Secret Fears

I’ve been talking about secrets today. Over on my art blog, I was talking about secret dreams, but here, I’ll be talking about secret fears.

And my gigantic, mammoth-sized secret fear.

I’m afraid that I’m crazy.

When I was first diagnosed with CFS at 12, my pediatrician decided that I should also see a psychiatrist, just in case. I didn’t understand what he meant by “just in case”, but I went anyways.

I wish I’d never gone.

The psychiatrist decided that I didn’t actually have Chronic Fatigue Syndrome. She decided that I had Generalized Anxiety Disorder. I wasn’t really sick, I was just creating psychosomatic symptoms.

Apparently the definition of GAD is:

Generalized Anxiety Disorder, GAD, is an anxiety disorder characterized by chronic anxiety, exaggerated worry and tension, even when there is little or nothing to provoke it. People with generalized anxiety disorder can’t seem to shake their concerns. Their worries are accompanied by physical symptoms, especially fatigue, headaches, muscle tension, muscle aches, difficulty swallowing, trembling, twitching, irritability, sweating, and hot flashes. (Courtesy of the NIMH)

I couldn’t understand. I knew that I was a worrier, but I would never have called myself anxious. I used to compete in dance competitions, and I was usually the only one who wasn’t nervous. I was informed that I was probably having panic attacks, like my mother had. When I said that I’d never noticed myself having a panic attack like that, she said that I just didn’t notice that I was having them. I couldn’t understand how you could be having something as horrible as a panic attack and not notice. And if I wasn’t noticing, then was it really a problem?

She subscribed a plethora of anti-depressants and anti-anxiety pills. I refused to take them, but the seed of doubt had been planted – what if I was just crazy?

Years went by. I went about my life, trying to balance being sick, and going to school and having friends. The thought still worried at the edges of my mind, and I began to blame myself for being sick.

It didn’t help that when I was first diagnosed, everyone accused me of being a perfectionist, and that was why I was sick. What I didn’t understand was the statistically, perfectionists and A-types are more likely to be diagnosed with CFS.

(Note: This is actually no longer true – doctors suspect that there are more A-type personalities diagnosed with CFS, because they actually go to their doctors when they feel sick for long periods of time.  B-type personalities are less likely to be able to be bothered to go see their doctor, and hence, less offical diagnoses.)

I didn’t know any of this though. So when doctors kept asking me, “Are you a perfectionist?” like it really mattered, I began to get scared. I felt like it was my fault that I was sick, and that if I just wasn’t a perfectionist, everything would have been fine. I denied vehemently that I was perfectionist, saying that I just liked to do my best, and that I was a high achiever. Apparently this was bad as well – those high achievers got this CFS stuff too.

I am actually a perfectionist. I don’t like making mistakes. But it’s taken me years to admit that to myself, because the fear that I’d caused my CFS was so strong.

I managed alright for several years, but at 18, I became seriously depressed. I was really sick, had dropped out of school, and was in a horrible, emotionally abusive relationship.I just felt like all of my doors were closing. I didn’t know what to do anymore, and one night, I came close to attempting suicide.

At that point, I realized that I needed help coping, and started seeing a therapist, and working through my issues, and about 6 months later, was feeling much better. But once my doctor found out that I’d been depressed, despite my having been to therapy, he decided that I needed to see a psychiatrist again. So off I went.

What is it with psychiatrists and being the coldest, hardest people you’ve ever met?

This woman was horrible. She never smiled, she never made me feel comfortable. She made me feel pathetic, and un-human. I felt like a scientific test subject that had broken.

At the end of our chat, she did not seem convinced that CFS was a real disease. She asked me if I knew why my doctor had sent me to her. I replied that it was because I had been depressed and he wanted to check that I was okay. Then she told me that she was a specialist in conversion syndrome.

I had no idea what she was talking about, so she attempted to explain.

“Its like when the crazy person thinks he has little green aliens living in his attic,” she told me. “You really believe that you’re sick, but you’re not. It’s all just in your head. You made it up, but didn’t even realize it, because it’s like being crazy.”

I was fuming. It took every ounce of strength I had to not slap her. In her eyes, everyone with CFS was a victim of conversion syndrome. We all just needed to attend some sessions with her, get pumped full of psychiatric drugs, and we’d all be fine.

I refused her offer of treatment. “But wouldn’t it be wonderful to be completely better?” she asked me in a syrupy, condescending voice.

I couldn’t respond I was so angry.

Conversion syndrome is defined as “a mental disorder whose central feature is the appearance of symptoms affecting the patient’s senses or voluntary movements that suggest a neurological or general medical disease or condition.” (Healthline) Its symptoms include pseudoparalysis, pseudosensory syndromes, pseudoseizures, pseudocoma, pseudoblindness and hysterical aphonia (where you lose the ability to make sounds). (Mind Disorders)

Ironically, I don’t have any of those symptoms. But apparently I have conversion syndrome anyways.

So for the longest time, I’ve been afraid that I’m crazy. I hid the fact that I was a worrier, and I tried to cover up that I was a perfectionist, because I was so afraid that if people found out, they would pump me full of anti-depressants until I was in a drug induced haze, and lock me up in a room with bouncy walls. I feel like I’ve been undercover for years, trying to hide from the medical profession, just in case they found out and fingered me as a fraud.

“She’s not really sane! She’s just pretending! Somebody get her!”

It’s not until now, writing this post, and reading the actual definitions of these disorders, that I’m realizing how crazy these people were to define me as crazy. They wanted to see me as someone with a psychiatric disorder, and because CFS doesn’t have (as of yet) biological markers that patients can be tested for, its a process of trial and error to make a diagnosis. These mental professionals were bound and determined to fit me into a psychological disorder, and be damned with the actual symptoms themselves.

I feel like such a weight has been lifted from my shoulders. I’m not crazy. I’m not making this up. It’s not my fault that I’m sick. It just happened, for whatever reason. And now, I can let go of the blame and the judgement. Everything will be okay.

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Seeing myself as human again

So I found something out last night that was kind of crushing.

Apparently, my boyfriend’s grandma asked him if he was really sure about dating me because “I was a bit sickly.” And that he’d have to take care of me sometimes, maybe spoon feed me soup.

I was furious.

Unfortunately, punching old people isn’t considered very nice. Especially old people with MS who can’t walk very well. (Yeah, that’s right.  And she accused me of being a bit sickly.)

At first, I was hurt. I thought she liked me and supported our relationship. (Despite our plans to  move in together and “live in sin”.) But then I got angry.

I never asked my boyfriend to take care of me. I never asked him to spoon feed me. I do have my dignity. I’ve also never asked him to support me – I’m capable of making my own money thankyouverymuch.

I pride myself on trying to be as independent as possible and never using the CFS as an excuse.

So what annoys me is the way that other people have pidgeon-holed me as a “problem”. And if I’m honest with myself, I used to do the same thing. I saw myself as a problem. I thought that no one would ever want to be with me because I’m sick. I believed that anyone who maybe, by some freak chance, wanted to date me, the second they found out I was sick, would run in the other direction. I was absolutely convinced  this was true.

And then I started dating my boyfriend of two years, and learned that loving someone meant so much more than that. And for that I am forever grateful.

Normally, if I’d heard a comment like that, I would have crumbled. I would have been a mess, and wanted to  hide and run away, certain that it was true.

In the past, I could never see the CFS and myself as being two separate identities. We were one and the same. No telling us apart. I was the disease. I was the problem. You should see drawings that I did of myself at the time – they were horrible, frightening images of big blobs of mucky colour, labelled “Sarah”. There was no separation, and my self esteem corresponded with that.

But this time, something was different. Instead of crumbling, I got pissed off. I stood up for myself. And heard myself saying the words,

“I am so much more than that.”

I don’t know when that changed. I don’t know when the point of separation occurred. But damn, it felt good to say that and realize that I meant it. I don’t know when my self esteem got so high that I realized I was more than “just a disease”, but its enough to get me kind of choked up. It’s a place that I never thought I’d see. And yet here I am, seeing myself as a human being with rights and dignity.

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Relapse.

Yesterday, I had a bad day.

Actually, this whole frigging week has been a bad week. It was hard to tell if it was the weather, or if I was getting sick. It felt like a cold, but often times, it can be hard to tell. I think it was probably a lethal combination of weather, a cold, and feeling run down.

I was exhausted and frustrated.

Even after 8 years, getting sideswiped with a sudden relapse, whatever the cause may be, is still depressing. I mean, really, let’s be honest, there’s nothing to cheer about when you get sick. No one has ever thrown a party because they’re sick. (Or at least not in my knowledge – if you know someone who has, kick them for me.)

I designed this website to help people. I went through such hell trying to figure out how to cope with being sick, and I never wanted anyone to feel the same way. But I think that in my efforts to help, sometimes I’m a bit overbearing.

I’d like to involve a bit more of my own past in this blog. I mean, this whole thing is really an experiment, and eventually I’d like to move it to its own self hosted site, and to start offering CFS coaching services, to help others dealing with this and give them more personalized advice.

But its almost too harsh right now, too impersonal.

So today, I’m going to talk a little bit more about me.

I’m an artist. I work in acrylic, and paint mostly English landscapes and people. I love to paint people. I’ve been sick for 8 years, and boy, has it ever been a learning curve. I’ve been through everything. About 2 and a half years ago, I nearly killed myself. I didn’t know how to cope anymore, and I felt like I’d lost everything. I felt like God was poking me with a big pointy stick, and I was tired of it.

Somehow I didn’t do it. I think I wanted to protect my family – I couldn’t hurt them. Either way, I made a choice that day to never let the icky stuff win again. I wanted a better life than the one that everyone else had picked out for me. I was just supposed to live at home with my parents forever, a dependent. Help with the household chores when I could, but mostly just sit there.

I did not want that life.

I wanted something bigger and better than that. I wanted a life that I was passionate about.

And I see so often other people with CFS wanting the same thing, and not knowing where to turn. And I found so many of the coping resources out there to be inadequate. They just didn’t address all of the issues that being chronically ill can bring up. I wanted to create a resource where people could turn to for help. And the CFS Ninja is the result of that.

I wanted to create something that was fun and hopeful and empowering. That made people with CFS or ME or FMS feel like there was something better out there. But unfortunately, I forgot to add in my own personality. I’m a complete goofball, and you don’t often see that in my posts.

I was so involved combating all the crappy advice out there and saying things straight up, that the fact that I’m a generous, compassionate, gentle dork kind of got lost.  So I’d like to reintroduce that aspect of me.

So I’d like to say that, if you’re out there, looking for help on how to cope with your Chronic Fatigue Syndrome, and you feel like you don’t know where to turn and none of the advice is very helpful, I’m sending you a hug. Everything is going to be alright, I promise. We’ll get through this together. There is hope. There is help.

Even if today you feel like crap and you don’t even know when you’re going to feel better, and you’re scared and you’re worried and it just seems so overwhelming, there is still hope for you. Some way, somehow, you’ll get through this, because hell, you’ve gotten this far right? You’ve been so brave so far. You’ve had so much courage.

I believe in you.

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World Saving Has Been Postponed

Editor’s Note: I originally wrote this post for my other blog, but since I’m having another day like it, I thought I’d re-post it here.

I often seem like I have my shit together. Some days I do. Some days I don’t. I know more than I used to. I still don’t know everything.

Today, my entire body hurts. My brain feels like mush. I am staring at this computer screen like a zombie. I feel mind numbingly useless.

I know this feeling will pass. I know that it will get better and that tomorrow, I’ll feel better, I’ll cope, I’ll be bright and cheery and optimistic. Right now, I feel overwhelmed.

Right now, I want to hide under my covers and sulk for the rest of the day. Tomorrow I will save the world.

So for anyone out there who is chronically ill and despite all your great intentions, woke up this morning feeling like God ran you over in the night, you are not alone. I’m not going to give you some cliched piece of advice that’ll make it all better. There is nothing anyone can say. This really is the shits.

So go find some leftover Halloween candy, hide under your sheets and sulk away the day with me. Maybe find a good book. Give yourself permission to give up, at least for today. We shall see what tomorrow brings.

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Building a New Comfort Zone

It happened out of nowhere. You woke up one day and you felt like crap. You thought you were just sick, but that feeling never went away. Day in and day out, you just kept on feeling sick. You finally got your diagnosis – CFS, ME, FMS, CFIDS. And your whole life shattered, right before your eyes.

You may not have noticed at first. You may have tried to go back to normal. But soon you notice that the old normal doesn’t exist, and that your life has irreversibly changed.

And then one day, you notice that you’re scared a lot. Not over anything in particular. You’re just anxious. Afraid. Nervous.

You don’t get it. You were never like this before. You were never so afraid of life before. But now you find that you’re terrified of everything.

You’re scared of when you’ll relapse. You’re scared that you’ll get worse. You’re scared of leaving the house in case you start to feel really ill while you’re out and collapse, or something equally embarrassing/horrible. You’re just scared of what life will throw at you next.

This is totally normal.

Your life exploded. Shattered.

Ka-bloooeeeey. Bye-bye old life.

I don’t know who you’ve been talking to, but that’s scary. You got thrown straight into the unknown. Sometimes it feels like God has a big pointy stick, and he’s poking you. Its a new game, with new rules. When you don’t know the rules yet, it often seems safest to, well…play it safe. And that is totally normal. You’re gun shy.

We have to create a new comfort zone for ourselves. And I know that motivational experts all talk about “getting out of your comfort zone” but I’m with Havi on this one. You have a comfort zone for a reason – because its comfortable, and safe, and known. Its where you can hide.

And trust me, after you’ve suddenly become chronically ill, hiding is all you’re gonna want to do for a while.

So allow yourself to sit with that fear. Explore that fear. Find out what feels safe to you, and gosh darnit, go get it! You really, really need to feel safe right now. Find something from your old life that makes you feel better. For me, it’s art. I made art before I became sick, and I made art after I became sick. It was a constant, something that grounded me.

Find something to ground you, to comfort you. Even if its something silly like your favourite television show, or a favourite movie. Find something that you loved, that reminds you of who you are, and makes you feel safe, like everything is going to be okay.

Because it is. Everything is going to be okay. It just might take some time.

So find the things that make you feel safe. Build yourself a new comfort zone. Realize that its okay to be really scared right now. And if someone criticizes you about it, or makes you feel ashamed, ask them how they’d feel if they suddenly became chronically ill and their entire life exploded and changed. That usually shuts them up.

Slowly but surely, you can learn to expand your comfort zone. You’ll learn what makes you sick and what you can still do. You’ll learn how much is too much. You’ll learn warning signs that your body gives when you’re close to overdoing it. You’ll learn what helps and makes you feel better.

Slowly but surely, you’ll learn the rules of this new game. And as you master these rules, you’ll find that the fear abates, bit by bit. One day, you’ll wake up and you’ll find that you’re not really scared anymore. You know how to play the game so that you can win.

And winning is what it’s all about.

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Filed under Coping Techniques for CFS, So You've Just Been Diagnosed

Miracle cures.

Miracle cures annoy the crap out of me.

They’re not just annoying. To be honest, I think they’re cruel.

They prey upon the defenceless, the frustrated, those who feel powerless, those who are desperate. They promise you that if you just pay them X amount of dollars and buy this supplement and eat it 5 times a day, you will miraculously be better in a week.

So let me get this straight – intelligent, open minded doctors, who have spent years researching CFS or FMS or ME, just happened to miss this miracle cure. And you, with absolutely no medical knowledge whatsoever, or testing, or scientists, or research, managed to stumble upon a miracle cure.

Right.

Of course you did. And if we just pay you $1000 you will reveal to us your secret and we will miraculously recover, 100%.

Gotcha.

Excuse me if I’m a little bit skeptical. Because it seems to me that, for something to be a “miracle cure”, it needs to work on everybody. Not just a select group of people. And if you trawl any CFS forums, looking for people who’ve tried it, you will inevitably find those for whom it did not work. And those people usually outnumber those who claim it did work.

And just because you made up some fancy medical name and put your theory in fancy medical terms does not mean that it is actually a sound theory in any way shape or form. You can’t just pick a part of the body that you think broke, tell us how you “fixed” it and then tell people what happened and how you can do it for them too.

I’m sorry but that is a bunch of crap.

Now some people, with their miracle cures, do come from a place of honesty. They really think they’ve found it, and want to share it with the world. That’s fine, I can hardly blame you. But I do blame you for telling people that you’re an expert in something that you’re not really an expert in. It’s deceptive.

Let me tell you about my miracle cure.

I was told by my pediatrician (yeah, go figure) that his friend had CFS and was in a wheelchair, then saw this German woman a few times and was fine.

So off we went to the German’s house.

First, she  asked me a bunch of questions about how long I’d been sick and what my symptoms were.

Then she checked my aura. She decided that she would prescribe a series of tissue salts. Do I know what a tissue salt is? Not a goddamn clue. But I was 13, my mother was desperate for me to get better, and apparently I needed them. Lots of them. Fifty of them a day, in fact.

And you know what they tasted like? Oddly enough, tissue paper – they were appropriately named.

We spent $200 on that first dose of tissue salts. I had them every day for a month. Not a damn thing changed.

Then we went back for a check up. If I remember correctly, it was my own fault that I wasn’t getting better. I wasn’t doing it “right”.

Then she told me to stand in front of her. She pulled out a gold wand, and started waving it around my body. Then she started yawning a lot and encouraged my mother and I start yawning as well.

“Ve are releasing all ov zee negative energies” she said. Ahh. Right. I see. Negative energies.

I never went back to see her after that. Even at 13 and desperate to get better, I still thought she was a whack job.

I guess this post is just a warning. Don’t trust anyone who promises that they will miraculously cure you. If they promise to work with you to help alleviate your symptoms and manage your illness, then great. What you’ve found is a good doctor. But a full cure? If its not proven by medical science, or double blind studies, then I don’t even want to hear it.

To be honest, if they’re telling you they can cure with absolutely no medical proof to back it up, then I would consider it dangerous. And I would run for the hills.

I’m all for trying alternative therapies – massage, acupuncture, naturopathic remedies – to aid you in managing your health. If you find something that works for your body, then great! Keep doing it!

I only ask that you take everything you hear with a grain of salt. I just don’t want to see anyone getting ripped off, and people taking advantage of that fact that we are often quite desperate for a cure. Keep your eyes peeled, is all I’m saying.

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Filed under Why I Hate Miracle Cures

I can hear your soul crying

You woke up today, and you kind of feel like your heart is breaking. You want to curl up in bed and hide and cry for a long time.

And its not like anything specific happened. No one told you that you were a failure, and you didn’t get especially bad news.

You just woke up sad.

Day in and day out, we troop on, keep our chin up – stiff upper lip and all that. We manage ourselves, our bodies, our illness. We try not to get too stressed out, we’re careful what we eat, we don’t get too emotional or upset for fear of exacerbating our symptoms. We play it safe. We plod on.

But then some days we wake up, and we don’t want to do that anymore. We just want to cry. We miss the life we used to have, where we didn’t have to “manage” ourselves or pace our days. Where one little slip up, a little bit of overdoing it, might result in feeling incredibly crappy for a week.

And all of the literature about coping tells us that we really need to watch getting too stressed out, because that could make everything worse. Do the people who wrote this remember who they’re talking to? That its a large group of people who are chronically ill? What in the hell is more stressful than that?

Managing your symptoms every day is stressful. Waiting for the next relapse is stressful. Constantly monitoring your body and your symptoms and your energy levels every single second is stressful. We do it because we have to. We do it because we know we’re supposed to.

But it’s still stressful. And it’s still emotionally draining in and of itself.

And most of us have families who depend on us. If you’re a mother, you need to be there for your kids, and not let them see just how sick mommy is. If you’re a son, you hide your symptoms and their severity so your parents and relatives don’t worry anymore than they need to. We hide and we pretend and we play make believe that everything is okay, that everything is going to be okay, and that you’re okay.

Except you’re not. It’s an exhausting (if sometimes necessary) lie.

So some days, you rebel. Your soul rebels. It doesn’t want to play dress up anymore. It wants to show everyone just how bloody tired you actually are. It wants to stop pretending like everything is okay. Its not okay it says. It sucks. It hurts. Its tiring. It wants to hide away, under the blankets, where everything is warm and cozy and safe.

And it also just wants to cry.

Let it.

Let yourself cry. Let yourself mourn those simpler days where you didn’t have to pretend like it was all gonna be fine so everyone else would feel better.

And some might say to us that you don’t have to pretend. That its okay to let everyone know that you’re feeling really, really sick most of the time.

But really? Even we get sick of hearing that from ourselves. Its never that simple. Sometimes, our families can’t handle just how sick we are. We feel responsible towards them, because we love them. It’s a natural response. And we can’t handle the worry on their faces.

And sometimes, we can’t even handle how sick we are. We aren’t able to face the truth yet. How on earth can we be expected to share it with others if we can’t even face it ourselves?

So how do we cope? How do we continue on?

We do it by giving to ourselves. By comforting ourselves. By being kind and gentle and compassionate with ourselves when we’re alone. We let ourselves cry. We let ourselves hide. No shame, no guilt. Only kindness.

So that way, when we go back out into the world, and we may have to pretend like we’re not as exhausted as we feel and we’re not as in pain as we are, we have a small, still spot inside of us, where we’re allowed to feel exactly what we feel.

It’s a place where we are safe, because we gave that to ourselves. And by giving to ourselves first, we’re more able to give to the people around us without secretly resenting them.

And one day, we may be able to stop pretending. We might be able to give ourselves permission to show just how exhausted and in pain we are. I think that we will always pretend some of the time, but as we learn to come to terms with our new life, and show ourselves a little kindness, we may find that we’re able to show people the truth, and that maybe, they can handle it too.

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