Werewolf at my Aunt's house. My Aunt and Uncle always have a big Halloween party/occasion. All the cousins come home and participate in handing out candy. They dress up and take turns scaring trick-or-treaters.
I have had time to think and have calmed down since my last post. I think the Latuda is still going to take some getting used to, but more effective was just admitting that my ex-husband was making me angry. I have tried really hard over the years to just be really sensitive to his feelings as I struggled to endure the horror of schizophrenia. But I think that I needed to give my own feelings some room. I'm okay now, more sanguine. Back in 1998, I decided to let my husband go and I have to just accept that he went. Divorce is really hard to get used to. I check my progress every week by googling around, it's also a way of keeping up with my former industry. I just think I need to let go of that too and just really get into where I am. It's like everything is still kind of new to me and I am still making adjustments to my present life. Now that I am around other people, family, on this visit, I notice the way my solitude is shaping my personality. I want to keep an eye on this, and try and be more proactive. I am participating in this visit more than I used to on Haldol, I'm more alert, but I'm still tending to just be kind of silent in the corner. I love to observe, but I should converse a bit more too.
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Farmer's Market. It was a long ten hour drive, but we made here to Mom's, last night. We had to turn around about an hour into the trip because Mom had left her purse behind in my brother's and my house.
I have been feeling off for over a week now, and I'm struggling a bit. I feel edgy, impatient, and generally down. I know from experience that new meds tend to be really great at first, but then the illness fights back. I think that's happening with Latuda. I don't quite know how to deal with it. I don't want more meds, so I might just give it more time before I report it to my doctor, who I see the week of my return home - soon, in other words. It took me a long time to get to grips with Haldol, but it didn't make me edgy ever, it made me calm. At the moment I am easily irritated by other people and this is not normal for me. I'm not angry, I'm just kind of simmering. I pretty much hate it and hope it clears up soon. We visited my Aunt today, and I was hardly able to enjoy it. I just wanted to leave really soon. I don't have a headache, but I feel a bit on fire, it's hard to describe, I just feel grim, somehow. I am also on edge because my ex-husband phoned unexpectedly back in March, I wasn't home. He hasn't called since. I wrote him an email, which I rarely do, with some things I wanted to say - we haven't talked since the divorce, 17 years ago. Everything I wrote was nice, complimentary. I explained about the schizophrenia. I have had no response - no acknowledgement that he even received the message. It's just really hard to relax about it. Maybe I shouldn't have written, I don't know. I would just like to feel that I am understood. I have only started telling people quite recently that I even have schizophrenia. It's a nerve-wracking thing sometimes, you never know how people react. But I'm kind of angry about it, I mean, he's had a perfectly wonderful time since we split up, which I initiated because of my schizophrenia which was just really horrid. It was my first full psychosis and I had a complete nervous breakdown. While he has been clubbing in New York, making a splash in his industry, getting married, having children, I have just been through absolute hell. I am as cheerful as I can be about it, but i guess I hate being left hanging. I actually think it's pretty rude, quite selfish of him not to reply or call again. I keep making excuses for him, like, maybe he doesn't know what to say, or maybe his wife doesn't approve. Then I think, maybe he's trying to "train" me not to call him, even though he can call me. I don't know. I just have been really kicked around by this horrible disease and would like a kind word. I am just tired of having to consider his life as more delicate or sensitive or too too wonderful somehow than mine. I bowed out of our marriage because I have schizophrenia. I don't think a "thank you" is out of order, from either him or his wife. I didn't have to do that - I could have clung on, quoting 'in sickness and in health', til death do we part. I didn't even consider doing that. I thought of his happiness and future. I really gave. It's like, it takes nothing to write "hi, got your email. Will call again soon'. Or something like that. He surely knows I am just kind of like waiting to hear from him sometime since he called. What am I supposed to be waiting for? French Turbans, Farmer's Market. I will be leaving for my Mom's house tomorrow or Monday, so I thought I would post a day early. It's a long trip - about 8 hours by car. I thought I would clarify something I said in my last post, I wrote that I told my Mom that I didn't have anything to live for. I'm not depressed or anything, or suicidal or anything like that. I am just contemplative of the 17 years I have spent with schizophrenia. It has laid waste to my whole life, ruined all my plans - work, children, fully realised marriage. I had to leave everything because of schizophrenia and come back to live with my parents. A year before my first, very heavy psychosis, we had just won our MTV award - Best Music Video of the Year, Japan. We were finally up and running. We were planning children after ten years together, we had just moved to Los Angeles. I left my home, my husband, my job, everything. And I tried after that to go to school four times, to work, it was just impossible. After my last job, being a part-time receptionist in a Real Estate office, I spent 8 years looking for work. My Latuda is now helping, I started that in April of this year, but I am still trying to find my way out of the wreckage of my life. I write in my journal and this blog, I started taking pictures again this Spring and I have a small, quite humble little plan to try and paint again. I am just still really stunned by the passage of 17 years, though. I just had so many false starts during that time, and 11 hospitalisations. I just can't seem to get over the waste of time. I was used to success and I was totally in love with my husband. I know I have written about this before, but I just can't seem to get past it. I am "doing my thing" every day, but I am missing the people and places I had chosen for my life to share things with. I just wonder what possible meaning this ridiculous disease could have for me. I do a bit of outreach online and that has been a good two-way street for me. I have learned a lot and I have been told that I am helpful and friendly, which I value. It's not like I'm just sitting around doing nothing but looking at the devastation. I can't decide if I am just lonely, I mean, I would love to talk to my husband, share meals and a bubble bath and a classic movie like we used to do. Those things gave my life meaning. I mean, I like my projects and so on, I did some nice photography for a while and I painted and I did some very nice art knitting using unusual yarns and stuff, but it's not like I have done something really fantastic like have children and memorable holidays and more time with my lovely husband. I have just kind of doodled for seventeen years while trying to find some stability out of this illness. No amount or quality of art is as meaningful as creating a family. I would have loved to have had a child with my husband. He is really special, has a lovely attitude and was up for adventure all the time. I had hoped my children would have his qualities, especially. It's just I'm 51 and it's late and I don't know what to do. I know nothing now but the futility of making plans generally. Nami shut down in our town. I went to a scheduled meeting last winter there and I was the only person who showed up, not even a moderator was there. I'm just not meeting people and doing things. I know it's a good sign that I want to do these things, that I feel able to do these things. But essentially, for now, I'm just treading water. My focus for the past five years has been little successes, taking care of myself - brushing my teeth every day, taking more showers, doing the laundry more often, keeping the house neat, then, learning to manage on Disability and stuff like that. Things that most people don't have to work at doing. These were real challenges to me for many years. I still could use some improvement, but I am pleased for the first time with my teeth. I especially worked on that for the past four years. This winter I expect a good report at my next dental appointment. It's just I feel like I'm in the middle of a big stew. Everything is in pieces and nothing will ever be the same again. And I am totally alone in my pursuits. My friends in the north of England emphasize small steps, and that's what I am doing. But I just remember the old me taking giant steps - moving to London, buying an apartment there, working for a national newspaper, starting to make films and finding some success. I am finally finding some stability after the chaos, but I'm still wondering where to go from here. In case you are wondering, some possible work is on my mind, but I'm looking at possible jobs I could do a couple of days a week, like working at McDonald's, and I don't think I can handle the pace, the responsibility. There are just no other jobs here that would use my other talents. I know - I have really looked at the whole picture, and for many years, like 13. All the arts programs in our town have folded, the museum was closed and sold. These are some of the places I had applied for jobs over the years, and I was quite ill at that time too. If I had been hired, it wouldn't have lasted long because of my health and the fact that all those places have officially closed down anyway. I haven't had success at the newspaper or the photography businesses in town, I applied over the years at least four times for each of those. It was just speculative at the newspaper and local lifestyle magazines, they can't even have an intern. I offered. And the photography places are hard to break into but I threw my name in the hat more than once to each of them. I got an interview at the local radio station, the job was titled "Production Assistant", but really it was washing cars and setting up the event tent. I didn't get it, the interviewer was like, "why are you applying for this?" I'm just kind of out of ideas, except to put together what I can scrape up of my film work over the years, and make a website. This is a big proposal, it's hard to track things down and I am also missing an important film I did in Los Angeles, my last work and it was a solo project, I was art department, director, camera and editor on that film, and it came out good, though I say it myself. It would be putting my best foot forward to be able to show that film. So I have to get over it and see what I can do. It's a good idea. If I could land a small film job, I could stay on Disability too, they would just deduct my fee from my monthly deposits, which is fine. It's just freelance work and I have done a bit of research and the budgets are miniscule compared to when I was working in film. So here I am.
Farmer's Market. I am getting ready to visit my mom for two weeks. She is having a vacation nearby, and will pick me up this weekend. I opened and assembled and used my new vacuum cleaner, swept and cleaned the bath and put new sheets on the bed. I like being ready in advance. Tomorrow is laundry and packing.
I spoke to a friend in London yesterday and she was talking about American abstract expressionist Agnes Martin, who also had schizophrenia when she was alive. It's really hard to get a sense of her work online, it just doesn't bear up well in photographs. Anyway, I watched the youtube interview with her curators in London at the Tate, and I was inspired. Martin was, like me, brought up in the Calvinist tradition, but was a Buddhist, a discipline I study too, as church and the Bible are too likely to cause episodes. Although my work was as a film director, I started as a painter and majored in it at university. Because of my episodes over the years, I have lost a nice collection of paintings by other people and also all of my own work. I haven't painted in years, although I went through a period of hand painting letters I wrote to my friends when I was ill. I thought about Agnes Martin and her paintings all day yesterday and decided to order some basic oil paint and varnish. I am glad I did it. I have been watercoloring - just color studies - since yesterday, in anticipation of the arrival of my oils. I will paint small and the object is to just have something to put on the wall again. The walls of this house are full of places I have had to spackle because I was throwing things at the wall because of my voices, which were driving me nuts. So some new paintings would be nice. I ordered a different palette than I normally use and am excited about the colors. My local arts and crafts store is currently offering 50 per cent off canvasses, so I will hopefully be able to buy a few to get started with before I leave this weekend. I have to check my bank account though... Overall I am feeling quite hopeful. I am trying to quit smoking as of this afternoon. I just would like to do that. I recently told my mom that I don't actually have much to live for. But since I have become interested in painting again, and I have a camera again I would actually like to make it to at least eighty. I could stand to be in better shape - lose weight, exercise more. I am feeling better since the Latuda and I guess I have found reason to live. I know that schizophrenics have a shorter life span, but maybe I can make it. I thought about trying to put together a website about my film and other works, just to get a feeler, but it kind of spiraled out into too much stress. I thought I could do the odd, very low key video, but when I started really looking into it I felt really anxious and like I might have an episode. I don't know if this will always be the way it is for me though, so I will continue to do my little projects at my own pace and just see if maybe I can do anything. Since it's freelance, if I ever did get a music video job I would just declare my income to Social Security and they would be able to adjust my deposit accordingly. I get nervous just typing about it now. Well, we'll see. Leaves starting to turn. It has started being chilly all day now, not just in the mornings. I am slowly accepting the change. It was a wonderful summer and I just didn't want to let go. I am always thoughtful this time of year because October is the month I met my, now, ex-husband. I remember the thrill of our romance every year. We fell in love quickly and it was sweet and fun. By the following March, we had moved to England and shortly after that were engaged. "Met and married within the year" my husband used to say. It was heaven on earth, and I still miss him, but I am happy that he's happy now. For those of you who don't know, I divorced him because of my schizophrenia. It was fast and horrible and though I didn't know what it was at the time, I knew it was serious and permanent. I didn't want to hold him back. We were getting ready to have children, which suddenly seemed impossible and, actually, with all the drugs I have been on for schizophrenia, it would also have been dangerous. There are schizophrenics, with children, who have blogs on the internet and I always think that is special. Maybe it's not the death sentence I took it to be at the time. I just know my struggle with the disease has been kind of epic, with 11 hospitalisations and endless false starts at going back to school or holding a job.
Actually, if it were to happen, I could probably do quite well at directing music video again if it was slow and not so steady a proposition. I just was so sick when I went to school for nonlinear editing that I can't remember a thing, and budgets now are often too small to hire an editor, as I used to do. But lately I just fancy picking up a camera and doing something like that. I have shot my own video before and loved it. I just have no record of it, all the copies of my film are lost, trashed during episodes. It's unfortunate. I would like to put up a page of my work on the internet, but I am missing that key film and I also would have to do a lot of work to track down my other work. I don't think I would be bombarded with offers, but it would be nice to see if something came of it. All of which is to say that I must be feeling better. That my switch to Latuda has mostly been a success. I am going to visit my mom next weekend for two weeks. I am a little nervous. I don't do so well away from my own home, even if it is family I'll be visiting. I tend to have more episodes and smoke more and long to be back in my own bed. I have quite a lot of preparation for this trip to do, too. Mom will be picking me up here so she'll stay overnight, which means a major cleanup on my part. Also, I don't really have enough clothes to last more than a week, so there's that to consider. And finally, I will be flying back home. I haven't had a flight since 2001, several months before 9/11. So I am a little nervous about all that. I used to take international flights all the time - Europe, Japan - it was fantastic. But now I am quite apprehensive about this little flight. At least I found it for a good price. I am lucky that my town has a little airport that I can fly into for cheap. I am actually looking forward to this trip too, but it's mixed with apprehension. I always take each trip to my mom's as if it might be my last. I certainly don't see myself taking any more flights any time soon. It's all new. We'll see how it goes. Happy Fall everyone! California Roll, Maguro. I'm still going strong after my recent bout with pneumonia. I have had it before and I am always on guard after I finish the antibiotics that I don't have a relapse. It's just such a debilitating thing to have go wrong.
Tonight I broke out my birthday money, from my Dad and his wife, for a plate of sushi. It was delicious and a welcome change from eating in all the time. I saw my therapist yesterday and she started in on me moving again, and I just said if I won the lottery I would eventually move my brother and myself to Los Angeles. But I thought about it on the way home and I thought, I really don't need to move to Los Angeles. I loved my time there, but I have really quite settled in here, after many years of turmoil, and I think of it as home. I have everything I need and I am safe. I realised I have kind of anchored myself here, it's my family's home since I was in middle school and we always come back here, I have discovered. When I was young I really wanted to leave and discover the world, which I did. I did not expect to come back here again, ever, and even winced at visits. But this place has really saved me. I am known at all my local shops, I don't get lost or stuck in endless traffic. I would like more local friends, but I wave to my neighbors and speak occasionally. It's just kind of as good as it gets. I'm not nest feathering anymore, so all the great thrift stores in Los Angeles would just go on without me even if I lived there. There is something fantastic about all the talent there, and I loved that. But I am getting older now and I am just kind of happy with a cup of chai and my computer, here at home. One thing I have seen is that there are fantastic people everywhere, including here. I appreciate that a lot. I was talking to my Mom about this last night, and just wondering why is it that my therapist wants to "chivvy me along" - get me to move somewhere and get a job as if I were 28 years old and did not have schizophrenia. I don't think she has much experience with the truly mentally ill. Just the slightly disenchanted I think. I mean, I lost everything, I failed endlessly at countless comeback plans because of schizophrenia. If it were just as simple as getting a job and moving on, I assure you I have already thought of that. No, for me living here is the answer to a long and complicated equation. I really have tried other things and have come up with Disability and living here with my schizophrenic brother as the logical answer. It's good actually. I am with family, my immediate needs are met and my medical needs are met - all of which I could not take care of myself with any job I might have been able to land here. It's less money than I ever thought I could live on, but my Dad put me on a budget and it works. Plus, with medication I no longer shop for clothes or get my hair done. Nothing really excites me like that anymore. Which is fine, I did that all when I was younger and I enjoyed it then. I don't know what may happen next, of course, and maybe this is what my therapist is aiming at. Staying responsive and flexible. But as my Mom and I discussed last night, for a schizophrenic I am very very lucky to have a place to live and people who care. Many many don't have this. This is kind of what my therapist misses, I think. I have been all over the world after all, and if it were making something happen, if that were possible, I would be doing it. I am just trying to envision my future here, in this house, with my brother. I am putting all my energy into that. Learning about the maintenance of the house is paramount. It's a big responsibility and it's not just me I'm looking after. This is it. Grates, Downtown. I am feeling much better. I took my last dose of augmentin yesterday morning. But my run of weeks without episodes is over. I had two last week. They were kind of the same as the ones I had on Haldol, but tighter and a little meaner. I kind of expected them to return. It's a disappointment, though. I kind of wanted to try and see The Intern, just to see how I do on the Latuda, but with the episodes returning I just don't think it's a good idea. Seeing films causes episodes, every time. I don't know why. Sometimes watching television does, but I don't watch much television. Just a couple of episodes of the Golden Girls before falling asleep. Life is going quite well for me generally, now that I am feeling better. I keep thinking of my Grandmothers, who just kept going after my Grandfathers died, without any disasters. I just keep praying that things will go that smoothly for me and my brother. I know I'm a bit early for this kind of outlook, but schizophrenia put me out of commission at age 34. It's been a lot of years of trial and error, hospitalizations and so on. I don't know how I do it. I think I'm mentally aged about ten years older than my actually age, physically too, even. Tomorrow I start back on the treadmill at the recreation center. I can catch up on my awful soap opera while I walk. The weather is cooler and my nose and lungs are still a little sensitive to the damp in the air. I just count my blessings, for the most part I am physically well, no aches and pains, and mentally I am still better off on the Latuda than the Haldol, because I am more motivated and upbeat. I thank God for my Doctors and their great care thanks to Medicaid. Life is good.
Market House, Downtown. I am slowly feeling better. I went to the Doctor's yesterday and he gave me a breathing treatment, which was fantastic, more medicine and an inhaler. I got out a bit today, it was warm, thankfully. I showered. I still don't feel like I can sleep in the bed as opposed to the chair I have been sleeping in all week, but I am improving. I don't wheeze today. It has been a sobering illness. I feel my age and I felt that I was glad to be on my own, not with a partner. It was messy, uncomfortable and a little scary. Not much even a caring partner could do to help, although I did call my mom to help me decide whether or not to go to the emergency room. I decided not to go. But I did call my Doctor on Monday and he said come in, so I did and here we are. I decided that I would be on my own, even if I had a partner, with this illness. Like schizophrenia, it's just a lonely journey being ill, loved ones just stand by, which is nice if you have that, but I am a bit proud and independent and would not like to be seen to be unable to cope. I can't help it, I'm just like that.
I have been so happy for my comfy chair and my comforter all week. I dug in. Really, I have had pneumonia and a collapsed lung before, but I was younger and this was much harder, way more uncomfortable. It was grim, actually. I felt that if I did not keep my wits about me I could actually die. I mean, pneumonia is nothing to fool about with. I am just in a kind of pause after the worst of it, as I check myself occasionally and notice that I am in fact alone. I still have my mother and father at the end of a phone line. But there was nothing either could do but just wait with me while the antibiotic took effect. In my experience, it was slow. Or maybe I'm just older and sicker. I noticed that I don't have all the accoutrements my mom had for illness as I was growing up - thermometer, heating pad, stuff like that. These things really make a difference. I am going to have to put a little money aside for my illness kit. I still think of myself as a bouncing happy 30 year old, but in fact I am quite aged now. The Latuda has stiffened my muscles quite a lot for example. Hell, I'm just now 51 and I am starting to have senior types of problems, I guess. I don't have a lot of plans, I see the future as low key, with some illnesses, then it's over. It's weird being this kind of sober. I look at people celebrating graduations and being grandparents and so on on Facebook, and it's like, yeah, well, I'm alone and that's it. It's not so bad if I just own it. Comparisons are just not really fair anyway. But yeah, schizophrenia is not what I planned for myself as a future and though wisdom would be nice, being philosophical is all I have. Coffeeshop, Downtown. Ok, I am sick as a dog. Really. Been confined to bed for 5 days and no sign of relief. Actually, I am going to try and see the doctor tomorrow as I don't think the antibiotic is up to the job. I am surprised I made it through the weekend without a trip to the emergency room. Breathing very shallow. Hate this. May have successfully ditched suitor as I didn't answer his last email. Just didn't feel like it. Nothing in mail today, so maybe finally an understanding. This is a relief, too. I was getting tired of his little prompts and stuff. A relationship is just not a gift to me. It's more work than I can stand. I like bed, desk, microwave. It's all very simple for me and the routine of it is good for me. It's not where I started in life, but it's where I have landed after many years of struggling for a normal life again. It's not depressing. I have a lot more freedom. Of course, it would be lovely to be with my ex-husband again - he's the only exception. I don't know how I got so lucky with him. It was heavenly.
For some reason, I am finding it hard to stand up to the doctor. It's not his fault. I just get all twisted around in my mind about what I want to say and I ultimately figure, he knows what he's doing. But I have actually had pneumonia before, and the drugs I was given were better, worked faster. This illness feels actually worse than that. I am going to have to summon the courage and go in, I think. I'm just not comfortable breathing right now. It has been a lot of years since I have been this kind of ill. I don't get out of the house much, so exposure is less of a factor. But somehow I caught this absolute mess. I hope I can get some relief tomorrow. I also have to buy more food. And my car is broken down again. So Dad is going to lend me one of his cars, which is great. I'm just such a mess. Been in the bed for so long. I try to tell myself it's for my own good to talk to the doctor. I am just scared he's going to say give this drug a chance. I think five days is good. I should feel a lot better by now. It's all just so irritating. But I really have done my best with this. Must be seen tomorrow. |
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June 2017
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