Monday, January 11, 2016

Where is my support? - Part 1

I have come to the realization that my family really doesn't support me, at least not the way I really need them to. Sure, my parents were perfectly willing to take me into their home and provide food and all that. My dad helps me when I am too stressed to drive and he does the grocery shopping and stuff. Physically, they have provided me with everything I need.

Mentally and emotionally, not so much.

Without even getting into the mental illness I can name several ways they are not supportive or where they downright undermine my emotional needs. I am in constant pain. I have arthritis and fibromyalgia, so my joints and muscles both ache, have stabbing pain, cramp up at random, etc. Then there are the autoimmune disorders that mess with the circulation in my hands and feet, cause me to break out in hives at random intervals, and generally make me miserable. But I can't talk about it - at all. My dad doesn't understand and will just give a generic "sorry you ache today". And my mom: she is an emotional black hole. She has chronic conditions as well and hers is ALWAYS worse. If I mention my ankles hurt and I'm having trouble walking straight, it is an opening for her to start on a rant of everything that is going wrong with her. There is just no way I've found to rein her in without making her all defensive and yes, she will actually pout. She cannot stand to have anyone besides herself be the center of attention. When I got my SSDI approval after almost 3 years of battling for it she gave me maybe 5 minutes before she broke in with "my knees are a mess; they're bone on bone" - the result of x-rays taken a week before. It was not new information, but she just had to change the subject to her. When I told them my doctor thought I might have lupus (so far no confirmation; fingers crossed) her immediate response was that she had kidney failure. This wasn't true. Her doctor said she had some kidney damage but that it was nothing she needed to worry about yet. I also found out later that she went to 3 different doctors because she was convinced that if I had lupus then she must, too.

I also get pretty much no support on the food front. I have a very restricted diet: I cannot tolerate gluten (I have Celiac's disease), any dairy products, any nuts, and the heavier proteins such as beef and pork. My parents will pick up my "special" food if I put it on the shopping list, but they won't fix any of it for me - not that I've asked them too, but it would be nice to have some help when I'm really feeling like crap. Since they won't cook stuff I can eat, I tried cooking for them. But if I make a dish that I can eat, they won't eat it. I have made chicken stir-fry and other dishes that are naturally safe for me to eat, or that need only minor changes. They still won't eat it. On their end, of course, they very rarely fix anything I can eat, and sometimes it borders on abuse. It is bad enough when they come home with 3 types of artisan breads and a package of cookies and leave them on the counter. But when they bake a pizza or my mom fixes traditional lasagna? That is actually painful. Then there are the "we just don't give a damn" meals. Christmas breakfast this year was pancakes, and my mom didn't bother to use the gluten-free flour mix because then the pancakes aren't as fluffy. And you just can't have less-fluffy pancakes, even if it means I am left out. And there were just the 3 of us, so it's not like 12 people got fluffy pancakes and I was left out. It was two with pancakes and one eating cereal. Oh, and Christmas dinner? Ham and scalloped potatoes. They know I can't eat ham. They know I can't eat potatoes fixed that way because of all the dairy. The only part of Christmas dinner that I could eat was the steamed broccoli. Happy fucking holidays.

My parents have me so trained not to talk about how I feel physically that I have a hard time talking about my problems when I go to my doctor. Not good.

Tuesday, January 5, 2016

Another fuck up

So I fucked up again and I am trying really hard not to have a massive down-spiral.

Yesterday morning I was doing very poorly. I was having trouble placing my very vivid dreams in the "not real" category and I was touchy and mentally sensitive. I went out to make breakfast and my mom was blocking the kitchen area - it's tiny - and I couldn't deal with the proximity thing. I said I would make breakfast when she had finished making hers and I went back in my room. Then my dad came in and yelled at me, saying my mom had a right to be in the kitchen, too, and why couldn't we both be in there at the same time. I muttered something about being touchy and cranky and he went away.

It was at that point that I realized that my parents aren't understanding or getting the signals I am putting off when I am in distress. Apparently if I am not in total crisis mode, they think I'm doing just fine.

So I tried to open a line of communication. I was having big problems with the verbal communications thing, so I wrote a letter. I explained that I am dealing with a severe mental illness and even if I look fine, I'm not. I tried to described what it's like to try to navigate my world and what my mind actually saw that morning when I went out for breakfast and why it caused such a negative reaction.

Major backfire.

I actually am kind of impressed my my mom's talent for twisting things around, especially since she probably has no idea she is doing it. She sat down with the letter, in tears, and instead of us talking about my issues and what kind of support and understanding I need, I ended up spending 10 minutes reassuring her that I still love her and I'm not going to stop living with them. Then she went on to say that reading my letter made her realize that she also has schizophrenia (her doctors and psychiatrist have already ruled that out. I was there. She has dementia caused my too many medication interactions and overdoses) and so she knows exactly how I feel. (Bullshit!). She then went into the whole history of how she has had the depression for so long and how friends helped her get help and how it runs in the family and cousin Robert had anxiety ... I finally had to cut her off. At that point I was so overwhelmed and pissed at her pre-empting the conversation I just left.

Oh, and I saw my dad with the letter in his hands but he hasn't said a word. I have no idea if he even read it.

So - the result is no change in status except that my mom now has a new "issue" that she can tell everyone about. I have dealt with my mental health issues by myself for most of my life and it looks like I will have to continue to do so. My mom it too focused on herself to see when I need help or support. My dad just wants to ignore what he can. Even my sisters are starting to be no help. When I tried to talk to Kristin she gave me the automatic, non-supportive "that's just how mom is." Nothing else. Everyone else just gives me a "I'm sorry you have to deal with that." It is all still focused on mom and not on me.

I have nowhere to go. I have no one to talk to day by day who will actually listen. I had thought I was making progress with my family, but this has shown me that I have actually failed miserably at communicating my needs to them. I am royally fucked.