Another Day, Another Monkey Wrench, Solutions Welcome! (gibberish and rambling are included!)

 

I am not sure why I can’t seem to remember that I am absolutely powerless to control pretty much anything, especially the whim and will of other people or the weird Kansas weather or (to a degree) how my body will react (generally dramatically, whichever the direction) to a big medication adjustment or how my frizzy-ish hair is going to handle the day’s vacillation in humidity.

Here we are, another week has gone by, there have been ups and downs, but I am surviving, and am in fact surviving in somewhat decent humor.  A bit over a week ago, things were getting a bit too roller-coasterish with my mood, and my Seroquel was increased (for the second time this month) and I really thought that was not going to affect things (overall), too much.  I was, of course, terribly wrong and while it has given me moments of extreme grogginess, the really irritating thing is that I am just extremely hungry at all times, no matter what I have just eaten or what else I have done that day.  In addition, the sugar/carb cravings are back and I really do put a lot of that on the Seroquel.

Some of it is me, though — me not handling anxiety well, me not handing “change” well, me just reverting to slacker (eating) ways.  The other problem the past week or so has been that I have not been able to do my normal exercise routine, partly because of bad knees, but mostly because of serious toe infection (both big toes) and extreme ingrown toenails.  My primary care, thankfully, decided that now was the time to pull both toenails.  They  have actually been giving me trouble for years, so in a sense, I am happy to start over with a fresh nail bed, but it was quite painful and remains a bit more than slightly painful, the dressings are not easy to change, and I have had to back off of my daily trips to the pool to do aqua aerobics.

I am on Day One of no exercise, and one would think I would be faring better, especially considering years and years of slackerdom and the past year in which I barely moved from the couch.  No lie, however, I am going quite stir crazy and have been bouncing from project to project to project.  Nothing is satisfying the itchiness inside my brain, and to keep that itchiness company, my stomach is constantly complaining that it be filled.  It is a miracle that I am not hugely over-eating my plan calories allotment, but the desire is definitely there.

I am going to have to figure out some more creative ways of telling my cycling brain to shush, of telling my growling tummy that it is not in fact starving, of settling the  feeling in my legs of wanting to bounce around, and so forth.  I am employing all of the usual remedies, like chair exercises, doing new crafts, working on special projects for others, reading, talking Kizzie and Lucy’s ears off, browsing the internet, trying to organize different spaces.  I think I need something totally different, and I have thought about it all day and decided that maybe YOU have the suggestion that I am needing.

So please, do tell, what amuses you when you feel similarly?  I am pretty open to suggestions, provided it includes nothing illegal, smoking cigarettes, or imbibing in any kind of mood-altering substance.  Let’s hear it!

New Physical Malady Intersecting with Existing Mental Illness Equals a Flare on Both Sides

I know I have blogged briefly about my skin issues and recurrent staph infections and the like, and now I have an official diagnosis:

Hidradenitis Suppurativa

You can read all about it in that link, or you can just know that it is a very painful autoimmune disease, with a genetic component, has no cure, and basically a person with this disorder has sweat glands that never developed correctly and is plagued with boils, nodules, and blisters that develop most often in places where skin rubs together.  It is considered a rare disease, there is much conflict about how to treat it (from surgery to antibiotics), and it is really hard to find a doctor that knows much about it.  There is a great deal of stigma around the disease, as misinformation abounds and let me just say that it is NOT caused by poor hygiene and it is NOT caused by being overweight (although some people anecdotally find relief by going on keto diets).  It is believed that everyone has different triggers for flares, and so far I have found that my main flare is stress.  That is a relief, of course, since heaven knows I have no anxieties or great fears or stress.  Hahahahahah!!!

I have actually be unknowingly dealing with this disease for years, it has just now reached the point where it is much worse and is needing treatment.  I learned of the diagnosis a week ago, and, rather than being disappointed in having yet another label to my name, it is actually helpful because now I can research and pinpoint and see what might help me.

I have my primary care doctor making a referral to the premiere teaching hospital in my area, basically the same place where anyone goes when they have a rare or serious disease and is not receiving adequate care locally.  I am hopeful to have an appointment within the next few weeks.  In the meantime, I am just trying to minimize pain, not aggravate things, and learn all that I can.

This flare in HS symptoms has created a bit of a flare in my depression and anxiety, which were on the uptick before I even knew this was what I was dealing with.  I am trying to stick to building structure and building mastery, as in keeping a schedule and trying to do new things out of my comfort zone.

LarBear has not been well lately, and it is becoming clear to me that I need to at some point learn that YES I CAN go into a grocery store by myself or go into a gas station and pay for gas or all of those little tasks that he takes care of so that I can pretend I don’t exist in the world and keep me from interacting with anyone.

I am midway through this current round of DBT group, and have discussed with my group leader, and I am going to at the very least take a break after it is done.  I have about six more months in this module, so its not coming to an end anytime soon, but I really feel the need to leave myself the possibility of more sessions in the future (insurance limits to four) and I am also getting slightly bored with things.

I have been having the hardest time leaving my house, and I think part of that stems from the fact that my house is so comfortable and clean and chaos-free now.  I do a lot of sitting on the porch and listening to music and writing, but have not been doing much crafting.  I really feel as if I have no talent whatsoever and I especially feel like I am wasting my time in art therapy.  Ok, I’m painting, but I’m horrible at it.  I am a failure at it.  I really just don’t feel a creative bone in my body other than writing.  At least I still have writing.

I went through a meltdown earlier this week because I decided that I was not entitled to the depression I have been feeling.  I mean, life is GOOD, I just feel so very sad.  Very, very sad.  I can’t explain it, and I can only hope that working on building structure and building mastery and trying my hardest to stay busy will bring me out of it.  That, and my med doc has given me a tiny dose of an antidepressant that is an SNRI.  Just hoping it doesn’t make me manic.

So, that’s life for now and I’m going to keep on living it.  My survival rate to this point is 100% and I intend to keep it that way.

I Have A Plan

I vacillate between trying very hard to use DBT skills and basic coping skills and all of the “tools in my toolbox” and throwing my hands up in the air.

The Rosa of the past didn’t believe in recovery, and the Rosa of the current still isn’t sure about “recovery” from mental illness, in general.  Do I think things can get better, yes.  Do I think they can stay that way, not really.

After my therapy session yesterday, I have come away with a few goals.  Goals that the Rosa of before would not have meshed with.

They are, in no particular order:

1) Daily hygiene every day, plus a bonus if I can put on makeup and try to pretty myself up.

2) Sun lamp 30 minutes, two times a day.

3) More time out of the house, doing what, it really doesn’t matter.

4) Eventually get back to the pool.  The staph infection issue is ongoing, so I can’t do much about this right now.

5) Stop thinking about the zebras.  You know, the zebras, the constant and negative thoughts that come from the brain.  Try replacing the zebras with a giraffe, or an elephant, or maybe a cute teacup pig.

I have come to the conclusion that I can’t fret about my weight too much at this point, because it is clear that it will be an extra-supreme challenge in which I may or may not have to make serious decisions.  The plan is to continue eating right, with small meals, and try to increase fruit/veggie intake.

Above all else, I will continue to avoid negativity and will cut it out of any corner of my life in which it will be lurking.  This may mean cutting some people out of my life, but so be it.  I actually went through the million blogs I follow and unfollowed some that are simply always so negative without even a hint of positivity or solutions that may be found.  Bloggers that wrote all the time about things that were triggering to me were deleted, too.  I hope someday I can come back and read some of those, but I simply can’t right now.  Chances are, it’s not your blog I stopped following.  Most of those people don’t read me.

I am going to have to do something different with jewelry/crafting, and I’m not sure what that is, but I’ll think of something.  I don’t think I am going to meet the October 14th deadline of having pieces in for the holiday show, but at this point I think it is more than I can manage.

I may be starting an adaptive yoga group that my art therapist is trying to get together.  I am excited about that.  As in, yoga I can actually do, maybe seated at a chair or in some other fashion.  I really hope she is able to get some numbers together so I can start that.

Day by day, broken down into manageable chunks, I will get through Fall, Winter, Hell of Winter, Spring of Winter.  I will because I always do, and there is no point in giving up now.

The Ten Things I Can’t Seem to Admit to in Therapy

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This will end up being a list post, but I want to first interject that it is hard as hell living with mental illness and every good day should be celebrated.  Don’t get me wrong, there HAVE been good days, and there will be more.  Right now, what I am trying to purge from my system is all the negative stuff that I can’t seem to talk about in the place where I need to the most:

1) My nightmares have come to the point again where I am terrified of sleep, terrified of bed.

2) The stuff of nightmares keeps me from wanting to leave the house…like, ever

3)  I have not seen the inside of any type of store, including even a convenience store, in over two months.  I have not even tried.  There are people in there, you realize.

4)  I have been hiding my crying spells.  From my therapist, my med doc, my art therapist, LarBear, my mom, my dad.  I know what crying spells mean, and I don’t want anyone to know it is happening at an alarming rate at this point in time.

5)  I absolutely cannot manage without Klonopin at scheduled times throughout the day.  I keep trying to skip it, and I keep having breakdowns and am told to take my Klonopin.

6)  I am stuck with my jewelry.  It’s not fun to make, to plan, to do.  I feel absolutely defeated by the lack of activity on my Facebook page for it, and I end up giving it away because I don’t think it is good enough, anyway, to sell, and neither, apparently, does anyone else.

7)  I am very close to giving up on some various people in my life.  I decided a while back to no longer be in contact with my ex-step-father.  I am very close to that in a few other relationships.  I am tired of caring and not getting caring back.

8)  I don’t feel like there is a safe place for me to go whenever (if) home begins to feel unsafe.  They use the crisis house as an overflow for social detox — the award for fuckhead of the year goes to whoever made that decision, because if I am sick enough to be there, I am too sick to not be taken advantage by one of those addicts.

9)  My weight is at an all-time high, and I am not sure what else to do.  Sure, I need to move more, but I eat quite healthfully and smaller-size portions, and Seroquel (my psychiatrists guess) or the tides of the moon or terrible chemistry makes me gain ten pounds if I so much as look at a cheeseburger.  I have completely stopped bingeing, and I am gaining weight.  There seems little fairness in that.

10)  I get tired of feeling depressed constantly, so I often put on that mask that says everything is fine.   Dear Mental Health Gods:  I am really, really tired of having to do that.  Most things in my life are going swimmingly right now, can I please catch a break?

Refraining From Taking the Weight of the World Onto My Shoulders

It has taken me most of my life to realize that the problems of others, the problems of the world, the problems of problems of problems past, are not necessarily mine to carry every day on stooped shoulders.  Part of getting healthier with Dialectical Behavior Therapy (DBT), is setting boundaries.

Ok, it’s not just part of it, it is CENTERED around making healthy boundaries with the people you come into contact every day, with people you don’t even know, with the world.  I have realized over the last year of DBT that, in some of my personal relationships, I would personally take on the weight that is on others’ shoulders and make it my own.

Not only is this completely unnecessary, it is damaging to the relationship and to the other person, as well as (hello!!) damaging to the self.  If I have a friend who is struggling, it does neither of us any good if I spend mass amounts of time worrying about how to “fix” that person’s problem.  Chances are, that person doesn’t even WANT me to “fix” the problem, she just needs an ear.

Very rarely in life should we take on others’ problems as our own and go about “fixing.”  For one thing, my “fix” to your problem, maybe be a “fix” that you can’t tolerate or can’t sustain in the long run.  What I have learned is that, while it is fine to give advice from time to time (depending on the subject matter and how close you are to said person, to name a few restrictions), what is much more important is building that other person up, regardless of what exactly they are going through, and letting that person know that you support them and that you believe that things CAN get better, and perhaps most importantly, that things are not necessarily their fault or that they are not a “bad person” because things are going a certain way.

People need validation, reassurance, a kind word, a loving touch — not for you to solve their personal crises, or even necessarily to make suggestions as to how THEY might going about solving their personal crises.  It is very important to practice nonjudgmental stance with peers, family, romantic mates, nearly everyone.  You might be thinking in your head, “how did this idjit get into this pickle?” but of course, you saying that out loud is going to help no one.

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And if you think that over and over in your head, and judge a person’s actions or inactions about a particular matter, all sorts of gross and inappropriate judgements may sow themselves into your brain, and that will make supporting this person all the more difficult.  It is only very recently that I had an instance where I thought I was “helping” someone with their problem, and it turned out that they very much resented my advice and insight into the subject.

I thought by giving advice as to what  would do in a situation would somehow fit their somewhat similar situation, but people are different, inside, and out, and MY solutions would not in any way work for the other person as solutions..  People are simply too different.  This is when I realized that, what I needed to do, rather than give direct advice about a situation, was to keep my opinions to myself and be there for the person only in a validating matter.  Validate the other person’s feelings and fears, help them to feel not alone (but not by bringing up my own somewhat similar issue), and most important, to stop judging how the other person was handling the situation and to turn the mind toward loving kindness and away from judgment.

In the end, my cessation of giving this person concrete advice and stopping voicing judgement likely saved the relationship.  Things will not always be so clear, circumstances will not always be so dire, repercussions not always so large.  I am not in any way saying to never, ever give advice to another person about something (granted, as long as you know your correct facts) they are going through, but what I am saying is that most people, myself included, benefit more from having another person to validate, listen, provide a shoulder than from being directed on what it is exactly they should do next to handle the situation.  Building people up instead of tearing them down takes conscious thought and hard work, but is very worth it, for all parties, in the end.

Chronic illness and the right way to respond:

 

 

Making Choices About Who to Give Love and Time To

At some point, I made up my mind to stop projecting my thoughts of self-hatred onto other people.  I mean, I’ve made up my mind to do that a few times within the course of my life, but I have really committed to it, at this juncture.  I had grown tired of feeling belittled and invalidated by the comments of others, and found that, while sometimes the other person was at fault, sometimes it was all in my head.

Even keeping this in mind, there are times in our lives when we have to go through the people in our circle, and evaluate who is helping us and who is hurting us.  Sometimes it is the person we least suspect who is actually hurting us.  Often it is a person we don’t think of often, who we don’t talk to much, or just aren’t that close to anymore who is injecting poisonous and negative thoughts into our lives at every random encounter.

This has been the case with my life, I have found.  I have shored up my defenses and boundaries, where it really was lacking and was necessary, but found that I had a few little relationships with others here and there, some I thought very important, some not so much, that I have recently realized that I would simply be better off without.

Last week, I went about the process of figuring out how to terminate the peer mentor process that I have been going through.  After examining what happens at our appointments, thinking about what positives this time-consuming activity brings to my life, I realized that this program is not a good fit for me.  Very little productivity comes out of these meetings, and it is all too clear that my peer support person is working on nothing with me, and is in fact harming me with some of her suggestions.

She suggested I quit DBT groups.  Wow.  Really?  I mean, yes, they drive me crazy, but they are one of the main things keeping me going.  She doesn’t take medication, and is somewhat anti-medication, as well.  She has a negative view of LarBear, and is very opinionated and judgmental.  I just don’t feel I am getting anything positive from the relationship, and in fact I generally feel more anxious and worse in general (about myself) after I see her.

So, I made the decision after speaking with my DBT therapist and my regular therapist, and QoB, LarBear, so on and so forth.  I am no longer going to subject myself to these appointments just because I feel like I *should.*  I am also not willing to be in contact with someone who is flailing along, while trying to help me.  If you are a peer mentor, you should have your life at least somewhat together, you shouldn’t be laying out all of your own problems at each meeting, and I shouldn’t feel like I am the one giving you advice at all times.  I don’t feel comfortable in this relationship at all, anymore.  It is therefore over.

And that is exactly the problem I am having with a few of the smaller, more acquaintance-type relationships in my life.  As if I have explained myself over and over, and the other person isn’t willing (or able) to change.  And in some cases, I just feel like the other person doesn’t care, and I tire sometimes of chasing my tail to make other people happy.  I need to chase my tail to make myself happy, not to benefit other people.  Sometimes there is only so much you can give of yourself to others, and if they don’t give a little back, you can’t keep giving yourself, over and over.

One of the biggest parts of my mental health road right now is to surround myself with people that nurture me, not those who hurt me.  I am putting distance between myself and other people for a reason, and one of the biggest things, is if you never reach out to me, I might just stop reaching out to you.  What happens then?  Change has to happen, is what happens then, and if no change happens, then I might have to give up on some things that I thought could be good, because it turned out that they couldn’t.

 

Feelings of Okay-ish-ness

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I think this is part of the human condition, rather than a function of mental illness (or wellness, for that matter).  We try so very hard to maintain a baseline, and sometimes it floats away from us, due to circumstances not within our control.

Let’s face it…very little is within our control, and especially others’ behavior and inactions and lives — those are exquisitely beyond our control.  And that little fact can drive me a bit mad.  I have the tendency to want to loop my lasso over the horns of every bull and drag it to the ground, and this is simply insanity and I cannot sustain it over the long haul.  I can (and do) work on my own issues, but I cannot *fix* or even (in most cases) alter the path of others’ behavior.

I have been quiet for the past couple weeks, simply living life, and struggling to live it on the terms which are required of me.  There is so much suffering around me and I want to reach out and heal it, but when I do, I often leave myself with scars.  I cannot help you, without being affected myself, and I am not always in a position where I can afford to be affected by anything other than my own complicated existence.

In the past few weeks, my focus has been on living in the moment, general mindfulness, willingness, practicing opposite to emotion.  In other words, Rosa is doing some hard work right about now, and sometimes when I am doing that, I have to disappear a little bit.  Because words are hard to come by, and there have been other challenges that I haven’t wanted to put a spotlight on — very real, very concrete and physical challenges that I don’t know how to wrap my own tired mind around, nevertheless explain them to someone else.

I miss blogging when I don’t do it, but it is necessary for me to shut down, or maybe even reboot my brain every once in awhile.  I haven’t been talking about it, but in the past month I have been dealing with a new mental health diagnosis, the confirmation of a new chronic physical illness, a septic system that is no longer working, the death of an aunt, worries about family members, and with all the recent rain, a basement that is full of water and must be pumped every couple of hours (and the ruin of my HVAC system and hot water heater, with the first wave of rain).

A lot going on, yes, but I am managing because I am living in the moment and not allowing myself to think too far outside of where I am right now.  I also don’t want to feel like I am complaining, because I really do have a great deal to be thankful for.  The challenges keep pouring in on my head, but I continue to have hope and faith that things will work out for the best.  That fact, that I still have hope and faith even with the storms of drama around me, is near-miraculous, as my general tendency (once-upon-a-time) would be to catastrophize and live in panic.  I don’t want to do that anymore, and I actually refuse to do that anymore.

some days are betterwill write more about the new physical and mental health diagnoses at some point, and at another  point I might take a moment to complain about my failed septic/HVAC/basement disasters.  For today, though, I just want to be grateful for things like my LarBear, family, friends, and for my new-found sense of hope and ok-ish-ness.