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Daily Archives: January 27, 2015
What I’m Working On Now
Last Thursday, I interviewed at NAMI Orange County to participate in two of their programs: NAMI Ending the Silence NAMI Ending the Silence is an in-school presentation about mental health designed for high school students. Students can learn about mental illness directly…
Who Cares for the Caregiver?
Below is my latest Huffington Post blog post. I thought the message was a good one (not to toot my own horn!), so I decided to share here too.
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Mark Lukach's article My Lovely Wife in the Psych Ward has been making the rounds on social media for the past few weeks. It is an honest and painful read. As the title implies, Lukach writes about his experiences with his wife's psychiatric problems. Her diagnosis: depression with psychotic features. Reading it, I was struck by the depths of his love and devotion to his wife. And I was also concerned for him and for all caregivers of the chronically ill.
Yes, psychiatric problems can be difficult for the mental health consumer, but the consumer does not experience their symptoms in a vacuum. Their loved ones, family (spouses, children, extended family) and friends, are also impacted. As a bipolar sufferer, I try to be cognizant of how my illness impacts my loved ones. I've also tried to think about what I would tell other consumers' loved ones as well as my own about self-care.
So this article is for you, the caregiver.
Here are some tips to ensure that you effectively care for yourself while providing for your loved one:
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Mark Lukach's article My Lovely Wife in the Psych Ward has been making the rounds on social media for the past few weeks. It is an honest and painful read. As the title implies, Lukach writes about his experiences with his wife's psychiatric problems. Her diagnosis: depression with psychotic features. Reading it, I was struck by the depths of his love and devotion to his wife. And I was also concerned for him and for all caregivers of the chronically ill.
Yes, psychiatric problems can be difficult for the mental health consumer, but the consumer does not experience their symptoms in a vacuum. Their loved ones, family (spouses, children, extended family) and friends, are also impacted. As a bipolar sufferer, I try to be cognizant of how my illness impacts my loved ones. I've also tried to think about what I would tell other consumers' loved ones as well as my own about self-care.
So this article is for you, the caregiver.
Here are some tips to ensure that you effectively care for yourself while providing for your loved one:
- Don't neglect your own needs: get adequate sleep, eat regularly, and keep up with your own health needs (such as doctor's appointments, taking any prescribed medicine, exercise, etc).
- Invest in self-care. In other articles I've written about the importance of self-care for the consumer, but caregivers also need to make self-care a priority. Self-care is whatever you do that puts you first and soothes you: listen to music, make a spa appointment, go for a walk, read a book, eat your favorite meal, take a vacation. In short, do something you love.
- Seek out support groups. There are lots of support group organizations. There's Depression and Bipolar Support (DBSA), National Alliance on Mental Illness Family Support Group (NAMI), Nar-Anon, and Al-Anon. A simple Google search will yield even more organizations.
- Find your own therapist. I don't mean couple's therapy or family therapy. But a therapist all your own. Everyone can benefit from having an ear to vent to and problem solve with.
- Spend time away from your loved one. Yes, you are entitled to take a break.
- Learn your loved one's signals. They might not always know when they're headed for an episode, but if you've lived through a previous episode or hospitalization, you probably know what to look out for.
- Be patient, understanding, and kind with your loved one. Everyone needs extra nurturing when not at their best.
- Be patient, understanding, and kind with yourself. You won't have all the answers. You won't always know what to say or do. You might get frustrated or overwhelmed. Don't beat yourself up.
- Know your limits and enlist help when you need it. Help from family, friends, mental health doctors and providers. You don't have to think of yourself as a fixer.
- Specifically for romantic partners:
- Depending on your loved one's diagnosis, he or she might have mood swings or easily get angry or irritable. Try not to take it personally. With your partner, create coping strategies to handle emotional outbursts.
- Again, depending on the diagnosis or even as a side effect from certain medicines, your loved one's libido can be impacted. Both extremes are possible: too much of a sex drive (hypersexual) or too low of a sex drive. Be patient. If a low sex drive is a problem, find non-sexual ways to be intimate.
- Be sure to keep the lines of communication open and honest. Listen to your loved one's concerns about his or her care, but also make your concerns known too.
Posted in Read Along
I Have No Idea How I Feel
I woke up this morning, sad as usual and dragging myself out of the comfort of dreaming.
Right now I have no idea how I am feeling. I am by myself and that always gives me a low gauge on my emotions. Interacting always brings out how I am actually feeling. Usually Jim brings out the best of me even if I am depressed.
On a good note I have gotten a lot done today.
- I got some painting done.
- I did a drawing.
- I cooked some sausage for dinner.
- I did some laundry.
- I put laundry away and tidied my room.
I think that puts me a little outside of depression but it’s only 3pm and I’m bored and lonely. Laundry takes a while to be done and do the rest. I ran out of paint and can’t work on my painting and dinner isn’t for a few hours to finish it. I think tomorrow I’ll start working out. Today I am gonna just watch some TV and wait for hubby to pick me up and take me to Michael’s and the house.
Moods are weird. Wish I could read them better.
The Tipping Point: So Long, Able Body
It’s not here yet. I’m not there yet. But it’s getting closer. I have to stay alert, lest it overtake me like it did to Dad, and leave me too crippled to decide my own fate.
That’s what happened to Dad. It happened over a period of years. I could see it because I lived far away, and when came to visit every 3 or 4 months, I could see the changes. But one day, or so it seems, he was frozen in thin air. His body had just frozen. He could walk, for a while, with a cane. His hands would not cooperate enough to operate a wheelchair, so he shuffled it around using his feet. It was good exercise, I thought.
He tried to keep writing–he was a wonderful man of letters–but his pinched nerves refused to work his hands. It cost his soul a lot, not to be able to write his memoirs. (No, he wouldn’t do all the alternative things to physical writing.)
Then one day his legs stopped working. I think he had a stroke. He had lots of them, and caused him to have difficulty speaking, kind of like Moses, only different.
These few words about Dad serve as a preface for what I am about to tell you.
I have been having excruciating pain in my neck, due to arthritic vertebrae. The holes in your spine where your nerves branch off your spinal cord and end up moving everything and feeling pain and whatnot–those holes that belong to me are getting calcium deposits on them, which is squishing and poking into the nerves in my neck. Plus, the spinal canal (you know, the canal your spinal cord runs in–helpful, ain’t I) in my neck is getting narrowed, squishing the spinal cord itself. I guess that’s why my arms ache and tingle all the time.
Today I drove the hour-and-a-half to see a nurse practitioner at the spine clinic where I get things that so far have not helped, like an injection of steroid stuff into my neck (that was fun) to medicines that allow me to sleep for three days at a time between doses. Who needs pain meds when you’re fucking asleep?
For the past month or so my neck has been killing me to the point where bending over to pick up something on the floor gives me a jolt of pain, 8-9, sometimes 10 on a 1 to 10 pain scale. It’s all I can do to hurry over to the bed and pack myself in pillows so I can’t move. After a while the pain lets up, but not all the way–enough so I can get up and take some acetaminophen. I don’t do opiates like Percocet, because they make me itch. Every once in a while if nothing is helping–immobilization, hot packs, arnica oil, CBD oil–I’ll take one of my carefully hoarded Tramadol, a semi-synthetic opiate that relieves my pain just down to the barely tolerable level without making me dizzy or itchy.
So I saw the nurse practitioner at the spine clinic, and unlike the actual doctor of the clinic, the nurse practitioner had some very good and practical suggestions, like physical therapy with massage and electrostimulation, and a hardshell neck brace for when I have to do anything.
Since she seemed to know what she is doing, I asked her point-blank: what is the natural history of my disease? Us medical people call the usual course of an illness to be its “natural history.” I like that, because I have always loved Nature, and have been an avid Naturist–no. no, I mean Naturalist–all of my life. So I asked her about the natural history of my disease, and she said “Not good.”
“What do you mean, “not good”?
Well there was a point where surgery–
“Surgery? What, they take a Dremmel (an all-purpose engraving and grinding tool) and ream out the foramina (holes where the nerves pass though)?”
Yes, in fact.
“How good is the surgery? What’s the success rate?”
She shakes her head. Not good at all, she says. About like lower back surgery…….which stinks.
But, she says, you might consider it when your hands get too numb to work.
My whole body, including my mind and soul, was numb as I walked out to the parking lot. “When,” she had said. Not if. When. I kind of thought that’s what’s in store. My left arm, the one where the nerves are more severely damaged, “goes to sleep” quite a lot, and it aches and tingles pretty much all of the time. It’s definitely progressing.
And then we come to my right shoulder. The end of my collarbone that attaches to another bone in the shoulder is so gnarly with arthritis that my last steroid shot not only did nothing, but the difficulty of getting the needle into the joint (because the joint is almost closed up) has made the whole thing worse. I have constant pain and limited mobility, and probably will end up having the end of that bone sawed off, which is supposed to restore mobility.
I have firmly and completely decided that I am not, God willing, going to let myself go the route my father went, completely dependent on others for years. And unlike Dad, I don’t even have anyone to care for me should I be suddenly a body with arms that don’t work. I would be in a nursing home until I died.
I’m watching very carefully for that tipping point, the one between independence and dependence, and praying it doesn’t sneak up on me.
As one of my Physical Medicine professors used to say–he was in a wheelchair due to MS–everyone is TAB–Temporarily Able Bodied. And so it is, with me, anyway.
I used to love to swing an axe and split wood all day long, or take on an unruly horse, change a tire on my 3/4 ton Dodge Cummins Diesel truck…no more of that for me. I had to trade the truck in for an easy-to-drive car. My hands only hold out for so long at the keyboard before they seize up and I have to stop. I can’t play my banjo anymore.
Life is getting less and less attractive to this formerly physically active person. I spend virtually all of my time in my recliner, which is the only place my body doesn’t scream at me. Hell, my place has not been vacuumed for over a year, because I can’t look down or look up or lift anything over two pounds.
It’s getting closer. I have to be careful not to miss the tipping point.
Posted in Read Along
31 days of bipolar: 8
Here be the full meme.
The trigger du jour is self harm. With a side of bitching and whining.
8. What do you dislike most about the disorder?
Mixed episodes/states. I am very grateful to have been diagnosed, I’ve always had ‘em and ye gods I am relieved to know it isn’t a personality defect. Turns out I’m a nice person with involuntarily crappy moods.
What they’re like now, is revolting, but at least I can do stuff about it once I know that’s where I’m at. Before, those would be the times I got angry and agitated and did fucking stupid things (like punching my head and throat). Bad decisions made under the influence of a mixed episode became even worse decisions, with worse consequences.
I mostly get the agitated depression version of mixed states, but not always, I do agitated mania too. Go me. Suddenly it feels as though my skin got so uncomfortable that it keeps trying to crawl right off my flesh. I expect it just wants a quiet life. Meanwhile, my brain tortures me with the mistakes I’ve made, shitty things that have been done to me and enormous (literally abysmal) despair about the negative stuff in my life. It’s when I feel the least like myself and it’s when I like myself least. In many ways, it’s like having a supersized, extra strength and turbo boosted form of a PMS mood at its worst. No. Fun. At. All. Not even a little bit.
There are times when I can’t stop my teeth grinding (I can never keep my jaw from clenching). I get so irritable I want to freak out at anyone who disagrees with anything I think. It feels as though there are a lot of knives in my skull, slashing my brain. They are thrash metal and jagged edges. They are the proverbial things that end in tears.
So far I have worked out that during the day during the episode, I have to get some physical exercise and stay busy. When there’s anyone with time and patience around to talk to, that helps chill me out too. At night, when it all feels even more stupidly extreme, I take a sleeping pill if I’ve got one. My life is so slow and calm here and that helps a lot too. If I’m not seeing people, I can’t cause damage. It’s also one of the main reasons I gave up alcohol and cut down on caffeine. Girldog and Hyaenadog help a lot by being their sweet, fierce, funny and unconditionally loving selves.
But it’s not like they can be cured, so when they arrive, they’re on fire and roaring and they take no prisoners. They are angry, despairing, volatile, unreliable and unpredictable. For the decades before diagnosis, they made me ashamed to be me.
My friend and fellow blogger roughghosts suggested that what I was going through some months back might be a mixed episode. I chatted to my psychiatrist, she agreed. Phew. Apparently I’m not a total asshole. I can live with partial asshole (well, as long as it’s not literal).
The Manic Author Part #2
So I left myself writing 500 or so pages of a fan fiction story of a guy I didn’t care too much about at this point. I was heady with the thrill of having groupies follow me around on the website breathlessly anticipating my next romantic installment. However, romance can only last so long. Really, 500 pages or so is a lot of romance. A lot.
I got into some kind of manic argument with some other woman on this fan fic board. She accused me of plagiarizing part of her story. I was pretty indignant because 1) I did NOT plagiarize anything 2) I didn’t need to plagiarize anything as I considered myself to be a better writer than she was. (Remember, I was manic, and had a pretty big ego at the time.) Anyway, as I recall, this whole thing took the wind out of my sails and I stopped writing.
Now throughout this process, people (women actually…I don’t think there were any men on this board) suggested that I should write and publish something. Some of them even suggested I should publish my fan fic. Whoa! NO one would want to read that but die-hard fans of this guy. But anyway, I figured I must be an excellent writer with 500 pages under my belt of romantic fiction. I knew I could do it. However, instead of writing some nice romantic novel I decided to write ANOTHER fan fic about this guy. I didn’t publish it on the board…I just wrote it for myself and maybe a friend or two… things are kind of blurry here.)
I think I wrote again about this guy because I knew my character. The heroine changed but I didn’t have to mess around with the guy too much. The big difference in this story is that there was a real plot, a twist, a resolution and the whole thing. Instead of meandering on and on about true love and the noble character of this guy, I actually really developed lots of characters in this story. I do think if I messed around with this story and dropped the celebrity out of it and replaced him with a fake celebrity this would be a decent story. Not to publish, but to throw up on a fiction website.
About this time, I fancied myself somewhat of an author. I joined a writing group in our town and started going to the meetings. I met this girl that lived pretty close to me and we carpooled. She had actually published some stuff, so I was in awe. I got my hands on one of her books and started reading it. Wow! It was pretty darned smutty. I mean seriously. It was strange, because she looked like anyone you’d see on the street. But she had quite the imagination.
About that time I started writing A Calling of Light. (Once again, not sure of the timeline in here, I was still pretty hypomanic and was doing lots of things.) You know how people always say “Write what you know!”? Well, I knew about Leenie. Part of her was me. But she was fictionalized plenty. This book just flowed. Just like my other stories. It just poured right out of me. I didn’t think about plot (maybe I should have!), character development or any other old thing. I just wrote and wrote.
I was working retail at the time. It was part time, and something I could do while manic. I kept writing and one of the girls at work mentioned that she knew an editor in New York. She offered to show her the first chapter or so of my book. Of course the book was unfinished, but I sent off the chapter anyway. And the editor liked it! She said to send it to her in the next few months when it was done.
Few months? Suddenly I panicked and got writer’s block. I could hardly write anything and time went by. By the time I cobbled together a bad ending eight months had passed. I was too embarrassed she’d forget who I was if I sent it now.
But I still had fun with the book. I entered it in contests. I never won, but got some really positive feedback. And here I have to tell you a funny story about contests.
My best friend is a writer. So we somehow wound up judging or giving feedback on some short stories. We went off to a cabin prepared to act all academic and get these stories objectively fixed up and ready to go. So we started in. And wow, were these stories terrible. I mean bad. We started laughing and could not stop. We were screaming hysterically and could hardly get through them. But we tried. And that was one of the funniest times in my life.
There was one story that was decent but had some serious issues here and there. We gave a bunch of recommendations on how this person could fix it up. We practically re-wrote the thing.
Later on, this whole group had a banquet. They gave out awards for the best story. And guess who won? The story we re-wrote. So we didn’t feel like crappy writers, after all.
Anyway, it was around here that I started crashing. I hit bottom bad. And I put my writing away. I not only put it away, I threw it away. I didn’t want to see it anymore and I didn’t think it was very good. Especially the fan fic. I was embarrassed I had written it. And I switched computers and lost it for good.
My friend had a bit more foresight. She figured someone would want it sometime. She had most of it on a flash drive. The long fan fic was coming up in a weird format, but the others were good. She sent me A Calling of Light and the second fan fic (the that had the plot). I sat there and read them and cried. I vaguely remembered the stories, but could not believe I had written them. They were pretty good.
And there is the story of the manic author. I’ve written nothing else but this blog since then and that was ten years ago or so. Long time.
I’ll put some more of Leenie’s story up on the other page here if anyone wants it. I know a few of you did, so we’ll see what you think. Leenie is a neat person.
love,
lily
20 Days of Valentines—Day 1
As always, this is available in my Etsy shop. Just click the image to go there.
Posted in Read Along
Fall Out Boy – Centuries
If your feeling like you need to ROCK OUT! Don’t let your illness take you down! FIGHT! FIGHT! FIGHT!
Has My Universe Come Crashing Down Or Is This A Life Lesson?
About 2 weeks ago I got a letter from SS Benefits Determination department indicating that my benefits would be ending in March, including Medicare which means Medicaid would stop; the whole house of cards that I have lived under for the last nine years would crash to the ground. I have appealed the decision as […]
The Inner Conflict of Anxiety
I find myself at war with…well, myself, on a daily basis. The anxiety has metastasized to a point where I find it hard to breathe all of the time.
My kid is at school. Yay. I get a break.
My kid is at school.I sit watching the phone waiting for a call to announce her latest ailment de jour.
I wait for the mail to come with bated breath. The mail comes and I am relieved or freaked out more.(Yeah, I got tired of waiting for snail mail and looked at my power bill on line, YIKES!!!!, kinda glad I didn’t open an envelope like that or I’d be avoiding my mailbox for weeks to come to avoid another mail induced panic attack.)
The trash truck is outside. Did I remember to put out trash? Yes. Oh, wait, better check. So I check. And I check again.
Are the cats fed? Better make sure because my focus and memory are so impaired I may have fed them ten hours ago and the dishes are empty.
Were my kid’s shoes on the right feet this morning? OMG, I think I forgot to feed her breakfast. No, wait, I told her to have a pop tart. No, wait, pancakes, I fed her pancakes. Was that today? OMG, what if it wasn’t today and i sent her to school hungry and she tells them and I am on charges for being a neglectful mother?
Oh no, the cable guys are about, did my internet payment not go through and they’re cutting off my service? No, I paid that, I pay it like clockwork on the first of the month when my money comes. But what if the office people messed up or their computer credited the wrong account?
Round and round it goes, day after bloody day.
This is a sucky way to live.
Your mood lifts, you feel more stable…
But your anxiety is such that because you heard a fire truck drive by the night before, you’re terrified to leave the house lest it catch on fire and you be gone…
Anxiety is like a cancer. Even treated, it spreads.
And I am sick of it being made to be some behavioral issue.
I don’t like living this way. My own brain is my worst enemy but I can’t walk away and shun or avoid it.
So I am trapped, constantly at war, my mind a battlefield littered with the corpses of my dreams of a normal life where my brain works properly.
How I wish my mind and the anxiety receptors would call a cease fire.
