Still trying to find a map to recovery

I have dealt with mental illness of one kind or another since I was 11. I have had good days, good months, good years. I have also had bad. But I have always recovered to some degree and was able to continue on. Looking back on it - and from what I can remember, which is always iffy - each time I had a breakdown I didn't recover as fast or as completely. And this time I can't seem to find any sort of path to recovery.

It is frustrating, to say the least, but at least I'm finding some answers. First, my physical health has declined drastically over the years and it ties in to my mental health. My inability to recover physically is seriously impeding my ability to recover mentally. Of course, the physical part is just as frustrating. I have been in constant pain for at least 25 years and I was able to deal with it before. Why is it so debilitating now?

I found another clue in a Facebook post this morning from a schizophrenia information site. It stated that studies have found that recovery is more difficult after each relapse. There may be progressive structural brain changes, which can make medications less effective. Thought processes change because the brain has changed and it makes it harder to return to "normal." Basically, every time I have had a breakdown there has been more damage and the process needed to recover becomes more obscure.

I am terrified, to say the least, to see what the future will hold. I don't even know what recovery means. I cannot see a future where I am able to live on my own again. I cannot see a future where I don't have a caretaker, and if anything happens to my Dad I don't know who that would be. The last time I was in the hospital (back in August), we put together a plan of baby steps that would get me functioning better and get back out into the world again. That totally hasn't happened. My social anxiety seems to be worse and I don't know how to make those steps without someone holding my hand.

I can't find the path, and no one else seems to have a map either.

Never honest

First of all: Update from that last post in August. I ended up in the hospital. I went for my usual appointment with my therapist and I was in such bad shape that she actually drove me to the ER. I was in Behavioral Med for a week. While I was there, my mom collapsed and also ended up in the hospital. Fun times all around.

I am now on a new anti-depressant and new anxiety meds (yes, that's plural). That, of course, keeps triggering my medication paranoia. I have some meds that I take 3 times a day and some every 4 hours so I always seem to have a "take meds" alarms going off on my phone. I had to add which medications to the alarm because I was getting confused.

In some ways I'm doing better. The new meds definitely work better. Plus one of the anxiety meds helps with the fibromyalgia pain, so that's a bonus. The suicidal thoughts are gone and the voices are quieter. I have been able to do some things I couldn't before, like get myself to see a new OB/GYN and a dentist, although the dentist left me a nervous wreck. Still, I was able to do it.

So, I promised my psychiatrist that I would be honest with him from now on. If I'm depressed, stressed, suicidal, anxious, whatever I will tell him. But the truth is I have never been completely honest and I don't know if I can be.

I have admitted to severe anxiety. I have admitted to social anxiety, but I haven't been honest about why it freaks me out to be around people. I can't bring myself to admit that I can feel the pressure of their thoughts all around me and if they get too close their auras brush mine and it hurts. I have admitted to hearing voices and even admitted to hearing them all the time, no matter what. But I can't bring myself to tell anyone what all they say because it feeds into my delusions - or what they would call delusions. I haven't decided yet. (The voices tell me I'm perfectly fine so I'm good, right?) I have never admitted to my delusions. I have never told those stories and I don't know if I ever will. They are so integrated into my mind and my memories and my beliefs that I'm pretty sure it would destroy me if my psychiatrist or my therapist told me they weren't real.

Of course, there is also the fact that if I can end up in the hospital just from the anxiety and such, what would happen if I admitted to the delusions and the feeling of other people's thoughts? I am terrified to find out.

I don't feel safe

My mom has been really bad the past couple of days - again. I tried to get my dad to take her to the ER because she wasn't lucid and wasn't following conversations, but after a nap she seemed better so it didn't happen. Today he said she was better. She is more lucid. She if following conversations. But she still wet herself and had to take a shower twice. I am scared to death to be left alone with her again.

And the fact that I started this entry with an update on my mom highlights the real problem: I am still putting her first. She is still the priority.

This morning I had trouble sleeping. My brain wouldn't calm down. I was shaking like crazy and I had a moment of disconnect - that's when I can't decide if this world is real or not. Even after I took my morning pain meds and dose of alprazolam, I still couldn't calm down. I had to take a second alprazolam within an hour of the first - which is REALLY not a good sign - and I'm still feeling off balance. I feel like I'm coming apart and need to wrap myself in duct tape to keep me together.

Epiphany time.

I have known deep down for quite some time that I need to increase or change my psych meds. Yes, I have been feeling physically ill and that has added to the stress, but I am just not keeping it together. Part of the reason I've resisted is that change scares me. At least I know what to expect from the meds I'm on now. I have had bad reactions to so many medications that trying something new is just terrifying.

And that brings me to the real problem: If I felt safe at home, I wouldn't have as many issues with switching meds. But I don't feel safe. My parents don't even notice if I'm having an anxiety attack half the time, let alone when I'm hallucinating or disconnecting. And that's when my mom is doing well. If I switch medications, I have no one I can trust to notice if something is going really wrong.

Hell, they don't even notice anything is wrong right now. I've told them straight out that I'm having problems, but I look OK and can still feed myself and I'm not peeing in my chair so I must be fine. If they can't tell things are wrong now, how can I trust anyone to notice a bad medication reaction? How can I trust that I can get help?

The answer is that I can't. I just don't feel safe, and so I am not getting myself the help I need. Of course, the easy answer is to check myself into the hospital while they play with my meds, but that would leave my mom completely unsupervised, which just cannot happen. I am at an impasse and I just don't know what to do.

My illness is NOT invisible

I read an awesome blog entry today that was shared on Facebook by NAMI. It was about how mental illness is not invisible as everyone says. People just don't know how to spot it or don't bother to pay attention. I won't post the entire blog, but you can find it here:

Mental illness is not an invisible disease.

It really brought to light that all of my so-called invisible illnesses really aren't. When my schizophrenia acts up, I tend to mutter to myself and I flip my fingers together. I will also have trouble following conversations or understanding what people say. When my anxiety acts up, I have trouble talking and tend to rock back and forth, whether I'm sitting or standing. Or I'll grip something hard and focus on one thing and ignore everything else until I get it under control. I can be unresponsive for several minutes to half an hour. THIS IS NOT INVISIBLE! It is actually pretty obvious, but no one knows what to look for or they just ignore it.

As for my physical illnesses, they aren't really invisible either. They say fibromyalgia and autoimmune diseases are invisible, but they really aren't. I walk with a cane and with or without it I tend to lose my balance and use walls and counters to navigate. I limp and tend to drag my left leg a bit, especially if I am walking a lot like at a grocery store. My hands shake and I have trouble writing or doing small, manual things like get change out of my purse. I get rashes on my skin and arms if I'm in the sun too long so I wear a big hat all year round. These aren't glaring signs of illness like being in a wheelchair or missing a limb, but the signs are there if people would just bother to notice.

I think we need to change our labels. These aren't invisible diseases, they are ignored diseases. They are prevalent in our society, but no one wants to notice. Just like people get uncomfortable and don't know how to act when someone enters the room in a wheelchair, they don't know how to act around us, either. It is a societal stigma against illness in general that is the problem.

Being undermined again

I have been having a lot of issues lately, obviously. There is so much going on in my head it's hard to keep things straight. And I am TRYING to get myself in to see a doctor or two to see if anything can be done to help with my physical problems. The problem is, I have to keep rescheduling.

It is a major issue for me to make a doctor's appointment. I have a major paranoia that doctors are just hacks, none can help me, and the medications they give me are poison. I fight my own instincts every single time I take any medication. So for me to decide I need to see a doctor and actually make an appointment is a big deal. Then I fret over it, fight myself not to cancel it, and once I'm there just being in a medical setting is a major anxiety trigger.

Well, I know I need to see a doctor. I think I mentioned in the last post that I finally figured out that my primary physician really was doing nothing for me and it wasn't just my paranoia. I will see a new doctor the first week of September. In the meantime, I finally got up the courage to make an appointment with an immunologist, since most of my physical problems. are immune and autoimmune related. I made the appointment, put it on the family calendar, and got my paperwork together.

Then my mom came along and made a doctor's appointment for 45 minutes before mine. Yes, she needed to see the doctor, but my appointment was the only thing listed for that day. She could have chosen another time. My appointment had been on the calendar for 2 weeks and suddenly it was impossible. In my family, mom's appointments take priority, no matter what (an issue that gives me a major inferiority complex, by the way). I am unable to drive right now and my dad has to be with my mom at her appointments because she needs someone there who will remember what happens. It was physically impossible for me to make my appointment. There were no apologies.

I called and canceled my appointment and actually convinced myself to reschedule instead of just canceling. Again, it wasn't easy. I made it for a day that was completely open, just like last time. I put it on the calendar. I told my mom about it.

My appointment is for tomorrow. I got up this morning and looked at the calendar and she had done it again. She has made an appointment for half an hour before mine. We are both really sick, but I hide mine better. So she gets priority. I am going to have to cancel again and I don't know if I will be able to get myself to reschedule.

To say that this is causing me major issues would be an understatement. My entire family is so brainwashed by my mom that we just drop everything to take care of her. And she expects it. She is genuinely surprised and upset if or when I say no to her. I seem to be the only one who has broken free of it.

And I have voices knocking around in my head that are - well, I'm not sure if they are making it better or worse. Some are telling me I am just as important, maybe even more important than her. One went so far as to say that she will never change because to change one has to be self aware, and she's barely sentient. Others blame her illnesses and other problems on all the poisons she takes (she is on more than 20 prescription drugs) and others say she is so used to being the "baby" that she thinks she can - and does - act like a 4-year-old.

Regardless of what the voices - or anyone else - says, I am coming in a far second when it comes to getting cared for. I have learned to hide my pain better. I have learned to hide the fact that it feels like my head will explode from the voices and the stress. And because I don't look or act as sick as my mom, everyone assumes I'm doing OK. But I can't bring myself to show it. I will NOT act like her. And I am sick and tired of being expected to take care of her or play into her victim mentality. And I am tired of being treated like my problems are less than hers just because I don't whine about it. I need help. I am trying to get it. But instead of helping she is undermining my efforts over and over again.

And the damn breaks - almost

I haven't been on here for way too long. I was somewhat stable for a while and I can tell my therapist just about anything so I guess I didn't feel the need.

Well, things are changing. I am NOT stable. We are slipping down the rabbit hole again and I quite frankly am scared. I have always heard that when a person is going insane, they don't know it. That is a lie. I can feel every single moment and it is terrifying as hell.

I guess I never was as stable as I thought I was. I still never leave the house unless I need to. I can't stand chaos. I freak out if all of a certain kind of spoon is dirty (I will clean one of the "correct" spoons before using a different one). I have to use Lysol in my bathroom or on the couch if someone else has used either. No, I really haven't been stable, but I have been trying to find a new baseline, a place where I can say "when I feel like this, things are OK".

Then stress really started to build and I had nowhere for it to go. Or, at least, nowhere I felt comfortable letting it go. I don't really want to become an angry, screaming toddler throwing a temper tantrum. But that's how I felt - how I still feel. It's like I talk and it just goes off into space somewhere and no one really hears it. In typical fashion, my family deals with what they don't understand by ignoring it. Oh, I had an anxiety attack and started crying? Just ignore her until she calms down. Then everything is OK.

Months ago I started to get sick physically, more so than my normal fibromyalgia/arthritis crap. I had constant diarrhea and just felt weaker than normal. The food that I ate just went right through me and I just felt like crap. (BTW, I don't know if I'll ever be able to eat salad again after pooping one out basically intact. That is an image that I can't get rid of.) I went to my doctor and he acted unconcerned. He first thought it was because of having my gall bladder removed, even though the problems started months after that had happened. He gave me a medication to help get excess bile out my system, but it just made things worse. He suggested Imodium, but it did nothing at all. He then gave me a prescription that was basically Imodium on steroids and it actually made things worse. I had abdominal pain and cramping. I called and said it wasn't working, and the response was to keep with it. I left a second message stating very plainly that it not only wasn't working AT ALL but was causing abdominal pain. The response was to only use it if I was going to leave the house (even though it never worked at all) and that was it. I guess I was just supposed to live with it.

He never ran tests. He never gave me any options. He obviously didn't understand or really listen to my messages. It was then that I realized he really hadn't done much for me for years. He diagnosed the fibromyalgia in 2005 - and did nothing. He was quick to diagnose the gall bladder infection, but that was something rather common. After years of joint pain he diagnosed the osteoarthritis. He never explained how he knew it was osteo and not rheumatoid or psoriatic arthritis. And he did nothing. When I really pushed he gave me stronger pain meds, but he never ordered anything besides routine blood tests and made the note "results are what we expect". WTF is that supposed to mean?

So, I dumped my doctor. I found a new internist (he is actually the one my mom sees. No stress there) but there was a month's wait before I could get in for a new patient appointment. So I have been dealing with things myself the best I can. The stress from feeling like crap (pun intended) was building. My mom started having issues and I got to play Cassandra again. She finally went into the doctor and it was a kidney infection and maybe more. A friend came to visit, which was wonderful but stressful. My older sister and two of her kids came to visit, which was wonderful and stressful. And the stress kept building. I just felt more sick. I couldn't eat. My mom was acting erratic like she always does when something is off and I just couldn't take it any more.

Five minutes on Google game me 2 reputable sources saying that people with IgA deficiency like me are prone to digestive infections (why couldn't my doctor have done that?) so I started self-medicating with herbal garlic. It helped a bit, but I was still having issues. I told both my parents that I was half an anxiety attack from ending up in the hospital again, but there was no real response from them. (Yes, the name of the game is DENIAL). My therapist was out of town and I was left on my own. I sat down and reviewed my options. I could let the dam break altogether, lose my touch on reality and end up in the hospital. Or I could open a floodgate: take enough alprazolam to make the anxiety go away (not necessarily suicidal, but close); start cutting again to relieve the pressure; or open the box that kept the voices at bay. I chose the last option.

It did relieve pressure, although I am still finding myself shaking and still have to take the maximum alprazolam every day. I am keeping very careful track so I don't take more than I'm supposed to. I was finally able to see my therapist and my psychiatrist and they didn't come right out and say they were worried but they rearranged their schedules so that I see at least one of them every week for a while. I am not allowed to drive right now. Things are noisy in my head and I still feel raw, like the inside of my brain has a bad sunburn. And I really don't know what will happen. Some of these voices have been closed off since I was in my teens.

I have told my parents, of course, that I am under close watch by my psychiatrist and my therapist and that I can't drive and that I am having "hallucination issues." They haven't said anything about it. They both seem far more worried about my mom's kidney infection and because I'm not babbling madly or whatever I guess I can be ignored. Neither asks me how I am doing. So I just sit here by myself waiting for all those voices and personalities to settle in and find their places and trying to stay calm.

It's all just waiting.

Patience is not a virtue

They say patience is a virtue. And I ask why? Why is it a good thing to just sit and wait without complaining?

I have always been plagues by a low self-esteem. Everyone else is more important than I am. It is OK if I have to wait or not get a turn or just plain get nothing because someone else comes first. They ALWAYS come first. I am less than them.

I was raised with this ingrained in my head. Part of it is no doubt middle child syndrome. Part of it is that everyone was always taking care of mother and all else came second - or third - or fourth. This is still the case. I spend more time waiting for my mother than anyone should have the patience for. My dad says I should be patient, that is just the way she is. But I am tired of trying to be patient. I am tired of waiting.

It is simple things like it taking her 20 minutes to do something that should take 10. We are halfway through a movie on Netflix and she needs to go to the bathroom and takes 40 minutes. And I have to sit and watch a blank screen because I am not allowed to watch the movie without her. Tonight it was a phone call. We are watching a show and her phone rings. Instead of taking the call in the other room, she sits in her chair right next to me and talks for 35 minutes. She talks so loud there is no choice but to pause the show and wait.

I just don't have that patience. And I am tired of trying to force myself to be patient. I watch TV to distract myself from my anxieties and delusions. It really is a hardship for me to sit and watch a fucking blank screen for 40 minutes because she has bladder issues or gets distracted getting a drink or somehow takes 25 minutes to microwave leftovers. AND SHE NEVER SEEMS TO CARE! She does these things and makes everyone wait and just expects it to happen, no matter how long it takes.

I am tired of it. Tonight, while she was on the phone chatting along, I handed her the remotes and left the room. I went in my room and watched something on my computer. When she was finally done she came in and pouted and whined because I didn't want to watch TV with her and dad anymore. And my dad treated it like I was throwing a temper tantrum.

A temper tantrum it might be. Because I am tired of it. I can't do it. I shouldn't have to do it. If it was only once and a while I could handle it, but it is literally every single day. Every single fucking day there is something that she does that leaves me waiting. I have tried to explain to her before that I can't wait. I need the distractions. I can't just sit in silence. But she doesn't remember or she doesn't care. And my dad just sits there and waits. He has patience. I don't. And I'm not sure I want it.

Fear

It is bad enough my conscious mind likes to gang up on me. Today is one of those days when my subconscious has to get into the action. I'm hoping that getting the words on the page will lessen the fear.

I have recurring dreams about houses. It used to be houses I used to live in or my grandparents' historic home. There would be odd staircases and such, but it never caused any kind of reaction on waking other than an "Oh, that was kind of weird." Then it switched to new houses. The scenario was my family had just moved into a new house and I was trying to find my way around and see which room was going to be mine.

At first the houses were kind of normal, then they got weird in an Escher kind of way with staircases everywhere. Then recently it changed to huge, grand houses with suites, not rooms. I would wander from suite to suite trying to see if one would suit me. These were Parade of Homes-type suites larger than most houses and there was always some sort of theme, like music or children's books. Again, there was no sense of menace or fear, just an "Oh, that was weird."

This morning that changed. This time I was the first one into the house and the rest of my family wasn't there. Instead I had cats with me, and they were all cats that I have lost: Lyvani, Ashi and Sundae. The house was absolutely huge, with a double staircase and front doors big enough for an elephant. The first thing I did was make sure the cats were settled with food and such, then someone came up and offered to help. I never did see them, I just knew they were there and could hear them speak. They told me that the house was huge and it would be hard for me to find the right room so if I would tell them what kind of room I liked, they would lead me in the right direction.

I told them I liked simple with earth tones and such, and they showed me a couple of rooms. Again, they were beyond grand, but simpler than ones I had seen in past dreams. One had floor-to-ceiling windows that looked over a lake and mountains. It had a special place set up for painting and I was told that here I would never run out of paints or canvas. I told them it was really nice but had to shelves for my books. I was told anything I needed could be changed, and I was "shown" several ways that bookshelves could be added to the room. I kept getting told over and over that anything I needed or wanted could be done.

I started to wake up then, and in that semi-lucid state between waking and dreaming a thought came to my mind: They were trying to find the right room for me in Heaven and the reason they were now helping instead of letting me wander alone was that we were running out of time.

I woke up in a sweat with a horrible feeling of impending doom. Yes, that sounds overly dramatic, but that is exactly what it feels like. I haven't been feeling suicidal at all, but I have been sicker than normal. I have been even more shaky and tired. And I just can't shake that something is really wrong. I guess only time will tell if it is just my mind playing with me again.

Pulling Things Together

Thanks to Shannon, my wonderful therapist, I have been able to pull some semblance of my life together. Yes, things still suck. Yes, I'm still sick and fucking hate the way my life is. But she's helping me see things a little differently.

In our last session I basically told her everything I said in my last post. She listened patiently, then said one simple sentence: "But you're still here."

Despite everything, I do decide every day to get out of bed. I decide to do something, even if it's just feed myself and watch TV. I decide to keep living and not kill myself. She put that into context and I am realizing that just being here is a bigger accomplishment than I thought it was.

She also said that cutting my hair is a good thing - or at least not a bad thing. In her regular job she deals with troubled teens and when they have patients who self-harm the first thing to do is re-direct the impulse to something that isn't damaging. I have cut in the past. I tend to gouge my arms with my fingernails, pull out my hair and yank out my eyelashes. All of these are damaging. Cutting my hair until I'm almost bald is not damaging and in her line of work that would be considered a good substitute to cutting or pulling hair. It hurts no one and if it takes care of the self-harm impulse it is definitely a good thing. So I don't have hair. So what.

She also reassured me about carrying around a stuffed pig in my bag. She said I would easily be a candidate for a therapy dog and Charlotte (the pig) fills that same position. Only I don't have to feed her or clean up after her and the cats could care less if she's on the bed with me.

As for feeling like I'm going nowhere in my life, she said that's OK, too. It is better to sit in one place for a bit if you're lost than go wandering in the wrong direction. Then we got talking about how my dad and I have never been able to go hiking together. He is a destination hiker - he walks the trail, takes a few pics, then hikes back. I am a wanderer - I have to stop at every flower, rock and tree and have a close look. So if I'm not heading anywhere in my life right now, why not sit and look around a bit? Maybe the "scenery" around me will give me a hint as to which direction I should eventually go. And who cares if I don't get there very fast. It's more important to take in the beauty around us than get to the end as fast as possible.

So I keep reminding myself of all this. It's still hard. My dad is right now in my bathroom putting in safety bars because I've become too shaky to take a shower without something to hold on to. I accidentally ate something with a trace amount of wheat and am sick and sore. I feel like shit. But I just have to remind myself that things really are OK.

FML

I always hated when people would post or message the abbreviation FML - Fuck My Life. It is usually in response to losing a boyfriend, gaining 20 pounds or just being late for a movie because of being pulled over and given a ticket for speeding. I always refused to use it myself no matter how bad things got. I absolutely refused to let myself even THINK the phrases Fuck My Life or I HATE THIS. It was part of my ongoing efforts to think positively, as if just thinking happy thoughts would let me fly away from it all, pixie dust or not.

Well, I really have to be honest. I hate my life.

It is January 5 and every single social media outlet, news station and even TV commercials are touting ways to make your life better. There are all kinds of sayings about how the only thing holding you back is your own fear or how starting a new path is as easy as taking the first step. Like every other human who follows our calendar I have been using the change from 2014 to 2015 to try and make my life better. All I need is more positive thinking. All I need is something to get me moving and everything will be better.

Yeah, it doesn't work this way. My life is day after day of constant pain and confusion. I walk a sword edge blindfolded and my feet are shredded from trying to balance. And I hate every single moment of it.

I have to do yoga stretches every day or I can't move at all and my muscles and joints are absolute agony. But if I do too much the pain gets even worse. I have to somehow do exactly the right amount but not too much. I have to watch each and every thing I eat or I get sick - this has been particularly hard because my mom hasn't been feeling well so my dad has been making dinner. That means frozen pizza or lasagna or some other meal I can't eat. So we all feel too crappy to cook and what they are eating smells so good I just want to dive in, but I can't touch it. Instead I have to get myself up and cook something with no gluten and no dairy. And if I eat too much protein my stomach gets horribly upset, but if I don't eat enough I feel shaky and weak. If what I eat is too fatty it makes me sick. And it can't have too much sugar. I have to analyze EVERY SINGLE FUCKING MEAL!

I hate that my meds make me groggy and tired. But if I take less, the hallucinations start creeping in and I have massive panic attacks. If I take too much, I'm completely useless and groggy, but no able to sleep. I had to increase the dosage of my antipsychotic during the holidays because of the added stress of having family visit, which in my mind is just sick and wrong. I have to drug myself almost senseless just to have family in the house. But even with the increased dosage I still had one major breakdown while my brother and his family was here. It was too noisy, things were in the wrong place, my chair was taken, there was just too much of everything. And changing the dosage always leaves me feeling weird and gives me headaches and even on the maintenance dosage I'm groggy.

And there is so much of it that is totally out of my control. I can eat the right things, take the right meds in the right dosage, to the right stretches, and I still lose it. My hormones are still fluctuating despite the depo and that throws everything off. I haven't been able to get new glasses in 5 years so I can't see right so I keep getting tension headaches. The weather will change and I'll end up hurting so much I just want to curl up in a ball and sob. Hallucinations still break through and they just reinforce that I am pathetic and useless.

All those positive New Years resolution saying do me no good except to drive home that my life is totally fucked and I don't know how to change it. Fuck My Life. I fucking hate this. I hate the way I am. I hate that the doctors don't listen and don't understand how bad I hurt and how confused I am. I hate that the government has decided I'm not worth listening to and has left me sitting for more than 2 years for benefits I'm entitled to. I hate that the state thinks I'm not worth any kind of support or coverage so I the only way I can get help is through the volunteer clinic. I hate that I can't tolerate social anything so I have become isolated and alone. I hate that my mom thinks she understands but really doesn't. I hate that every single morning I have to debate with myself over whether it is worth getting up and going on living. I hate that I lie to myself and everyone else that shaving my head is for medical or practical reasons and not the self-mutilation that it really is. I hate that I have to carry a stuffed animal with me everywhere like a scared 2-year-old.

It's a new year. And absolutely nothing has changed except the calendar.