Wednesday, March 30, 2011

Monitoring bubbling symptoms and wishing the world really understood what it's like when you have to do that with your brain

Hello, friends. I think of you readers as important people, and I just wanted to mention that. Your support in my difficult times is very helpful. You are much more than pixels on a screen to me. You listen. I am sorry I have not had time to keep up with other people's blogs much the past couple weeks.

The struggle continues. Many adjustments are going on in my life. The move, finally, happened. It is sort of done. I have moved into a new apartment, but have much to do to set the place up, unpack, decorate, etc. But the worst of it is over, for now. The place I'm living isn't the best, but it has some new things like kitchen cabinets, a fridge and a stove that were recently put in, which is nice. Sometimes you have to find pleasure in the small things. Not having mold in my bathroom is also a plus.

Because of my Fibromyalgia and arthritis, moving by going up and down stairs was really hard on my back and knees. It doesn't help that I'm overweight and get out of breath easily now. I am really worn out. My mom and my brother helped a lot, as did the maintenance guys who moved much of my stuff for me, after some negotiations with the agency that owns the apartment.

The anxiety about the circumstances leading up to me moving was so bad, it led me to vomiting and, many bouts of hysterical crying, which I can't really explain to you except to say if you knew all that happened, you would understand the tears. I am not comfortable going into any details about where I live exactly right now on this blog.

I have to decide whether or not to take classes over the summer. I do not know yet if I'll get into the other university I've looked into attending, and I do not know that I can go there due to transportation issues if I do get admitted there. I do not know what to do about this whole issue. I really don't like the academic program I'm in, but I'm really unsure it would be a good idea to ditch it. It's very hard to know what to do without knowing if my car will continue running in another month. Last week repairs on the car cost me a thousand  dollars, which is a lot of money when you only work part time. If the car thing wasn't an issue, I'd just try to go to the other college, but it is an issue, because I can't buy a new car, and this car has had many things go wrong with in the past four years. I have put into the car, in four years, the same amount I paid for the car when I bought it.

On top of these issues, my mother is pressuring me to take a trip to accompany my grandmother on a plane back to the state she lives in, at the end of April, right when my final exam is coming up, and on the same week of a presentation I have to do for my class; it is really bad timing. Everyone's going to think I'm a jerk if I say I can't do it, but everyone doesn't hear voices, and I do. I know how much stress I can take at once. Moving, school decisions to make and school work, my job and recent ongoing changes there with a new  boss, my car problems, my health problems, all my family members' many, many problems, obligations to the organizations I volunteer for, money issues, and having symptoms of psychosis combine to make this a very bad time for me to have to take a trip and be responsible for taking care of my grandmother, plus taking time while I'm up there to visit my other  aging grandparents in their nursing home, which is something I would have to arrange transportation to do, and that's complicated because I'm not close with my relatives, though I would love to see my grandparents........I want to do it; I really do. But I just don't feel up to taking this on right now. I even told my mom repeatedly, "Look, I'm hearing voices right now, I'm having a lot of symptoms, and I have obligations with school not to mention work, so this is not a good time for me to take a trip." But she refuses to listen. She puts a guilt trip on me about how my grandmother needs me to do this, and doesn't understand that it just might not be possible for me to do it. Then I think, what a horrible thing it would be if my grandmother passes away and for the rest of my life I have to feel badly that I didn't accompany her on this plane trip and I'll have to hear my mother tell me exactly how horrible I am for it....ugh.

I have to say I'm really tired at the moment and I just feel that I am constantly trying to maintain homeostasis and not let the delusional thoughts bubble up to a boil where I am bothered by them all the time. I am managing, but I am always on guard, waiting for the next shoe to drop. I think that after I got my biweekly Risperdal Consta injection last Friday, the psychotic stuff lessened. I'm not hearing as much right now, which is good.

Another issue that is going on is that my case manager who has been a big part of my life for the past six years has to close my case. I haven't been in a hospital in three years, and so I'm not eligible for case management at the community mental health center, and she has kept my case open longer than she was supposed to already, which was very  kind of her. I have talked to this woman every week almost for the past six years. She knows a lot about me. She has seen my apartment when it was trashed, and helped me clean in up. She has gone to bat for me, and has checked up on me, and has gotten  me in to see the doctor when I need a sooner appointment may times, and has taken care of issues I've had with getting my medications, among other things. Mostly, she has been a big comfort. And I feel like I have needed that comfort.
Maybe I don't meet the criteria, but who is making this criteria? It is all based on money. The state government is always cutting funding for mental health so htere is not enough money to help all the people who need help.

I really believe that having a strong support system is a vital part of treatment for people who live with mental illnesses. I don't think the whole solution comes out of a pill bottle.  I really believe that my case manager, and my therapist, who I can only continue to see for a few more months, have kept me going. I spent years in abject isolation with no real human connections, and that kept me out of my mind. It was when I met my case manager that I finally had somebody who actually cared where I was living, and would keep tabs on me, and not  write me off if I stressed her out too much. I really like her charismatic and quirky personality, and I am going to really miss her and be lost without her.

In June my ten-dollar-a-session therapy arrangement that my case manager got for me ends, and that means my therapist of the past four years will no longer be in my life either. Losing these supports is a  dangerous thing for me, I'm afraid. Again, I think about the government and funding cuts, and I just wonder if some legislators knew what it was like to live with Schizoaffective Disorder or Schizophrenia and not have adequate support and not have adequate and  affordable treatment or not be able to keep a roof over your head...if they knew what that was like, would they make different decisions.  And I'm afraid the answer to that is no, they wouldn't. I have written letters telling them exactly what it is like, but my response to those letters has never been anything more than a bland form letter.

I have to say that if more people understood what life is like with a serious mental illness, life would be much better for all of us who live with those illnesses. Society's ignorance really creates deficits in our lives that don't need to be there.


  1. Hey Jen,
    I feel for you, it is a very difficult situation. But it sounds like you know that taking that trip right now may well push you over the edge, and what with everything else that is going on in your life you really don't need that.

    After a certain number of trips around this mental illness merry-go-round we gradually learn what we are capable of, what sets us off, what we can handle. If you feel like taking this trip in the midst of all this other turmoil is likely to be more than you can take, I hope you can find the strength to say no. You're no good to the world if you are no good to yourself, and given you are already having symptoms and a number of big changes, discretion might be the better part of valor here.

  2. Hi Jen, Well done on getting through the move although it sounds so traumatic!. I'm so sorry all this is happening to you right now. I had to stop therapy two weeks ago because my poor godfather just couldn't afford it anymore and I am really feeling the loss so I can identify with what you are going through on that end.

    I agree with The Depressed Reader in that this trip definately does not sound like a good idea right now with everything you are going through. You have to take care of YOU before you can take care of anyone else. And you don't want your Gran to land up taking care of you during the trip because of a meltdown.

    Good luck with all the decisions you have to make. The decision- making process is not my favorite thing but it needs to be done. You will get it done...just take one baby step at a time :)

  3. Such a lot going on for you right now Jen, it's good that you know where your limits are and how to respect them and enforce them. Family members are supposed to love and understand us, so there shouldn't be an issue with you declining the offer to accompany your grandmother - but as we all know, it's rarely that simple. I wish you well in your decision.

    As for losing your case manager, that really sucks big time. Don't they realise that having her around has contributed to keeping you well? Grrr. It makes me angry when the medical support system is so short-sighted. Will you be able to get another case manager or therapist once your therapy ends? As you say, and I truly believe also, having that support network is SO important in our wellness. Oh Jen, I hope things start to get easier for you soon. You deserve a break xx

  4. Naturally, I have to echo everyone else. Jen, you are a strong and smart woman. You've already survived more than some people will deal with in a lifetime. And you care about others, which you continue to prove day-in and day-out. I'm sure your mother's a good person too, but she also has her flaws and imperfect moments, and this sounds like one of them. Yeah, I get it, she's probably going to take you on a guilt trip no travel insurance would cover, but that doesn't make stretching yourself any thinner the right thing to do.

    I also thought of something while reading this post. Sometimes when we try to explain to others without our own set of challenges why we have to stick to an unpopular decision, we do exactly what you did - list everything on our plates which complicates the problem. I wonder if sometimes that's not healthy for us. Your list is quite extensive. Isn't it hard enough to deal with those things one at a time that you don't need to sit and think about them all at once? I know even with my own circumstances that doing that often sends me into a panic; I can't think it's a good habit for you to have.

    Lastly, I want to share my theory about having no regrets, on my own terms. It means that I do my due diligence - research, careful thought, consideration of all options - and when I'm done and reach a conclusion, I move forward. I had to do this so I'd eventually stop second-guessing myself and perpetuating the stress. It's hard to stick to your guns, no doubt. And I would imagine you might have the additional factor that if you let yourself become too resistent to when others are persistent you risk blocking out help when necessary. But I think you have plenty of other people validating your thought process and can stand by your decision.

    I wish I had something more helpful to say about the lack of government support, but right now I don't. I do, however, feel pretty confident you'll land on your feet...but in the meantime it's just one MORE reason to stand firm about this trip. I hope the situation starts to get a little easier for you very soon.

  5. My heart goes out to you in this difficult time. You've got some wonderful advise from your blog pals here and I honestly couldn't top it.

    Wishing you best wishes and good luck.

    I'm following you back, thanks for stopping by Monday Madness at wordsinsync.

    Shah. X


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