I know this isn't going to go over well with my grandmother. She doesn't really understand, and I don't think really would want to understand, about mental illness, so it is not something we discuss. She knows about it, but what she knows exactly I'm not sure of. She was told by my mother that I would accompany on this trip, so I left it to my mother to tell her I'm not, since I had not ever agreed to do this in the first place, and I really cannot do it right now. I wish that I could. I adore my grandmother, and being that she is quite elderly, of course I do not want to hurt her feelings or leave her to feel scared on an airplane. But now my uncle is going to be taking the whole trip with her, and she will not be alone. I am not sure if my uncle stepped in because he found out I wasn't going to do it, or not. It's possible he really wants to go to Disneyworld. Something my mom planned for us all to do without consulting me or my brother or sister first. My mom loves Disneyworld. Because it involves extensive walking in hot weather, which is really physically difficult for me, I do not love Disneyworld. And I have been there many times on family trips. I really could do without going there this month.
Sometimes, I'm sure in all of our lives, the issue comes up about how to explain our illness to others. How to, and when to say, "No, I really cannot do that right now". And when to say, "This is what I am dealing with right now, if you would like to know..." I have to say that I don't do that often with my family, because the majority of my family is wrapped up in their own problems, and they do not really express much interest in mine. I have to say I understand this, and this is not something that leads me to feel sorry for myself. I am used to things being the way they are. But sometimes, I do have to set a boundary, and explain my limitations, and usually, people don't understand. My mom was actually at my home tonight, and she was making fun of me for being tired, saying, "what is WRONG with you?? Are you ON some drug?? You look like your eyes are glazed over!!" Note: I have never been on illegal drugs or addicted to prescription drugs in my entire life. Then she snapped her fingers in front of my face like "wake up! wake up!" I really wanted her to leave.
I have an autoimmune disease called Sjogren's Syndrome (in case you didn't already know that), Fibromyalgia, associated arthritis and peripheral neuropathy, and I, of course, have Schizoaffective Disorder for which I take a boatload of medications every day. All of this does lead to me being tired, frequently, and more tired than the average person. I require a lot of rest. My mother doesn't. So she doesn't understand this about me. It would seem that after, oh about, 16 years of me having health problems, perhaps, by now, she would understand that I get tired. And I think sometimes she does understand. But only a little bit. We have been on trips to Disneyworld before where she looked at me and knew that I needed to sit down and not keep walking, because I really was going to pass out. And I think then, she understands. But when she's planning a trip where I am expected to, again, walk around Disneyworld, I don't think she considers the facts of my health. I'm not saying I can't go at all, but I really would rather not do that to my body or myself if I have a choice. Of course, in this case, the choice is to upset my mother, my grandmother, and look like I'm antisocial to my entire family. That is the way it would be viewed if I didn't go at all.
But I'm considering not going. If I do go, I am setting limits on what I will, and what I will not do. I will not push myself until I am ready to faint. I will not push myself so that I'll need three days in bed to recuperate afterwards. I'm not doing that again, not for anybody, not now, and not ever. I have learned from experience what I can and cannot do, and I will not attempt to do things my body simply isn't able to do.
I think it's healthy to set boundaries when necessary. We all need to do this, and perhaps you have been in similar experiences. I would be interested to hear how you've all dealt with such situations. I know it's harder for me to explain my mental health symptoms than my physical ones, but because I was so very psychotic for so long, my mental health symptoms are generally believed when I do explain them. So it's not like I am accused of pretending to hear voices. I've been accused of being possessed by demons, again, by my mother, but that's another issue. I've learned that I have to say, sometimes, I am really having too many symptoms right now to do this. And so, that is what I did about the trip with my grandmother. I will not be taking that trip. I'm sorry if nobody understands why. But nobody else in my family has psychosis to the point that they hear voices and have delusional thoughts. So I don't totally expect them to understand. I do expect them to respect the fact that I have limitations. And if they can't expect that, well, that is their problem, not mine.
I am not going to push myself to the point that I have to go into a hospital again. I haven't been in a hospital for mental health reasons in three years, and that is a good thing for me. I have been stressed lately to the point that I was really afraid I'd get suicidal or totally psychotic, and have to be hospitalized. But that didn't happen. My stress of moving has lessened now that the moving part is done. I still have to unpack and decorate my entire new apartment, hang curtains and blinds, and things like that. But I am less stressed about it, overall. I saw my therapist yesterday, and she said I looked much more relaxed and my face was more animated than I had looked the week before.
I still have a lot of things I am worried about, but I am trying to take them on one at a time, and not worry about them all at once, which leads to me getting very overwhelmed and freezing in a panic where I feel incapacitated. I am trying not to get to that point. I decided I'll unpack at my own pace. Whenever it gets done, is when it will get done. If it takes me a month, so be it. I am in no rush. I sometimes want to do a million things. Like the other day, I went to four stores in one day, and then a mall, which is too much shopping for me. Way too much to do in one day. I was looking for curtains and blinds, and curtain rods, and things on sale. I bargain shop to get the best possible prices on things. But I have to watch it when I do things like that, because the next day, I could barely do anything, as I felt like I'd been run over by a truck.
For right now, I feel that I have to really make taking care of myself a priority. The voices are a sign that I'm under too much stress. They don't tend to start happening again for no reason. I know that. I have been under too much stress, and I have to limit the stress. I have no other option unless I want to end up in complete psychosis again.
The voices scare me, but they are a warning. They serve to alert me that, "Hey, something's not going well here!" and I have to listen to that and adjust my life, and sometimes my medications, accordingly. I have to respect the signs my body and mind are sending me that I'm too stressed out, and make the necessary changes. Hopefully, with these changes, and careful watching of the stressors, I can avoid prolonged trouble with the voices. I might not be successful at this, but I have to try.
When I was a little girl, I had this beautiful yellow wood desk, with flowers on it, that I loved. It was painted by a woman we knew. It said on it, in red letters, "Take time to smell the flowers". I've always thought this was a good motto for living. Sometimes I just forget.