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?
Showing posts with label suffering. Show all posts
Showing posts with label suffering. Show all posts
Wednesday, July 15, 2015
Wednesday, July 1, 2015
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.
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.
Saturday, June 27, 2015
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.
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.
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.
Labels:
Chronic pain,
family,
friendship,
headache,
help,
life,
love,
relationship,
suffering,
support
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