The danger with fairy tales…

Reading fairy tales as children we begin to see a picture of what love is. We see it as a rescue. From the evil stepmother or the tower.

I didn’t grow up believing in fairy tales or particularly wanting one. I wanted real. I wanted the opposite of fairy tale.
As I have moved through the cycles of mental illness, I’ve learned something about myself. I learned that those fairy tales had more of an effect on me that I would have ever thought. I did not want the ridiculous romance, corny song and dance or over the top displays of affection. But, I wanted the rescue. I wanted someone else to take me away from the pain in my life…in my head.

I unknowingly put this pressure on my relationship. And maybe it wasn’t just in my love relationships but also in my friendships. 
I wanted someone to break me out of the tower that my mental illness built without my permission. I wanted to not have to struggle and fight and scratch my way out of it. I actually really wanted some person to break me out of it all.
How fucked up is that? How could anyone possibly save me from the demons that only I can see? I started to know this about myself years ago while in psychotherapy. It was a huge revelation at the time. And yet, even now, I wistfully imagine how Joey or a friend can fight my demons for me. Totally knowing how ridiculous of a concept that is. 
I’ll unintentionally place that heavy burden on someone and when inevitably they can’t rescue me, I’m hurt and sad and the tower gets stronger and bigger and more imposing than ever. 
It’s a self-imposed and self-fulfilling prophecy. One in which my brain tells me that life is sad and lonely and people don’t really care. And I make it my reality with my unrealistic expectations. 
The danger with fairy tales isn’t that they are unrealistic and make believe. I’m not even tackling this from my feminist perspective (of which I’m sure I could go on for hours). No. The danger in fairy tales is that it doesn’t show the heroine (or hero) saving themselves. Escaping with no ones help. Fighting battles on their own. Defeating that evil stepbitch solo.  
If I wrote a fairy tale. I would show the anxiety and a big scary dragon who constantly wants to fight me and the depression would be a huge never ending dark pit that stands in the way of my escape. The fight and escape? The happily ever after? 
Well I haven’t figured that part out. 

Yet. 

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What a bad day looks like:

I wake up feeling unrested and everything hurts.

I struggle to get out of bed with little desire to do so.

I eventually make my way downstairs, to take my medication, and if I forgot; I would end up being very sick.

I swallow my pills, always remembering that I need these to simply be able to exist in this world.

I lay down on the couch and flip on the television that is blurry and a dark reminder of my shitty left over from my last flare up.

I get frustrated with the blurriness and put on music and open up my latest audiobook.

I am reminded again of my inability to ‘read’ books in the literal sense of the word. I miss books, I think to myself. I miss buying books, taking out books at the library. The smell and sound of turning the pages of a book.

I try to lose myself in my audiobook. It’s never as easy to do as losing oneself in an actual book. I focus and refocus several times. Sometimes it works. Sometimes I give up.

I look up social media. To remind myself that I am a part of this world, this universe that I still belong to. Sometimes a post or a comment makes me smile and I feel good. I feel connected. Other times, on the bad days, I feel lonelier than ever. I don’t understand anyone on those days: I feel isolated and like an outsider trying to look in. I feel sad and shut off the outside world.

I have coffee and try to eat food. It’s weird..my relationship with food. Joey and I joke that it’s a complicated relationship. Good days, mean I have appetite, hunger and interest in food, in eating. Bad days, like these ones, mean an emptiness that is so overpowering that I just know, food will not be able to fill. In fact, I know that putting food into that pit of emptiness will just ring hollow. So I forgego it. I drink a meal replacement drink. I hate that. I hate drinking my meal. It feels pathetic. But I gotta keep my sugar stable. You know, so I can take more meds.

I don’t answer the phone or reach out to other people. I know there is nothing that anyone can say that will change my mood. And I feel guilty to think that my mood might infect others. On those days, I feel guilty. I apologize to Joey. I apologize that I’m always sick or sad or fucked up. He tells me he loves me. It makes me feel more guilty.

I can’t sit and have dinner with him so I go back upstairs to my room, to the bathtub, to my bed. I listen to my audiobook until it’s time to take my nightly injection. Which I do and this actually always makes me proud. I don’t use an auto injector anymore. Nope, I inject that shit straight up. And I watch. I feel better.

I try to fall asleep, and wait for the sleeping pill to kick in. I like that feeling. It makes me hazy. Not so sad or anxious, just kinda in limbo.

I struggle to fall asleep. Thinking of how I will wake up tomorrow. Will it be a better day? Will it be another bad day? I won’t know until I awake but that doesn’t stop me from thinking. When the sleeping pills take longer to kick in, I worry about the world. The kids at work. What I’ll do when my dogs die. My parents. Their health. My family. I worry about the burden on Joey. The sadness I feel is too much. I feel like Charlie in The Perks of Being a Wallflower: “There is so much pain, and I don’t know how to not notice it. It never stops.”

These are the bad days. I don’t need a good day, just a better one.

 

In three words I can sum up everything I have learned about life: it goes on.

So with all this new treatment stuff pending, I’ve been so anxious that I can’t think straight. I can’t eat, sleep or function at times. I went to a neuro psychiatrist who specializes in treating MS patients.

Neuropsychiatry is a branch of medicine that deals with mental disorders attributable to diseases of the nervous system.

Dr. Feinstein is pretty brilliant and has worked extensively with MS patients for many years.  Read about him here: http://sunnybrook.ca/research/team/member.asp?t=10&m=56&page=172

He was able to give me an answer I have been search for a long time in regards to my ongoing nausea. He said that it may very well be associated with my anxiety. It was relieving to have an answer and a reminder that I may not have had the firm handle on anxiety that I thought I did. In addition to referring me to Cognitive Behaviour Therapy, (CBT helps individuals by looking at negative thoughts and behaviour patterns, and changing those into more helpful coping thoughts and behaviours) he also recommended changing one of my medications. I’ve been taking Paxil for a very long time and at this point it probably does little other than not make me sick if I don’t take it, but have been scared to change it because I have read the horrible withdrawal symptoms. I want to make the change but it will have to wait until this new treatment is over.

All of this got me thinking about the struggles I have had and dealt with over the years in relation to my mental health. I don’t know if I always had issues with anxiety but I know in my late teens I began to struggle with it. I saw one of my first psychiatrists later on and one of her first questions to me was ‘why a nice catholic girl’ like myself would want to work with homeless people. I never went back. Over the years I have seen a few psychiatrists, psychotherapists or social workers, all of which I sought on my own. I don’t know that any of them truly helped me. I did take part in a CBT group to deal with my panic attacks in my late twenties. My panic attacks had gotten so severe that I was fearful of going out in public. I joined the group and began to immerse myself in literature about anxiety, coping, panic attacks, causes, symptoms, you name it. I went to group and talked, cried and did all the exposures that I had to. I remember thinking that if I try hard enough this horrible feeling of anxiety will go away; I will win and never have to deal with it again. Instead, I learned that my anxiety may very well be a lifelong companion (read: affliction) but that I could learn to cope with it. I could accept it and so I did. I fucking embraced it. I owned it. I became very comfortable in my anxiety, I spoke out loud about it and I felt some of the fear and shame tumble down. But I still felt that anxiety would be the first thing I thought of in the morning and my bedtime lullaby. I was wrong. Over time and over the years, I didn’t think about it so much. Make no mistake, it was still there, but satiated. Like a hunger that has been filled.

When my anxiety morphed into depression, things were different. It didn’t feel comfortable the way my anxiety had been. Where anxiety was like a blanket I carried around with me, depression was a haunting empty feeling that didn’t protect me or keep me safe. It took me a very long time to come to terms with having depression. Everything about it just made me feel so weak, so pathetic. I have come to a place in my life where I can accept that depression…is a part of me. Like anxiety is. No, it does not define me…but it certainly fucking shapes me. It has changed me. It has made me stronger and more battle weary.

I don’t think depression ever goes away, it is insidious and lurks in the corner until it decides to rear its ugly head.  At this point in my life and in conjunction with MS….it all seems to fit together very well. MS is unpredictable and uncertain much like the feelings anxiety provokes in me…and can seem so hopeless and daunting, like how depression feels. Maybe I wasn’t meant to be sans affliction. Maybe this is my cross to bear. Maybe to the vast majority of people, it means nothing…but to that one person that is struggling. I get it. And to them I say, maybe it doesn’t get better, or easier, but you’re not alone in your struggle. I’m there too. We can carry the burden together.

‘Don’t be sorry your darkness is gone. I’ll carry it for you. Always. I’ll keep it with mine.’

An update of sorts 

A few months ago my neurologist at the MS clinic at st. mike’s told me that he thought it was time to treat my MS more aggressively. I had another relapse with optic neuritis, and he was worried that it could affect my ‘good’ eye. Up until now I’ve been injecting copaxone which is a relatively no risk type of treatment. I’d like to say that injecting helped me get over my fear of needles but the blood lab I recently went to, would heartily disagree. Anyway, the neuro gave me three different treatments to consider all of which were infusion based. He asked me to research and decide which I felt comfortable with. I went home and read up on all of them and quickly realized they all were scary as fuck. My anxiety spiked and I decided to lock it away until after the holidays. Of course my anxiety didn’t agree and it remained at the forefront, haunting me and mocking me. Just recently I decided on which one to try. It’s called lemtrada and is given over a five day period via infusion. Its purpose is to essentially reboot my aquired immune system and hopefully heal my damaged myelin (the coating around nerves). Along with it I would be infused with something to help me beat any viruses during this time period. Since reactions are common I would also be given antihistamines. It’s a full five days almost like a work week starting in the early morning and ending in the later afternoon. I would be monitored by a doctor and nurse during this time. Nausea and other reactions seem pretty common while others report feeling great. So it’s five days the first year and then three days the second year and that will hopefully give me a better shot at avoiding any relapses. After my infusion I was advised to take time off of work since I work in a heavily germ infested workplace and slowly give my immune system time to recoup. I was also advised to not stay in a bubble which would not help physically nor emotionally.

Along with all of that is monthly blood and urine tests for the following 4 years after infusion. Lemtrada carries a shit ton of risks including increased chances of cancer and other good shit like that. I can’t really read up too much on it bc I get anxious and freaked out.

I had a meltdown today. It started off with me feeling nauseous which I realized may be coming from anxiety. I made my way downstairs and when Joey asked me what was wrong….I flipped. I cried, shook, sobbed. You name it. I tried to verbalized my intense emotions but all I could think was ‘it’s not fair’. I kept thinking that this whole process is making me feel more anxious than I have in years. It’s supposed to be moving towards a treatment plan that will help me and yet I feel worse than ever. I told him repeatedly that I couldn’t do this. 

I slowly regained some semblance of composure. Okay th CBD capsule may have helped in this task. So now I’m sitting here reflecting on this. I don’t know how I feel. Actually fuck it I do. I know people want me to be a fighter and beat this shit elegantly and with grace. I know people want this not out of malice but out of hope. A hope that goodness prevails. That strength and positivity can beat anything. And that everyone is capable of doing that. 

I’m not that person. I never have been. When I was diagnosed with anxiety and depression, I embraced it like a warm blanket. It somehow just made sense. But this. MS. Multiple Sclerosis. It feels foreign and alien to me. It’s like my mind keeps rejecting it like a donated organ. 

I didn’t come up with a heartwarming realization. Dear reader, you must have realized that this wouldn’t be that kind of blog. 

It is what it is.

And still I rise.

So I need a place to vent..

To share my unfiltered thoughts, emotions and feelings. So maybe a preamble is needed: I’m not a source of inspiration or role model. I’m a person who got dealt a shitty hand of cards and is struggling with coming to terms with it. In my own way. It might be ugly or sarcastic or whiny or funny anything else an a fighter isn’t ‘supposed’ to be.

Well fuck it. Here I am, fighting against MS. Doing it my way.

Welcome to my world.