I’m uploadiing a video to youtube as I write this which I will include in this post. I think it’s pretty boring and really to long for how little I say. We’ll see by the stats it gets. I felt like making a video but I really had nothing much to say.
The video making is at this point is pure novelty. I just like the fact that I can do it. I really haven’t figured out a way to make them terribly meaningful. I am not driven to speak about all this stuff at this point, though it’s a fantasy that once I’m better I will be doing public speaking.
I want to remind people if they don’t know me that I am physically disabled from iatrogenisis. I got sick through treatment with drugs I never should have been on. I am not depressed. I am very active within the limits my body allows and that’s quite apparent if you take a look at the body of my blog, how often I post, and the variety of topics on which I post.
On the other hand, I’m so tired that I now have to limit what I read even. I’m uber focused on just the issues this blog covers and really can’t read or digest much else. It’s selective brain functioning. If I waste it on anything else I don’t have the energy for the work I feel I’m meant to do. Sometimes that means I can’t read your blog. Or it means I don’t have the energy to comment even if I do read.
This frustrates friends and relatives whom I’m not even willing to speak to most of the time because it’s just too exhausting. My best friends get this and so it’s really not an issue. It is difficult for my husband as I’m not a very active partner in our marriage right now. He too, however, is swamped with his work and is facing possibly losing his job so it’s all very stressful and neither of us has a lot of time for the other emotionally.
That being said, he takes care of me in the mornings. For some reason I really can’t do the simplest of tasks in the morning it’s got something to do with the drugs clearing my system I think. In particular the Klonopin since it’s got the shorter half life.
So he gets me my cup of peppermint or ginger tea, my water and my breakfast, a smoothie made up of organic plain yogurt, milled flax seeds, blueberries, 2 tablespoons fish oil (tasteless) and two farm fresh raw eggs. It’s not a large smoothie but in the morning if I eat anything solid I get grossly nauseous so I sip on this drink for about the next 5 hours or more. I am not ready for solid foods until after 4 pm at which point I stop being nauseous and can at least 75% of the time help myself.
On some days he needs to help me do everything.
Oh, by the way, the home care people came and I will be getting physical therapy twice a week and an occupational therapist will come and help me set up my home so I can use it better. Simple things like a bench in the shower. I’ve not been strong enough to bathe. A shower is too much in terms of standing in hot water and feeling weak and getting in and out of the tub is also too much. The bench will be a very nice thing to have under the shower. Don’t know why I didn’t think of that. I’ve simply been rather filthy lately. Again, as I said, my intellectual energies tend to be uber focused and I can’t think about much else.
And now I ramble. So I’ll stop. Here’s the video. Bad as it might be as I continue rambling.
: 
: 
: 
: 
: 
: 
: 
: 
: 
: 
: 
Duane,
Thanks so much for what you wrote. It was very meaningful and encouraging to me, and made me think in a positive way about the future.
I “clipped it out” and put it in my notebook gadget that I use in my browser, so I can reread it in the future.
It was very thoughtful of you to take the time to write such heartfelt words. It really was.
Hope to keep in touch with you here and there in this corner of the blogosphere!
Sincerely,
Pete
What a beautiful voice Gianna!
Don’t be afraid of not getting out NOW.
One day you will start going and you’ll forget it all. That’s for sure.
Give yourself time.
Love,
Ana
That was great, Duane.
Pyrs (Pete),
From a comment you left (different post), you mentioned your daughter is 11. Our youngest son just turned 11 today.
I have always wondered what it would be like to have a daughter….I came home the other day, and the little girl (about four years old) from next door ran up to me to show me the valentine’s card she made for her mother….It occured to me that little girls are something very special….You must feel like a wealthy man when you’re with her…..
The last comment I made about not being able to wrap my head around the level of sadness you must feel….I thought about this all day, and wanted to say something else to you….I kept thinking about what it was I could say that would bring you some hope….and then, I found it…..
Your marriage may not have worked out, but your little girl will always be your daughter….She will need you when she starts college….someone to touch base with on the phone, and when she starts her career, when she begins to become a young successful woman….
And the day will come when she will come looking for you – to tell you the news, and ask you to walk her down the aisle in a beautiful white gown….
And, she will want you to be there when her first baby is born….And, to come visit and spend time with her kids…..
As long as you stay in touch, and show her you care…..You will never lose your daughter.
Duane
Pyrs,
As I read what you just wrote, I found trying to understand the depth of the loss you must feel…
I have a very close friend who had a divorce about ten years ago….His daughter has now graduated from college….He was close to her before the divorce, and remained close to her afterward….spending as much time with her as possible…..He was fortunate, but also he worked hard at maintaining a relationship with his daughter.
I know this must be a tough time for you. Hope you take good care of yourself – what time you do have with your daughter will be well-spent if you’re feeling in good health yourself, and you’ll be able to get the most out of those moments, and so will she.
My very best to you in what must be a very difficult place.
Duane
love this stuff, yes, Andy…
and god, yes, we need to listen to ourselves…conventional wisdom is often the very worst advice, especially as applied by psychiatry!!
I’ve always slept whenever I’ve wanted to…and not worried about it…that’s one part of my life they never co-opted…wish it had been more of it.
@Pyrs, glad you’re laughing again. Laughter is the best medicine, even if it can’t always be bottled and taxed properly.
@Gianna, I think you were clear in your video. My comment about the green tea was only about the green tea, not an overall comment about your video. I didn’t infer that you wanted to use chemicals to get by in every day life.
As a matter of fact, watching the video I thought to myself a few times, “what a strong and remarkable woman.” You may enjoy the irony from the first adjective I used.
@Daniel, I think you made a good point, good insight. And I think it’s important to listen to one’s body. Many times I’ve been told that I shouldn’t sleep during the day or take naps (Excessive fatigue was more of a problem when I was on Stelazine). Nowadays, I’m more apt to say, “Oh, I feel extremely tired. I think that means I need a little sleep, even though it’s not nighttime.”
Something I haven’t written about yet, noticed it several years ago, that I seem to become more depressed when I get tired. Let me emphasize that: I’m talking about depression as an effect of being tired, not fatigue caused by depression.
And that is another reason I’m less inclined to “force” myself to stay awake during the day. If at least some of my depression is coming from just being tired, accompanied by a slight or not-so-slight increase in suicidal thoughts, I think it’s better to ignore common psychotherapy beliefs, not worry so much about my circadian rhythm, and just take the darn nap.
Another strange thing about my sleeping pattern/fatigue habits/behavior is that if I do happen to stay awake, it will pass after an hour or two, for no apparent reason. Maybe it’s just because when I get tired my brain slows down, and I’m unconsciously “recharging.”
I think sometimes because my brain is so overactive, it causes me to become tired more frequently, or prematurely. Two years ago I found that sometimes if I just lay down, and get to point of almost falling asleep, to where my thoughts are very much slowed down, it’s enough that I don’t need a nap. Maybe the phone will ring at that point or something will require me to get up. A few minutes later and I will feel refreshed.
And other times when I get to that point, nothing external will disturb me but my thoughts will gradually start speeding up again, indicating to me that I’ve rested. I won’t necessarily feel “awake” or “ready-to-go” but I’m more likely to get up knowing that I probably had enough rest.
I’ve actually made quite a few “discoveries” about myself and have generally learned more about myself and who I am since I quit taking the Stelazine in 2003. I started it in 1992, when I was 19.
@Gianna, I’m glad you pointed out how much you enjoy conversation by your readers, else I wouldn’t have “hijacked” your post. 🙂
@Duane –
Having a partner who cares enough to provide encouragement is so HUGE.
For the past several years I’ve been reelling from the break up of my marriage/family and suddenly living alone during the week lead to a slow moving but devestating collapse. My empty house is filled with the ghosts of what used to be.
I remember when my ex-wife and my daughter lived here that just opening my eyes in the morning and realizing that there was a little girl sleeping in the house who depended on me was a motivating factor that helped get me out of the bed and off to work each day. And coming home at night and finding her running to me or hiding so that I would come and find her helped get me through the evenings… putting to her to bed and reading to her every night until she would fall asleep. And even though there seemed no hope for the survival of my marriage during that time, I certainly couldn’t spend all my days on the couch, and not go to work when people were walking around, especially my little girl.
Now all I have are my two cats, and they think that laying on the couch all day is the coolest thing ever. In fact, they even encourage me to do that.
So I am now going after the motivation and encouragement I need by finding support groups both in the flesh and here in the blogosphere. I am also paying more attention to my diet. And am seeking a change with respect to my pharmacological treatment plan.
Pete (Pyrs)
Daniel,
The comments you posted….These remind me of some of the things my wife does for help me….
It’s very easy not to see progress, because we’re too close to the various stages….in the middle of them….and, I think that sometimes they can best be seen from the outside (from a ‘distance’ of sorts)….
Anyway, she tells me things like “you’re doing better than you were last month”, or “it seems like you’re feeling more upset since this morning”….it helps me guage where I’m at…..
Thankful Gianna has someone who is there for her….And for someone in my own life as well…Not sure how I’d make it without my wife’s constant support.
Duane
Gianna,
Thanks for sharing the basics of your sitatuation and condition. Including some insights into your daily routine. I did not know what iatrogenisis and since I’ve been taking psychotropic pharmaceuticals for about 15 years, its good to know about it. I did some reading on it because of this post. The fact that you use your condition to educate others is amazing to me. It really is. Because in the past I’ve tended to simply retreat and tune out the world. What you have done with your situation has shown me that there is another way.
I appreciate you giving us the heads up that you might not be up to visiting some blogs or communicating so much. I know we all understand. Besides I will always at least have the first comment you posted at my sight. That was a huge encouragement to me. From my perspective you’re kinda like the big kahuna around here, the head honcho, the matriarch, the queen bee… well you get the picture.
With peace, love and kindness,
Pete
NG,
it’s okay…I didn’t feel misunderstood in any deep sort of way…I get that b-days are just another day especially if one has a varied and rich life and can get out whenever they want to.
Hi Gianna,
Yes, I suppose it wasn’t that I was unable….but I felt unable…we were just so stressed by everything going on that seemed outside of our control that we felt unable to do anything about it…that isn’t the same as physically unable. We had something fun planned and then some craziness from another person got mixed in and we felt trapped by this. I think we did see an end to it all in the relatively near future. We were exhausted but not in pain or nauseated and we saw it as temporary. And our life was certainly not drone like..quite the opposite.
Sorry if I misunderstood the gist of why it was so hard for you.
Daniel, I read this post in the middle of the night. I woke up this morning and I thought about how you might be dealing with Gianna’s (lack of better word) condition. I am happy to see you give her a perspective that I have only recently been able to see myself; that the thing we are going through (fatigue or pain) is a miracle, a respite from the long haul in a way, because –Gianna, he so right—it’s tired, it’s fatigue, but it’s not that (for example Seroquel) drugged fog. I believe that something DrX (blog author) left as comment for me is true: Unexpected breathers can be miracles. It really made me think. You are miserable and tired, but your body, just might be needing this healing time, and so take this time to just be in that–in the presence of healing. That’s powerful.
Pyrs,
your response to Andy is fine…I like it when my readers converse!
NG,
If I wasn’t UNABLE to really celebrate I don’t think the birthday thing would bother me…it’s the fact that basically my life is drone like….and I don’t get out and I’m confined to my house, day after day after day…
but again…I think I can learn to accept this because as I’ve said I have many good things going for me as well….
and I have faith that I’ll recover…
nonetheless…this has been going on a long time and it’s painful.
(Gianna’s husband speaking)
one thing this made me think about is the fact that you were tired and I’m not sure that you appreciate the value of being tired — which might sound strange. A couple of years ago you never got tired — you got drugged. If you were close to being able to going to sleep, you’d have drug-slurred speech. Now, you just get tired. This is part of the return of normality. Obviously, you’re tired way too much and it’s a drug-affected tiredness but it’s not the hit-with-a-sledgehammer-drug-induced tiredness.
Hi Gianna,
I like reading your blog and it is fun to see you once-in-awhile on Youtube too, but I would much rather read a blog than listen and watch someone. I just don’t have the patience. A Youtube has to be really, really good for me to have the patience for it.
I like birthdays, but I don’t get too upset if they don’t get celebrated with a big party or even a little party. This past year my husband and I were so busy with work and a trip and then an unexpected fiasco that we never did celebrate….you know I don’t think he ever did give me a present or anything…oh well, it’s okay once in a while.
@Andy – I am easily amused as is becoming obvious to everyone who has been reading all the comments I’ve been spreading around about how funny everyone is, but when you haven’t laughed in a decade or two, it has the same effect as caffeine has on Gianna. I’m hypersensitive to humort. So even though I think your funny, and Stan’s funny, and Mark Ks funny, I just can’t take all the funny. I’m laughing way too much and starting to think maybe I’m not depressed after all. Which is really upsetting because the whole point of finding this community of bloggers has been about me being at peace with my “mental identity.” You see it took me a long time to “come out” and just simply say it… “Ok mom & dad, family & friends, I’ve invited you all here tonight because I need you to know something about me. I’m… I’m… well, you see… Ok I’ll just say it… I’m deeeepressed. There, I said it. No its worse than that. And I might actually be Biiiii… polar. I’m not sure. But I just hope you can still love me for who I am.” After lots of tears and group hugs it seemed like everything was going to be ok. And then just when I was coming to terms with who I was along comes people like you, and Stan, and Mark. I mean even Susan is pretty funny at times. And now it seems I might actually have to go to counseling because I’m not so sure about my mental identity after all. And I might have to call another get together with my family and friends, and I so don’t want to have to do that.
Oh, that’s right this is Giannas blog.
and oh…at this point I’m way more into writing and frankly I get plain bored watching videos of people talking into the camera like I do here…truly…I have some people I really like….whose messages I am into and I just get sick of looking at their faces and listening to them…
call me old fashioned…I like to read…
I think youtube is for the new generation who probably can’t read and only have a ten minutes attention span…
okay, now…youtubers you can shoot me!!
I loved your comment….don’t apologize…
NO I don’t have a tolerance to caffeine..I’m hyper sensitive and it messes me up…BAD…
I never drink it except in emergency situations…or nights like tonight…
the thing is I’ve become sooo wasted and tired the spike in energy it gives me only lasts about an hour now instead of several…
but I only drink it once in a blue moon because it’s really bad for me and taxes me and tires me out even more…
I drink it when I’m interviewed for example, or if I really really want to do something like tonight…
but the whole point of the video and explaining that a I need to accept my limitations is also about not artificially inducing energy with a stimulant…(caffeine) because my body can’t take it…
anyway…I hate it when I’m not clear…
Gianna, I’m sorry my comment was so long. A bunch of words to read kind of defeats the purpose of you not reading, and obliterates my well-intentioned thoughts.
Video-blogging is the wave of the future. I’m not much of youtube user, and only registered there a couple weeks ago. I noticed the link to reply/comment by video. I didn’t fully comprehend that feature until a show on NPR (or MPR) that talked about the youtube feature, and the guest pointed out that some people are more comfortable or express themselves better when speaking instead of writing. Of course that hadn’t occurred to me because I’m such a better writer than speaker.
You mentioned green tea — Is it possible you’ve developed a tolerance to caffeine? I was sure it must have crossed your mind, but I wanted to ask. I tried “decaf” green tea once. I noticed later it had 5mg of caffeine, which actually spiked me up a bit, as I had been avoiding caffeinated beverages at the time.
As for visiting your friends blogs, I want to tell you that I won’t get frustrated if you don’t visit, and that I understand what it’s like not to be able to read and write because of physical limitations.
As a matter of fact, I want to vehemently discourage you from visiting my blog again. Please don’t visit even if you start to feel better. You could try, sure, but I’ve blocked you by IP address. I’ve also rewritten the site software and developed a new programming language that will be able to block you by name. No one whose name is “Gianna” will be access my web site. It will only lead to a 403 forbidden error page. Blocking users by name is only the first step. Soon, I’ll be blocking users by age, height, and hair color. Because I’m not a racist, I’ll not do anything involving skin color or sexual preferences. Everyone who is a brunette will be blocked equally. Everyone who is 5 feet 10 inches will have the right to pursue life, liberty and happiness, but otherwise not be able to view my web site (I’ve even left the “web site” field of this comment form blank, to prove my sincerity).
I hope my efforts will help you in your recovery, Gianna, and I do have one P.S. (because I don’t know when to quit). I’ve decided to honor and celebrate your birthday by picking that day as the day of the year I will do my dishes. It will be easier for me to remember and therefore, as God as my witness, I’ll never go hungry again (Paper plates, plastic spoons, ’nuff said).