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Yaya kindly suggested, when I asked her: "maybe you can write about how you take care of yourself. What is it that you use to self-soothe. What is helpful for an advocate to do and what is not helpful." Okay, Yaya, thanks! I think I will take those questions as my subject tonight.
First though, a bit of an update from yesterday: Joe now tells me he cannot cough at all, which really scares me, and he showed me what happens when he tries to -- no cough comes out but a little sputter. This does not bode well, according to everything I've read since last evening. It seems that there is a machine, called a coflator, that will take care of the secretions in his throat, to make him more comfortable, but the fact that he can no longer cough does suggest that his respiratory muscles are involved.
He doesn't seem to understand this, though, and maybe that's for the best at the moment. When I asked him about the "weakness, er, fatigue" and how he was feeling, he said, that he thought it was due to the pills he had to take, which for the most part are the same ones as he has always taken, plus an antibiotic and one for ALS...No, I believe his "fatigue" is due to overall weakness, perhaps because of more breathing difficulties than he knows about, or perhaps because he lacks more muscle strength than he is aware of. One or the other. But I didn't say that, because I figure if he is in denial, it must be for a reason and I shouldn't deny him the right not to know what he doesn't want to. I mostly just said, "Well, Joe, you're right, it could be the pills, or maybe you're doing too much. You could be tired for any number of reasons." And left it at that. After all, the Lahey Clinic will let him know where things stand soon enough...
As for me, well, I sent my post and Paula's comment, which was so incredibly insightful, to Dr O, asking her about it, and she said it was right on, and exactly what she had been trying to tell me, how when chaos and fear have taken over my life, I run to the things I can control -- she named three things, among them eating and eye contact. She also was interested in Paula's statement that I needed "professional help" in that she is not an eating disorders expert and wanted me to have a consult at a local center that specializes in such problems...But to that I said an emphatic NO. Because that would focus too much on it, which would only make it worse. I need the whole thing to stay in the background or it will take over my life, and I do not want that.
Now then, to Yaya's Q's:
1) How do I take care of myself? Hmmm. I have a lot of help, for one. And for another, I guess, I shirk a lot of daily tasks that others take for granted. If I confess them honestly, you must not judge me, okay? First of all, there is personal hygiene, often a problem for those of us with SZ. I have solved that dilemma in the only way I know how: I don't bathe or shower until I smell, which means once every three weeks or so. I don't brush my teeth, I mostly use a gum stimulator that I can keep by my recliner and use when I think about it, rather than brushing at a set time of day. That frankly is too hard to remember or do. I tried to remind myself to do it, by setting up an alarm on my computer with a reminder attached, but I never once paid any attention to it, just got annoyed with it and switched it off, without actually going to brush my teeth when it said to. So much for reminders! I do wash my hair, in the sink, once every three days, because I don't want people to know that I don't bathe; it's a trick, but it works; no one has guessed my secret -- I've told them outright or not at all. I also sleep in my clothes, so I don't have to change the next day, or the day after that. Unless I am going out and my clothes are too wrinkled for public consumption: I have a horror of being conspicuous, as you know, and so I do try to look unnoticeable. I can wear the same clothes for a week without changing anything, though I do try to wear clean clothes to my appointments with Dr O, or at least not too dirty ones.
House-keeping I get help with once every 2 weeks, so I don't have to do too much but keep up with the mess in between visits. I do wash my dishes eventually, and I'll occasionally pick up the books and papers strewn around, but on the day that the woman who helps me clean comes, we both pitch in to do battle...usually. So I guess you could say I do some of my housecleaning, unless I'm feeling too too weak or tired. She always tells me not to do anything, but I don't like someone doing it all for me, so I want to do part of it myself, hard as it is to get motivated.
As you know, I will cook, upon occasion, for Joe, though rarely for myself. And as to eating, you're aware of that struggle. I rarely drive, and when I do it is to go only 3 miles or less. I can't drive long distances without falling asleep at the wheel, one, and two, I'm scared to go anywhere on the highway, though I want to learn. If I could only get up the nerve to ask Joe to come with me and navigate! Meanwhile, Joe drives me places I can't get to on my own while he can, and in the future -- whenever that may be -- I have a driver arranged for the hour-long trip to see Dr O. For other medical appointments, though, ones that are in the local area, Medicaid provides livery taxis at no cost, so long as you call 2 days in advance. We also have a Shopping Bus that goes to two different stores on two different days from our building (for low income elderly and disabled people). If worse came to worse, I could always hop on board that, though one store is close enough to easily walk to, even pushing a shopping cart. Transportation, though, is the biggest problem to overcome here. If I didn't drive at all, or had no car, I'd have to rely on the bus, which I am scared to take! The local bus doesn't even take the main street through town, where the businesses are...So you have to walk a couple of miles no matter where you get off, to get to any of them. So I need to learn to drive a little less fearfully, and for somewhat longer distances. It's a matter of being independent, which will be crucial one day. And Joe may need ME to drive him someday. I want to be able to rise to that challenge.
How else do I care or not care for myself? Well, I do not have to worry about my medications. The visiting nurses do that, which is a huge burden off my shoulders. They fill all the prescriptions and take care of refills and calling the doctor when I need more and they fill up my daily pill boxes and oversee my taking them morning and evening. All the meds are kept locked in a Sentry box, so though they are left in my apartment, I couldn't take anything extra or overdose, even if I were so inclined, which I never am. The same agency that sends the nurses also provides, upon orders from the doctor, a nutritionist and occupational therapist, both of whom I've seen at various times. The nutritionist is to come again in fact, though what she can tell me that I don't already know, I'm not sure.
One thing I want to do, when I have more energy, is get some exercise, which would make me feel a lot better than living this sedentary life I do now. My bones need some walking and so do my spirits. But at the moment, I am too weak and tired to do much of anything.
Self-care is an on-going struggle for most of us with this illness, and we manage it with more or less difficulty depending on our general level of functioning and our state of mind overall. I personally find the whole business very trying, though I manage to fake it well enough that people are not always aware of my troubles with it. Since "passing" seems to be adequate, I guess I'm doing enough to get by!
2) How do I self-soothe? Mostly by writing, writing, writing. I'll write in my notebook the things I canot say elsewhere, or in my blog when I want to talk to people and there is no one to call...I'll write poetry or essays when I'm feeling creative (though that is not soothing, too much pressure involved) and I'll write e-mails when a good friend writes me a long delicious letter and I actually have time to write back at length (rare these days). I dunno how else to "self-soothe." I love folk music, and country/western and international folk music, but for a long time I have not listened to music at all, finding myself too impatient to relax. I used to watch Home and Garden TV, finding the design shows and the Do-it-yourself programs a relaxing break in my day. But no more. Sometimes, I will simply lie down and take a nap, which is at least relief from "it all." I can usually sleep for a couple of hours. But I guess, short of writing, I don't know what self-soothing is all about, nor how to do it if I did. Maybe that's why I get so many headaches that linger for days?
3) What should advocates do or not do? Argh, that needs an entry for itself alone, so I will pass on it here and try to devote a post to the subject at a later date. If anyone has anything they want me to include in my discussion, please let me know in the comments section. What helped you when you were actively ill? What did a helper or caregiver do that didn't help? What helps now and what doesn't?