living in denial..

How many of us are living in denial? Anything that makes you feel vulnerable or threatens your sense of control, such as an illness, addiction, eating disorder, personal violence, financial problems or relationship conflicts can make you live that way. For me, I’m starting to realize that most of my life has been spent in denial. Currently, the biggest thing is my lupus.

A few weeks ago I saw my eye doctor for my annual check-up. The medication I take can impact my vision and if that happens, it can’t be reversed. I hate that I have to go every year. I hate the eye doctor. I don’t hate my eye doctor, I just hate the fact that someone is that incredibly close to me in a dark room, shining a brightly coloured light deep into my eyeballs that leaves dark spots wherever I look. Honestly, it often feels like she’s shone that light so far into my head that she will enter my brain and have the ability to see all of the deep dark secrets I’m hiding.

Anyways, she finishes all the tests and tells me there have been no changes over the last year due to the medication (phew!) BUT she then proceeds to tell me that I need a new prescription that will now include bifocals. WTAF?!?! Biofocals?? I’m not that old am I? Isn’t that what grandmother’s need? OMG, my MOTHER wears bifocals!! In my mind I am way too young for bifocals!! I’m not even 45. I must have said some of these thoughts out loud because she’s laughing at me. I wanted to cry. No seriously, I did.  Ugggh. I told her I needed to absorb the information a little bit before purchasing. I’m not ready for them yet and instead will spend the next few months moving the paper a little further from my face so that I can read the words properly before breaking down in the new year and buying new glasses.

It’s not like glasses are new to me. I’ve worn them since I was 4 for crying out loud. But bifocals?? I know there are so many worse things it could have been. It’s not like I’m losing my vision or needing surgery or anything drastic like that. But if I didn’t have lupus then I would have to take the medication, I wouldn’t have had to go to the eye doctor and I wouldn’t have been told that I needed bifocals. I was feeling sorry for myself. Why? Because in that moment I realized that lupus sucks.

I hated lupus. I hated the fact that I will have to go to the eye doctor every year probably for years. I hated the fact that that in just over a year, I’ve gone from seemingly healthy and taking the odd Advil to taking 4-5 prescriptions every single day. I find living life with this disease incessantly frustrating. It adds a dimension to a life that already feels pretty hard most days. I don’t feel well. I haven’t felt well since September. It honestly feels like all of my medications have stopped working and my doctor is on holiday….again…so I’m stuck for another two weeks without his help. I’m frustrated.

It hurts to get out of bed in the morning because my ankles and feet feel like they will break into a million pieces with every step. It’s a struggle to make my hands close into a ball and I constantly feel like I am about to drop things. I have a hard time writing sometimes because I can’t get a good grip on my pen. I get these weird rashes and hives for no reason at all. My skin itches constantly and no amount of prescription antihistamines will help. I can’t go in the sun. Things hurt. My bones, muscles and tendons. They hurt a lot. There is this deep achy feeling where nothing wants to bend or stretch. There is a constant dull ache in my rib cage. On Tuesday it hurt so much to go down stairs that I thought I might need to invest in a cane. ‘I don’t need a cane, do I??

More denial…..

I live in Northern Ontario, so it gets cold in the winter. But right now, it feels like I live in Siberia and it’s only early December. What am I going to do in January/February when it gets really cold? I’m cold ALL THE TIME. I wear layers of clothes, extra warm boots and mittens and have Hudson Bay wool blankets on my bed. I have had to put a space heater under my desk otherwise the poor guy in the office beside mine would probably have to start dressing for a tropical vacation if I was able to turn the heat as high as I wanted. My hands and feet get so cold that sometimes they turn a little blue, go numb and eventually start to tingle. If I touch anything that comes out of the freezer without wrapping my hands in my shirtsleeves or by using a towel the pain is agonizing. Forget about cold water, I can barely stand to swim in the lake with my kids anymore. I constantly need to rub my fingers throughout the day. A few weeks ago, a woman asked me if I had carpel tunnel. “No, I have lupus and my hands get really cold”, I replied.  She looked at me somewhat horrified and said “oh, I think I’d much rather have carpel tunnel”. “Me too”, I thought to myself. Last week at work I was in a meeting and I mentioned that it felt cold. My boss looked at me and replied “you’re always cold”. “It’s not my fault“, I replied.

I don’t talk too often about the fact that I have lupus. Other than my work girlfriends only a few other people know. I’m pretty sure most of my family doesn’t even know. Unfortunately, people often judge others by what they see and lupus is one of those diseases where you don’t look sick. I booked off two days this week and even though I had a very good reason, I felt horrible about it. I came to work this morning and within 2 hours had a rash on my neck that I thought everyone would see.

I wonder if it would be easier if I told people what was wrong. I don’t know. I hate being the centre of attention. It always feels immensely dangerous and horrendously uncomfortable. I want to be anywhere but where I am. The feeling of someone looking at me, expecting something….it’s terrifying. But if I could just get past that fear, maybe it would help make work easier some days. Maybe it would explain why I don’t feel like sitting for hours in meetings, or why I need the room a little warmer or why I need to dress in layers all the time.

I don’t know. It’s so hard learning how to mentally own that I have this disease. I have no idea how to feel about it. Maybe the full reality of it has not really hit me yet.

Like I said….denial!

4 thoughts on “living in denial..

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