it you'd take the time to have a look" did the trick. There were a few parts I think he skipped, but for the most part, he sat and read it like a good, supportive, partner, and afterward said "a lot of those things... I guess.. I really had no idea..." He looked about ready to cry.

We then revisited the conversation regarding the family trip for July 4th. I explained, honestly, that being off of my treatment really screwed my world up, even though my treatment is suppression and reduction, not a complete symptom negation. I explained that, even if I did go, I would just end up spending the time alone, resentful, and in agony, with no hope for escape if necessary from the noise, the smoke smell, the lot of it, with the nice bonus of a couple dozen people being unnecessarily concerned about me. I explained that it was just really bad timing, and that although I want to go, it's just not a good idea, and I have to accept that that's going to happen sometimes, even though I don't like it.

He took it a lot better this time around, and we even managed to have a frank and honest discussion about which of my failings were most annoying. I want to do what I can to make everything as easy for my loved ones as possible, so I'm really open to criticism of that sort, as long as it's not phrased as an insult or complaint; I'm still human.. I get defensive. It happens.

We've now set tentative plans for after my treatment has resumed, and I feel like he understands a bit better that, when I say I -can't- do something, it's not an exaggeration or excuse, but a fact. I think he also understands a bit more, now, that I can't control or predict when it will be bad. The best I can do is deal with the symptoms when they flare up, and sometimes that means being a flake.

He also seems a bit more forgiving about my level of productivity (or more specifically, the level of my non-productivity..) and motivation, and I think it might be a bit clearer that I really do make an effort. As a bonus, my habit of listing my daily accomplishments makes a lot more sense, now, with the understanding that I'm sharing to be clear that I did what I could.

We've been together long enough that this should have been discussed a long time ago in this way, but... neither of us is really all that great at talking.. My anxiety flares up, and I can't get the right words to come out, and he just tends to be non-responsive (I think that sort of conversation just makes him really uncomfortable). We should have covered this stuff a long time ago, and perhaps we wouldn't have had the friction we have had.

Either way, regrets are useless; we have addressed it, and perhaps the results will be long-lived. Perhaps not.

If you haven't yet, I definitely recommend having this sort of conversation with your partner(s). It's really amazingly hard to do, until you've done it... then you just wonder why it took you so long.

The things that need to be said the most tend to be those most difficult to discuss.

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.

Re-launch

I've been thinking lately that what I'm doing just isn't enough.  I gave this blog a rest for a while because I didn't think it was helping, but I don't think I gave myself enough time.

I'm not going to try to update on a schedule, I think that was my problem, and life just isn't that predictable. So you will now get updates when you get them. If that means I don't post for an entire semester because I just don't have time, well so be it, that's just the way it is.

I'd like to expand the topic to include coping with chronic pain and illness, as well, since ultimately, these things really do accumulate into the mess that is my life.

I'm starting to come to terms with my limitations, being not entirely-abled. I've been broken almost as long as I can remember, but I was in denial. Chronic health problems are surprisingly like death (no this isn't going to be morbid, bare with me). We in pain have lost ourselves. The person I used to be is gone. I look the same,  know all the same things, but I don't have the same capabilities I used to; I'm not who I was.

For me, this started so long ago that I don't remember who she was, only that she's gone. I'm still in mourning; she was very close to my heart.

It's true that chronic illness leads to the stages of loss; how could it not?

Either way, I'm trying something new; admitting when I can't do things. I'm also trying really hard not to let that change the way I see myself.. I didn't ask for this condition, nor the limitations and hardships that come with it. I got saddled with it, and there's nothing I can do about it. That doesn't mean I have to like it, and that doesn't mean I have to give up. Inability has always been merely the marker of a challenge, and I don't see that changing, but I'm not going to beat myself up when I can't get out of bed to wash the dishes, and I'm certainly not going to hold it against myself if I can't go out with friends (not that that ever comes up, since none of my friends are local, but that is entirely beside the point)

It sucks but... such is life.

So I'm moving on from denial.. Maybe that explains why I've been so angry lately.. about everything.. stupid shit.. Even I've noticed it, without being told, so it's pretty bad.
I think I'm going to skip a few steps of grieving.. I don't see any application for bargaining.. I guess I might try to make deals with myself, but I already know I'm too fickle to follow through, so probably not.

I did already take care of depression, though... boy did I.. a suicidal period around the time my mom died and I got away from psycho abusive stalker ex BF who said I was making up my pain... my shrink is confident I have PTSD now, so that's cool... Managed not to do anything in the service that would cause it, and then bam, couple years after discharge.. figures..

It's all good, now. I still have bad days, of course, and I doubt that will ever end, since my doctors don't hold much hope of full recovery (they don't even know what's causing my pain), but it doesn't define me anymore, and I can enjoy things.

Maybe I'll be done with this grieving sooner than expected.

Either way, I'll be posting again.. It might help, me or you. Both are good.