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.
Sunday, July 5, 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
Friday, June 26, 2015
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.
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.
Friday, October 3, 2014
When things don't go as planned
Things almost never go as planned, do they?
The more you want to get done, the less likely you seem to be to actually get things done.
The more you want to get done, the less likely you seem to be to actually get things done.
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