Tuesday, August 25, 2015

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.

Wednesday, August 19, 2015

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.

Tuesday, August 18, 2015

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.

Sunday, August 16, 2015

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.