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I am a ruminant.  I allow my mind to focus on some thought, and I worry it to death.  Often, people liken this to a hamster, stuck in a wheel, careening crazily to nowhere.  Apt.  The more I ruminate about something, the higher my anxiety level shoots.  The higher my anxiety, the more frantically I ruminate, I think in an attempt to try to control something.  There is definitely a component to this kind of anxiety that makes one believe that if only one worries hard enough, obsesses long enough, one will have a talisman against bad things happening.  Not true, of course.  All that is guaranteed by this rumination is that one’s stress level will be off the charts, and the bad thing will either happen or not, just as it would have done without the rumination.

At any rate, my ruminations right now have a particular focus.  (Sometimes, they have no focus at all.)  First, the background.

I have begun to see an new psychiatrist, Dr. V.  He has a whole list of new meds for me to try, in the ongoing attempt to reduce my anxiety and improve my mood.  I have been working on Cymbalta since the beginning of December;  it is hard to tell whether my high anxiety and desperation were side effects, or if they were just par for the December course for me.  Perhaps everything would have been even worse without the Cymbalta.  I did wean myself off of it, but then decided that I needed to try it again before my next appointment with Dr. V.

I have to admit, I don’t really think that I will ever find the magic combination that will make me “well”.  (“Well” being a relative term, of course.)  So the rumination that I have been working on lately is this:  if this is the best I will ever get, can I accept it?

After many days of obsessive consideration, I think that I might just be able to accept my life this way, if and only if I can somehow believe that it is okay to let go.  (I was going to type, “give up”, but if I’m talking about acceptance, those words have no place.)  I would really and truly have to believe, based on (probably) input from Dr. V and the Counsellor, that it is okay to live like this for the rest of my life, that I am not giving up, that I am not being the bad person who malingers.  I am not really certain about what would cause me to have such a real and true belief;  at this point, I cannot envision that it could come from within me.

At the same time, I think that I would be driven truly insane if I had to live decades as I now do.  I am coming up on the anniversary of the day my mind broke;  on January 25th, it will be nine years;  in some ways, I cannot believe that it has been that long but in others, it seems like I’ve lived like this forever.  I hope that if I had the real and true belief, I could be satisfied and content.  But it is hard for me to imagine.  Some days I cannot see how I will live through one more day like this, never mind the rest of my life.

I’m losing focus here, so perhaps I will end it now.  The post, I mean.  (Obligatory black humour of a chronic depressive.  Forgive me.)  I am on the cancellation list for appointments with Dr. V until July, so I have no clue when I will see him again.  I am supposed to see him monthly, but it has been eight weeks since my last (and only) appointment with him.  NOT helping my anxiety!

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Pick out the most important item you have in your purse/wallet and tell me why it’s important to you.  This might sound funny, but it’s my chapstick.  I am prone to cold sores if my lips get too dry or if they are not protected from the sun.  And I get anxious if I don’t have any lip balm, chapstick, etc. with me!

What would you take from your house if you knew it would be flooded tomorrow?  Obviously, my dog.  Assuming that’s understood, I would probably take my laptop, my meds, my teddy bear, and my journal.

If you were stuck in a room for an hour with a chalk board, what would you draw on it?  I probably wouldn’t draw on it at all.  I’d probably pick a long word, maybe something like “postmodernism” or “antidisestablishmentarianism”, and see how many smaller words I could make up out of the letters.  (Cough, geek! cough cough)

Check out Fleur de Lisa’s Manic Monday site!

Something that a lot of us chronically ill people have in common is that we have limited energy. A lot of us can only do a small fraction of the thing that “normal people” do. Personally, I only have a couple of good hours each day where I can get out and meet with people, or do work for the SPCA, or even have lunch and shop with my Mom. And if I do that one day, then I’ll probably need to rest the next. And maybe even the one following.

For me, I know a lot of the reason I need so much rest (and have so little energy, a.k.a. “productive time”) is because of the side effects of my meds. I take seven different meds each and every day, and fatigue is a side effect of at least four. Another side effect that comes from individual meds, and the combination of meds that I take, is that my mind is sluggish. I often feel like I’m pushing my way through quicksand when I try to think, to process. That is pretty exhausting, too.

I sleep a lot. I mean, A LOT. I used to sleep for twelve or thirteen hours at night, be up for two, then nap for four or five, and stagger through the last few hours of the day. And when I was awake, I was so foggy, so mired in the quicksand, that my “awake” hours were not really awake, in an aware and able sense of the word.

Now, I have a new med (fairly new, I’ve been taking it since the spring) that helps to banish some of the murkiness and feeling of slogging through quicksand. It doesn’t take it away, but it allows me to have at least a couple of hours a day that I can write, or go out, or do housework, or whatever. And I don’t need to sleep so much: about ten hours at night, and I usually go two or three days without needing a nap. It might not sound like much, but it’s been a huge improvement to the quality of my life.

When I first had my breakdown, I didn’t sleep at all. I rested a lot, and I did probably fall asleep for wee catnaps, but I was desperate for sleep. Psydoc finally found a combination of meds that let me sleep (forced me to sleep) on a regular basis. My sleep today is not particularly restorative, despite how much of it I do. I think that my need for ten hours of sleep to be able to function is like the “normal” person having five or six hours of sleep a night for a protracted period. They can manage, they can get through their routines, but damn, what they’d give for a good night’s sleep. For me, a “good night’s sleep”, in terms of quality and not quantity, is hard to come by.

I’ve also found that I resent having to sleep so much. Not so much at night, but I fight and rail, tooth and claw, against having to nap. Another issue for me to work on. It’s a struggle to accept, especially when I was always on the go, constantly, before my mind finally forced me to stop.

It’s hard for many people to understand that I don’t have an unlimited well of energy to draw upon. My well is rather shallow, actually, and I have to save up the energy for a lot of days to be able to spend five or six hours at someone else’s house, or at a fundraiser, or wherever. And then the well is dry, and I have to spend a number of days letting the water rise again so I can do even the basics, like have a shower or cook a nutritious meal.

Anyway, something that I found immensely helpful, not only for my loved ones, but also for myself, was something called The Spoon Theory. Christine Miserandino of www.butyoudontlooksick.com is the one who created it. It is a way to explain to people who don’t have a chronic illness what life is like when you have one. It is a fantastic story, and I would really, REALLY encourage you to go here and read it. It will truly help you understand, and is better expressed than I could ever hope to do. So go. Now! Read it!

I’ve written mostly about depression this week. It’s hard to write about my anxiety, especially at a time when I am at a really high level of anxiety, which I am right now.

My anxiety adds a whole other dimension to everything else I’ve written this week. Anxiety is an energy waster. I’m going to write more about energy tomorrow in The Spoon Theory, but for today, I’ll just use this analogy: Think about a big pot of water on the stove. Imagine that this is your water for the day, for cooking and cleaning and bathing. You turn on the burner when you wake up, and you leave the burner on all day. Even if you never take a drop out of that pot, at the end of the day, you will end up with less water than what you started with. That’s what chronic anxiety is like. A constant simmer of worry or dread, that is always happening in the background, wearing you down. Even if you’re not conscious of being anxious, you are still wasting energy.

Which is not to say that there is any fault or blame to be attached to a person who always has a low level of anxiety simmering away. Everybody knows what it feels like to be anxious about something; imagine if you had a feeling very similar to that, but ALL THE TIME. Trust me, if people who have chronic anxiety knew how to make it go away, we would give all our fingers and toes, and maybe even an organ or two, to do it.

So there’s this constant level of anxiety going on. Then there are the specific things / tasks / people that cause a spike in anxiety. These can be anything. For me, hearing the phone ring provokes panic. If I have to make a phone call, I will often have a panic attack. You will never know that when I call you, however, because the Mask will be firmly in place when I pick up the phone. Which will make some people sceptical that I am truly phobic of the phone. But I am, and whether they accept that or not, it’s the way it is for me.

Other things that provoke anxiety for me can include having to leave the house, thinking about having to interact with people. Or even the thought of having someone look at me. If ebay sold an invisibility cloak, I’d buy several. Sometimes it’s a clutching fear that something bad will happen to my dog, that I’ve poisoned him with the bug spray I used the other day to ward off the spider invasion, that I’ll never be well again, that I won’t have enough money to get groceries at the end of the month, that my parents will die and I’ll end up homeless and alone. Some of these fears are not rational (some are, though); knowing that they are not rational does not make them go away.

Again, in some people’s reaction to chronic anxiety, there can run a thread of “well, just get over it already!” or “that’s a silly thing to worry about, so why don’t you stop?” As I wrote above, if I could do that, I would.

I’m not going to write much more about chronic anxiety. Just imagine, if you would, how all this background static of anxiety adds to the effects of chronic depression and the side effects of the meds and the mind games we all play with ourselves about expectations and what we should be doing and accomplishing and being. And then, suddenly and often out of the blue, there is a big explosion of fear and anxiety that is right in the forefront of everything. And imagine that this happens many times a day, sometimes. It sounds debilitating, no?

I had originally planned to write about Stigma and Skepticism yesterday, but I guess I get a little side-tracked….

My point was going to be that it’s a double whammy when you have an invisible chronic illness and that illness is psychiatric in nature. The first whammy is that it’s invisible; in our advanced Western society, we don’t believe what we don’t see. We are empiricists; we want to see it. If you’re sick, show me your symptoms.

Well, invisible chronic illnesses, by definition, can’t be seen. You can’t see anxiety or depression (or fibromyalgia, or Chronic Fatigue Syndrome, or Crohn’s disease, or rheumatoid arthritis, or any of dozens of other illness I could name) by looking at someone. The illnesses do often have physical manifestations (e.g. someone with rheumatoid arthritis might have swollen or differently-shaped knuckles), but most of those physical manifestations of invisible chronic illness are not considered evidence of the illness that caused them.

The second whammy is “psychiatric in nature”.

There are still people, even in this day and age, who think that depression and anxiety (and for all I know, schizophrenia and bipolar disorder) are “all in your head”. I cannot tell you how many times I’ve heard “feel the fear and do it anyway!” or “can’t you just decide to be happy?” There is a pervasive belief that “getting over” depression and anxiety are a matter of willpower. Either that, or that we’re all a bunch of hypochondriacs who imagine that we’re ill. Or even worse, that we’re doing it deliberately for attention, or to take advantage of someone.

When I wear the Mask, I know I make it harder for people to understand that I am ill. I can seem confident, capable and competent, but it’s only for a short time, and I will pay a significant price for the illusion. The Mask and my illnesses don’t square well with each other.

Another unfortunate belief is that a person with depression or anxiety is somehow to blame; either for having the illness in the first place, or for failing to “get over it”.

When this perception is still not uncommon out there, is it any wonder that people who have a psychiatric illness don’t want to tell people about it? Trust me, even if you think you can tell, you really can’t tell whether a person harbours this perception.

This belief works nicely with the stigma still attached to mental illness to make the double whammy even stronger. This links back with the “blame” aspect: if I was only strong enough, or had enough determination and willpower, I could get better. Since I’m not better, I’m obviously not trying hard enough.

Well, I’m here to tell you, I am as strong as a bull. I have enough determination and willpower to choke a whole herd of your choice of animal. I have tried and tried and tried, more times than you can even imagine. And I’m still ill. If strength, determination, and willpower could make me well, I’d be the most damn well person you’d ever meet.

I guess I should define my terms here. Stigma is a mark of disgrace or shame. When something has a stigma attached to it, what it basically boils down to is this. A label is applied to that thing (or person). That label comes along with negative stereotypes (see above), and those to whom that label applies are considered to be of a lesser status. They are marked because of it, and seen as somehow “less”. Less worthy, less deserving of respect. And then, stigma is often followed by discrimination against those who have been so labelled.

The stigma and the skepticism often will keep me from revealing my illnesses. Why would I set myself up for all that? If I don’t know you well enough to know what your reaction will be, I probably won’t bring it up in casual conversation.

When I was first recovering, I thought, “To hell with the stigma! I’m going to be a one-woman anti-stigma crusade!” I thought I would tell everyone, and single-handedly change the world. As time went by, I discovered that this attitude set me up for unnecessary arguments about the nature of mental illness and the quality of my character. So now I’m more selective in whom I tell. Not everybody needs to know.

People with mental illness are no different from people with other diseases, like diabetes. When we’re recovering, we’re no different from people who are recovering from heart attacks. Doctors say this all day long. But people… people just don’t buy it… or get it, or something.

One thing that my favourite psychiatrist told me (I affectionately called him Psydoc) was that it took me twenty or more years to get to the point of breakdown; why did I expect that in a few weeks, or even a few years, I could recover? He often told me that we don’t expect someone who has a heart attack to get up and run marathons, so why would we expect someone recovering from severe depression to be well overnight?

Psydoc was also fond of reminding me that not so long ago, people with depression as severe as I have were not out in the community, getting well. They were in sanatoriums, or institutions. But he was right; even a couple of generations ago, someone with a severe case of depression would live in a psychiatric facility, undergoing treatment every single day, under care 24/7. And I was out in the community, having therapy at most once a week, doing try-it-and-see-if-it-works with meds. In a facility, meds can be given intravenously, and it is MUCH faster to do it that way. It takes a certain level of many meds in your bloodstream before they become effective, and it takes time to reach those dosages when someone is taking meds orally. And with inpatient care, they are constantly monitoring the patient, able to adjust meds as needed, and to try many more types of medication in a much shorter period of time.

Psydoc was a wise, wonderful man. I miss him. Psydoc, if you’re reading this, please move back from the Yukon!

This is my first official post for National Invisible Chronic Illness Awareness Week (NICIAW). Today, I wanted to write about my reality: invisible chronic illnesses that are psychiatric.

First, some background. I have chronic depression and anxiety. Scientists have discovered that once a person has had one cycle of clinical depression, that person is more likely to have another cycle. The more cycles one has, the more likely it is that one will have more.

I cannot tell you how many cycles I’ve been through. I do know that since my breakdown in 2000, I have relapsed every year at least once. Some relapses are mild, but others are quite severe. None have been as severe as my breakdown in January of 2000 (thank the universe or whatever’s out there!), and I’ve heard many times in treatment that once we start treatment, we can never be in the same place again because we know more than we did at that time.

I’ve done many different kinds of therapy, the most helpful of which have been Cognitive Behavioural Therapy (CBT) and regular old talk therapy. I’ve done group therapy, which was important at the time, but I’d prefer not to have to go through it again. I’ve had psychiatrists and therapists, psychiatric nurses and occupational therapists. The important thing is to find the thing that works for you, with the “therapeutic person” that you have a connection with. As far as I know in Canada, psychiatrists mostly just prescribe medications, and don’t do a letyot of therapy. That means that a patient has to have some other variety of therapeutic person in order to do therapy. I firmly believe in the importance of therapy in the treatment of mental illness.

However, I also believe in the importance of medication. Depression can be caused by life circumstances; usually, this is the kind of depression that goes away with time, as those circumstances change. But depression is also caused by brain chemistry, and often medication is vital to changing that brain chemistry. I take more pills than I’ll list here, but I do know that I will always take an anti-depressant, for the rest of my life. My brain just doesn’t work as well without it.

And as far as anxiety goes, I believe the same thing: therapy is critical, and medication can be a lifesaver.

You can’t tell by looking at me that I have chronic depression and anxiety. Part of that is because I’ve probably had clinical depression since high school, if not earlier, and I developed a Mask. My Mask is one of competence, confidence, and capability. I have had literally YEARS of practice at appearing to be well (or at least okay and functioning) when I was in fact far from it. One of the phrases I particularly like is “hiding in plain sight”, which I read in someone’s blog. (Forgive me, lady blogger, I thought I’d bookmarked the post where you said that, but I apparently didn’t, and I can’t find it again. If you’re reading this, please let me know!)

One of the negative outcomes of having this kind of Mask is that it’s like a default position for me. I can assume my Mask in all but the most severe and dire relapses. This is hard for people to square with the idea that I am disabled and debilitated by my illnesses.

The Mask won’t stay on forever, though. It is a limited time coping mechanism. (And not a very good one, at that. I do not recommend it.) I can keep it up for a while, but after a couple of hours of smiling and nodding and seeming to be very capable, I will go home, collapse, and quite often cry for hours. And then I will be out of it for days.

When my anxiety is really high, the Mask slips somewhat. As I am writing this, I just received an email from an SPCA colleague of mine. We have our annual Walk for the Animals on Saturday the 13th, and I am in charge of the registration process and all of the money. This is Year Three of the challenge, and I haven’t been very happy with the way it’s worked either of the past two years. So my anxiety level is really high, and it obviously came through in the email I sent to her asking if she’d gather some materials for the booth at which she is working that day. Her response began, “Linds, relax a little.” I know I’m bad when my Mask doesn’t even work over email.

I’ll talk a bit more about the Mask in my next NICIAW post, which will be called Stigma and Scepticism.

I’m absolutely thrilled to announce that I might just have found the perfect purse for me! Roomie talks about the purse that epitomizes who she’d like to be; I’m not sure I’m prepared to go that far, but I have never been sooooooo excited about a purse!

Here is the old, ratty summer purse:

Please excuse the dog hair on the couch.  Also the malformation of the cushion due to Dannan’s delusion that he is as small as the Miniature Pinschers we live with, and can therefore perch on the back of the sofa.

I’ve seen some other blogs about purses and what they carry (I’m too lazy to look up all the links).  So here’s my contribution:

I haven’t yet figured out how to put fancy arrows and writing onto a picture yet, so here’s what all this crap is:  2 year calendar, Dentyne Fire gum, envelope containing my refill cheques, lip balm, kleenex, cell phone, inhaler, meds, paperclip (?), quarters for the grocery carts, giant Lifesaver, pen, two notebooks, keys, business cards, wallet, deodorant (you never know…), and prescription sunglasses in case.  (You are no doubt ecstatic to have had me tell you all that.)

But here, HERE, is the Best Purse in the World:

I wasn’t sure that the fabulousness of the purple would show up on the red couch, so here it is on the seat of our recumbent exercise bike (yes, we seriously do have one):

Please ignore the junk in the background.  And get used to reading that;  clutter is my life.

The Best Purse in the World has lots of dividers inside it, which I love.  As you saw, I carry a whole lot of crap in my purse, so it’s nice to have it all segregated into sections.

I know that you can’t see all the FABULOUSNESS of the purse, and for that, I blame my photography skills.  You’ll have to trust me on this one.

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