A deadline is negative inspiration. Still, it's better than no inspiration at all.

~Rita Mae Brown
Trust only movement. Life happens at the level of events, not of words. Trust movement.

~Alfred Adler


On The Bedside Table
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    by Joe Hill
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Matt Fitzhardinge - Alaskan dogsledding header picture


The Easy Stuff

You know, I'm not really sure what I was hoping to gain by talking about this. Strangely, I guess I just wanted people to be more open and willing to talk about depression and purely on that level, it failed.

However, why on earth would I be expecting anything different from what has been happening for hundreds of years? Silly me.

The people who have always supported me, continue to. Sure, there were a couple of lovely comments on facebook but really, and this is one of the issues I have with facebook, the easiness of that means absolutely nothing at all.

Facebook makes us feel that we are closer to people. Facebook takes the things we say, the things we want others to "hear" and overwhelms those things with utter banality. Facebook makes us think we have friends, when we don't. And facebook stands in, and badly, for real, actual communication.

I've been spending a little time each morning writing emails to keep in touch with people and I find the time and effort is much more valuable and real - at least to me.

I headed out a couple of days ago for my repeat mammogram and ultrasound - a follow-up I usually go though every year - and the ultrasound part of it took a long time. A way longer time than usual and they went up into my armpit. The tech left to talk to the radiologist and came back to tell me that, "He is not overly concerned but after further review, there will be a request for more tests."

MaJen has survived breast cancer twice and was insistent that she accompany me so on the way home we chatted about the whole thing.

My initial reaction is that if something is wrong, I'll end up with chemo and lose the dreads I've spent so much time cultivating and that sort of pisses me off.

My second reaction was this: "They will cut it out or cut it off, poison me a little, I'll feel shitty and then I won't." And I thought, wow, that seems so straightforward, so simple, so easy. The last 8 years of my life have been nothing like that - it would a relief to have something wrong with me that the doctors can 'fix', instead of this horrible daily struggle to live through the pain, to find a way to enjoy even just a little bit of how I live now, to keep my head above the waves.

 It doesn't even seem ironic or even a little bit weird that my attitude is, "Wow, Cancer would be so easy."


Why Am I Talking About This?

In 2000ish I went to my doctor in Calgary and told him that I felt horrible, that I was irritated, fatigued, etc etc and could we figure out what was wrong with me? We ran tests and about a month later he sat me down and told me that he thought I was depressed. The conversation went something like this...

"What? No, I'm not. There's something PHYSICALLY wrong wit...h me."

"You're right, Jen. There's something physically wrong with your brain - a disease."

I walked out, totally pissed off that he couldn't see there was something WRONG. It was a year before I went back to him and told him that he may be right. Then it was two more years of trying medications until we found one that worked. By then, I had a whole other shitload of bad behaviors that I'd used to 'help' and 'compensate'. I'm still struggling with some of those, even after all this time. The injury and chronic pain since have only made it a whole new ballgame and even more difficult to treat me.

And it's been a LONG time. That's 14 years and trust me on this - there are medications that don't work, there are 'okay' medications and there are very bad medications. I was on one once that made me fall asleep, face down on my keyboard, at work, all the time. I lost that job.

There was one medication that one day when I was walking down the street in Calgary and someone bumped into me and I actually stopped walking so I could contemplate if I would feel better if I went after the person and pushed them in front of a car. Seriously contemplate. We got me off that one pretty quick.

I was actually in a really good place for a long time and then my GP in Victoria, after the injury, put me on Cymbalta because he thought it would help with the pain. It didn't but otherwise, it didn't really seem so bad.

I used to write and I have all of my life. Some of you know this because I met some of you that way, some of you may remember this from high school. When they put me on Cymbalta, I stopped writing. I thought that maybe it was the price I had to pay for feeling better.

So, now, I'm weaning off the Cymbalta and suddenly, I can kind of write again. I'm not really functional in most other ways but oh.... I want to write!

I find myself in the unique position right now to be able to look back over the last 14 years, parse them into something resembling insight and talk about things I couldn't talk about at any time during those years. So I started to think, how can I use this to help other people? You could have asked me (and probably did) how you could help - but I couldn't have told you. And chances are, your depressed person can't tell you either.

How Can You Help Your Depressed Person?

Please understand that I am not actually asking anyone to do this and I'm not slapping anyone on the hand. I've been specifically thinking about these things so that I can talk about them. And, I only speak for myself here but I think if you have a friend who's struggling with major depression, you should also be using your intuition and your knowledge of the person to make yo...ur own decisions on what would be appropriate and/or helpful.

I'm going to make this a 'part one' sort of deal because I just don't feel like talking today but I was just reading something on the Oprah website and I figured this was a good place to start because I mostly do not agree with it. The quote and then my reasons....

"Don't let a loved one isolate him or herself, Dr. Saltz says. "Push them. Say, 'I know you don't want to, but I'm not taking no for an answer. We haven't talked in awhile. I'm coming over,'" she says. "They need connection. If you're busy being polite, it won't go well." Face-to-face conversations are ideal, Dr. Saltz says, because depressed people aren't usually very verbal. But if you are in a long-distance situation where you can't be face-to-face with that person, Dr. Saltz says to make regular phone calls. "Be persistent," she says."

oohkay. So, PUSH ME? Be persistent? No, what you are going to do is annoy me and then not only will I not answer or return your calls, I probably won't answer the door if you just show up. Result? You're upset, I'm upset and well.... we've accomplished nothing.

Please don't force me to "go out". Think of it like this - You have the flu. A nasty flu. You're in your jammies, you haven't showered, you feel fucking horrible, you're bitchy and you just want to lay on the couch in your safe place and wait until you feel better. Then I come over and "won't take no for an answer" and drag you to the mall for shopping and coffee. Now you're feeling fucking horrible and you're self-conscious about how horrible you must look, you're surrounded by masses of people who just make you more irritated and I'm pushing you to 'window shop' with me. Dude, do you feel better? Wasn't that fun? Let's do it again next week if you still have the flu.

Personally, I hate hate hate it when the phone rings and suddenly I'm supposed to talk to someone. I actually need to prepare myself to say more than yes or no. So, sure - call me. But maybe call once a week - at the same time - so that maybe after a week or two, I'm thinking ahead and preparing myself (because talking to anyone is hard) and now that I've had some time to work it into my 'schedule' and I'm expecting your call - I will pick up the phone and talk to you.

I'm not being an asshole here - you may think I'm just sitting around and waiting for something to make me feel better (well, I kind of am but you won't be it - that's why I have professional medical help and you should be supportive of seeking that help with your depressed person) but what I'm actually doing is trying to stick to a schedule that allows me to accomplish things - small things and maybe the only thing I'm trying to accomplish is to feed the cats and do the dishes - but you are popping my safe bubble with unexpected demands. The result of me being able to expect a call at a certain day and time - we talk. And this is good for both of us.

I agree that connection is important but MaJen came over last week when Isabeau went missing and I made her a cup of tea and then just stared at her until she left because I was so devastated that I couldn't interact at all.

If you want to see me, let me know what day and time you're coming over and take me for a walk - tell me what you are planning. If I'm prepared and expecting it, I will more than likely be okay with it. But, let's just walk around the neighborhood. Don't expect me to talk and be okay with the silence. Result? I don't have to get 'ready' to go out in public and I don't feel any pressure or expectation of having to dredge up some energy to interact. We spend some time together and this is good for both of us.

I've lived here for 4.5 months and there are bald eagles on the river and possibly a bear that visits every year, right where I live, but I haven't gone to see them. I love eagles, I used to work with bears. Why haven't I gone? Okay, I have a cool neighborhood but I'll bet that you do too and so does your depressed friend - you just haven't seen it.

Why are we afraid to talk about this?

There's two sides to this question. What am I, the person with the brain cooties, afraid of and what are you - my friends, acquaintances and society in general afraid of?

I think I've always been afraid that people would treat me differently. That people would question or ascribe my choices and decisions to my "problem" and therefore see them as wrong/ba...d/not rational or frivolous. That people would be tentative, afraid of saying the 'wrong' thing to me, that people would back away. But people we don't know, nasty people, they say mean, cruel, wrong things to us ALL THE TIME regardless of whether they know us or not. Maybe, I just need to confront that fear and see it as an inevitable part of life - I'm sure people with other diseases feel the same way so what is it about depression that makes it so different? (I think I answer that farther down, actually).

But, here's the thing - I would say that 80% of the decisions I've made in the last 7 years have had their basis in physical pain. Then there's the slice of decision making we ALL do - based in fear, in love, in worry. Then there's the decisions made based in depression - maybe 5-10%. In fact, the one and only time I decided I couldn't live any longer, in Dec 2011, I called 911. I'd say, even a decision I make based in depression, is still a reasoned, rational, good and valid decision. So, my decisions are based in WHO I am, not WHAT I 'have', not WHAT you do.

Maybe that's just me and my decision making process but the simple fact of the matter, no matter how much you want to mock it - I have an anchor that holds me to this world - my cats - and I won't leave them because I believe we are all better off having each other than we would be without. As much as we'd all like to think that our loved ones anchor us, I don't believe it's the norm for people with depression. And part of the fear for us is the possibility that what small anchors we have will leave if we tell them about us. And I believe that is one of the most dangerous things about it. Depressives need an anchor.

So, what does this mean? I've obviously decided that I no longer care what you think of my decisions. Or my actions. Or the way I deal with my issues. Or, maybe, if you've watched me struggle all these years - maybe it's time to just stop pretending I'm successful at hiding it. You're all thinking those things about my decision making regardless, right? However, can you support my decisions? Do you love me enough to tell me when you think I've made a bad decision and can you weather the storm (if there is one) while we talk about it? Another way we are afraid that we will lose our anchors.

I also think that as friends or as a society we need to really recognize the following point - we're big boys and girls and we're intelligent enough to know when we need help and we owe it to OURSELVES to get it. There's certainly no shortage of help available, good and bad. And yes, I've let friends go when I see a refusal to get help and I know that I can't be a party to it anymore. I have a dear friend who is struggling with horrible pain (and is not as fortunate as me to have financial help) who says, "OF COURSE I'm depressed. Just fix my pain and I'll be fine." His decision is to refuse treatment for the depression. I'm not saying that his decision is wrong, per se, but only that I am no longer able to support that he sees it as a symptom that will magically disappear. That I can't support his refusal to get help. Even if his pain was magically gone tomorrow, he will still be so overwhelmed by his depression that I doubt he would continue to function and even if he could - almost four years of this has already destroyed everything 'normal' in his life. I'm tough but I can't carry him as well as myself for any longer.

So, if we (you and I) have a difficult discussion - is one of your fears that I will kill myself? I see difficult discussions that I've had with friends as information, as caring - even if I see it as misdirected or downright wrong and even if it ends the friendship - and sometimes, the clarity of a discussion, or it's helpfulness, is something I don't see until farther down the road.

Would you rather not have the discussion and take away from both of us something valuable or would you rather take the chance that you may "cause" me to off myself? And here's the hard truth, YOU, the things you say, the things you do - can't make me do anything. If you say something harsh to me, then I either get it, work through it or put on my big girl panties and get some help -- or I don't.

If my response to difficult things (ie: life) is to end it, then maybe that was my version of putting on my big girl panties and in the end, that has nothing to do with anyone else.

I have known people who just couldn't fight anymore and so have killed themselves. I don't see that as MY failure. I don't see it as THEIR failure. I see it as a decision they made after years of struggle didn't yield any success. I don't think they just gave up. I think they decided it was time to go and, although I know it is very hard to understand from a non-brain cootie perspective, I respect their decision.

We also have to acknowledge and accept that some people's personalities demand that they be a victim. I've walked away from people like that as well - because, again, hard discussions and big girl panties.

People with depression are just like anyone else with a disease - be it cancer, diabetes, fibromyalgia, etc - and that's how they should be treated. We owe it to ourselves and to each other to treat them that way.

Psychologist Love

I had a long chat yesterday with Brian - Brian is my lovely 70 year old psychologist in Chilliwack - and Veteran's Affairs has been kind/progressive enough to allow us to Skype our sessions until I feel up to transitioning to someone here. And I need to, there comes a point, inevitably, in all types of treatments where you get to a place where someone different is needed, where we would respond t...o a different approach. However, he and I have been through a lot in the last two years and he knows me so well that to contemplate starting over with someone new (and maybe having to reject one or two) is exhausting beyond belief. I don't WANT to tell my story from the beginning again. I feel sometimes that all I do is tell my story and, if you're sick of it, then imagine just for a second how fucking tired I am of it, too.

I have, Micha Marie, blogged a little bit and I may do some more. I find that Facebook seems to encourage us to lose our real voices in favor of quickfast superficial interactions that make us feel (falsely) that we are connecting with the people around us. But, again, there's a part of me who wants this to be easy to read (if you want) and accessible. If you have things you'd like to say to me or questions but don't want to comment, please email me. I find that I have times during the day where I can read, respond and deeply appreciate communication.

That, in a way, takes me back to honesty. We assume that people know us well, that people know us in a WAY that we want them to. I certainly spent the first 5 years going to a GP whom I thought knew me well but now I know, had absolutely no understanding of what I was telling him. I like to think that people around me and my caregivers understand that for me to actually say something about how I feel, then it's really quite bad but I am starting to understand that this isn't the case. I look normal, I can pull it out of my ass to act normal when I have to, I don't favor my injured side and I try to be cheerful and kind to the people I encounter during the day. But, if I've seen you in the last few years, it's a good chance that I didn't hear a thing you said to me - because the pain is there all the time and unfortunately, doing things, getting together with people, travelling and then having to actually be upright pushes the pain past a point which takes all my concentration just to be there.

Brian and I talked about the ol' "fake it till you make it" adage that tells us that if we are unhappy, then pretending to be happy will eventually reap rewards. And, while that may very much be true for some people, I think it's not something that works in the case of a major depressive disorder. For a long time, that 's what I did and here and there, some of the frustration and pain would come bursting through in ways that people may think out of character for me. And, maybe it was, or maybe faking it just made the real bits, the hard moments and the baseless irritation outbursts that much more 'large'.

Neither is true of who I really am and how I'm really feeling. Wanting to understand, wanting other people to understand and finding a way to integrate all these bits into a real, productive, sustainable whole and become the person I 'think' I am all the time - in Brian's words - "is hardwired into you, kid."

A couple of things I've been thinking about

1. This has been a long journey for me and through the last 7+ years, I've been medicated for it. Sleeping pills, painkillers, antidepressents. Doctors like to medicate, patients like to think that a pill will magically make everything okay. And while sometimes that is true, there comes a point in a long term situation where it needs to be decided if ...there's a benefit or not. It's not only a frightening thing to contemplate, let alone attempt, but there are multiple effects of withdrawal that make the attempt almost impossible, added on top of the actual long term issues I'm dealing with.

2. I'm incredibly frustrated. I've been through a lot of physical and emotional states over these years but for the most part, I kept trying to move ahead - learning new things, starting my own business, finding ways to be productive. Right now, I can't.do.anything. And I'm letting myself and other people down. Not only that, but I feel like I've completely lost everything I fought so hard to gain. Sometimes, that's all I can see and sometimes, I couldn't give a red rat's ass about any of it.

3. I'm not deranged. I'm not wandering around the park in my underwear shouting at people. I don't think my cats are telling me what to do. I'm not a suicide risk. Well, everyone is in this situation, I suppose, but I will never leave Isabeau and Akita, so that's not something anyone needs to worry about.

4. There is a part of me that wants to use this time to help others understand what may or may not be helpful to someone they love who is struggling. I know that a couple of you have lost friends to suicide this last year and it breaks my heart to know that our society is still so unhelpful, most people won't ask for help (because it doesn't feel like there's any way ANYONE CAN help) and it's extremely difficult to be honest, not only to ourselves and each other, but to our medical caregivers as well.

Does Anyone Blog Anymore?

I was thinking last night, during the interminable wait to fall asleep, about the bloggers I knew and met when I first started this journey in 2005 - hard coding in html so I could speak to myself. Are any of us still blogging? I know I stopped because everything I wrote read badly to me and I wondered if the army had destroyed an ability I'd had for all of my life. Over the last five years I've written nothing of any value, maybe parts of the last trip to Aus, but even those petered out before the trip was even over. I don't even write on paper, to myself, and I began doing that on a regular basis close to 30 years ago.

I find myself pathetically happy that I printed out many of (which of course are in storage at the moment) PornyBoy Curtis' posts. That boy was brilliant. I miss him. It's a bit crazy to miss someone so deeply whom you've never even met but those of you who read him agree with me, I'm sure.

I also find myself unreasonably angry at Katerina (Kaetlan Cares Not) who took her blog down before she passed away. I find that I NEED her words, for that's all I have left, and it's crushing that I don't have them anymore and never will again.

Fishboy, Pob, Eroica, Vanessa. I know we're still HERE, scattered across the globe and I've had the pleasure of continued friendship with most of you. But, are we writing?

I very briefly met a writer/photographer, Dave, who has been living on the Island for a few months and spent time, for the first time in a long time, actually reading someone's blog. Of course, I didn't know the site until yesterday and he's headed back to Wyoming today. "Too comfortable, too warm, the people are too nice - I need turmoil and chaos to write." (I paraphrase slightly there, but you get the drift.)

I understand exactly what he means and that made me think a little about whether, for me, TOO much turmoil destroyed my writing. It's hard to write when all you have is pain and depression. And cats. It gets tired. My niece (who stalks me) has called me the "cat lady of Facebook."

Did Facebook give us 'just enough' of a voice to silence our real ones? Is that what's happened?

I'm not angry about the pain, not really, not anymore. But, Christ, I resent the shit out of it. I resent the lost opportunities to meet new and interesting people, like Dave. I resent that during the rare times I've been able to socialize, I don't hear much over the pain. If I looked like I was enjoying myself, I wasn't.

"Fake it till you make it" is kind of ... bullshit. I've been faking my way through social interaction for 7 years and it's only gotten worse, because that's what chronic pain does. It destroys so much of the self and it's effects accumulate, rather than dissipate.

Sometime during the last 24 hours, I suddenly wanted to write again.

I spent some time wondering if it's because I'm lowering the dosage on a drug I never should have been on. Five years ago, my GP decided to switch my antidepressants (which were working quite well, TYVM) to Cymbalta because he'd decided that I had fibromyalgia. Absent any clinical evidence. However, he thought it would help with the pain. I get that. However, it didn't and the problem with Cymbalta is that the discontinuation syndrome is so fucking horrifying, no one EVER wants to take you off of it.

So, here I am, three weeks into a dosage drop of 50% and suddenly, my voice is muttering away in the back of my mind. Not in a bad brain cootie way - but in the way it always had all my life.

The next few weeks are going to be tough, I'm including an email below I wrote yesterday to a few friends that may explain a bit better - but I think, I feel, at least for today, that I may come back here and chat with myself. And maybe with you.

After all, sleep deprivation or not, when you spend 12 hours a day asleep and suddenly someone 'takes away' your drugs, yet you have no more ability or mobility to amuse yourself, one must find something to fill the extra time. 

You're getting a group email because I'm not super up to chatting, texting, facebooking or emailing and I wanted to let you know I won't be down to visit this month, as well as what is happening these days.

Although Veteran's has been great, I am still on the rehab plan so these next 6-12 months are a final push to determine if things that haven't been tried yet will help me before they make a decision on what will be my permanent status. Currently, my official disability percentage is 55%.

I think you all know I've been withdrawing from the Cymbalta and have just survived the first three weeks of a dosage drop. Cymbalta is one of the worst anti-depressants for discontinuation syndrome and I've been relatively lucky in that my symptoms have only been moderate. However, I ate only peanut butter and tuna on crackers for the first 17 days or so, and vomited a lot.

The biggest issue I'm having is a loss of ability to connect to my feelings. In really honest terms, that means that although, intellectually, I know how much I care about and for you all, it's JUST intellectual at this point and only slightly better in regards to the cats. It's even worse than that when I consider how I feel about the rest of the world in general. As you know, social relationships and the need for community are a driving force in all our lives and have been important to me, although I have been fighting, moving forward and looking ahead for the last few years, right now I have totally lost access and find it extremely hard to care whether I move forward or not. That does not mean that I've lost the ability to maintain and that needs to be a focus right now.

I had a long talk with the doctor this morning and we are hoping that this is a part of the discontinuation syndrome and are going another two weeks at the current dosage. His philosophy on depression is that I shouldn't need to be medicated for life and after 12 years, regardless of the added issues of the last 7 years, we should be giving it a go to see how it pans out. This may sound slightly dangerous (and frankly, freaks the shit out of me) and although I'm not sure I agree with him, I've made huge progress in the last two years with lots of pre and post-army issues so I'm willing (and, thanks to VAC, able to take the time) to give it a shot.

Do not worry! I have my team here keeping me on track, I see at least two of them every week, and monitoring me and although there are risks around suicidal things, I think you can be pretty confident that I'm not leaving the cats - the last time things were bad for me, please remember that I called 911 rather than do anything to harm myself.

Dr. H is a good doctor and he's been fantastic. He also believes that I'm suffering from sleep deprivation issues, which sadly and counter productively in a lot of cases can be exacerbated by sleeping pills, so we are going to try and cut down on those over the next few weeks as well.

The first three months I was here were really bad exhaustion-wise so we've made some gains around the possibility of sleep apnea that's been made worse by the change in climate and surroundings.

I've got the most awe-inspiring RMT and for the first time in seven years, have been actually making small gains with treatment. I'm currently also meeting with a physio who, so far, has been incredible as well. I'll be starting a course with the pain clinic at Nanaimo Regional in the next couple weeks - seminars and such, as well as some one-on-one in a pool, although it will be six months or more before I meet with the doctors. I'm still seeing Dr. Brian (Veteran's has actually now approved my Skype sessions with him, how progressive!) but I am meeting with a mental health nurse here in Parksville in early February so that she can make recommendations to Dr. H on who may be a good fit for me to transition to over here.

So, lots of reading and very basic life maintenance at this point, I leave the yurt only to go to appointments, fill my basic needs and have a coffee or shop with MaJen once or twice a week.

Chronic pain and depression is a terrible thing and an extremely difficult thing to live with and although I try hard to keep the worst of it private - I believe, at this point, we have to do some hard things to determine whether the drugs are hurting me or helping me and, as well, how much my psychological state impacts the pain and whether or not there is anything we can do about it. I know you're all aware of my anger, even if you haven't experienced it directly, since I got hurt but, although there is a bit of relief that I can't access that right now either, it still needs to be figured out.

I have had a couple of very close friends in the past who, once they went off their meds (for whatever reason), destroyed friendships and caused irreparable hurt to those around them without meaning to or even understanding that they were doing it and I'm trying to be mindful of that by curtailing my exposure during this time of transition.

It's important that I go through this phase and push things but unfortunately, it's probably going to be one of those things I do alone.

So, 2014, so far so good. I'll check in once in a while, otherwise, I'll see you on the other side of the drugs. :)