Friday, 11 March 2016

What Really Grinds my Gears

You know what bothers me? Like, really grinds my gears? When I'm walking in a huge crowd of friends and nobody thinks to slow down to my speed. Do they really think I'm being anti-social and just want to watch everyone in front of me enjoying themselves? HECK NO! I want to be the leader of the pack, enjoying myself with the rest of those beautiful people who are not cherishing their youth nearly as much as they should be. But no- I'm walking in the back, all by myself watching. And I'm usually a good distance behind where you probably don't know I'm with those rowdy hooligans- when in reality, I'm one of them!

Even when I've got my dumb cane with me, I usually get left behind in the back. I mean, it's bad enough to leave the girl who walks like grandma trailing a couple yards away but it looks really bad when grandma's got a cane, too. Not to mention a little dangerous, don't purse snatchers prefer hobbling grandmas to groups of university students?

Getting left in the back hurts so much because not only do I have to watch my friends having fun without me, but the only things I'm thinking about are how I would love to collapse right where I am and how nobody would notice if I did. I'm not  going to lie: being 19 and having chronic pain makes me feel like a freak and unlovable. And being kept at arms distance away reaffirms this feeling.

I know it's not purposefully done. To be honest, I bet they never really thought about it before or noticed. Or maybe they noticed, and just didn't think it bothered me because it's 'my normal.' And I know that I probably don't appear to be in a good mood when I begin to trail off, so if one does notice, they probably think I just need to be alone. I really don't expect my friends to understand, and I don't want them to be able to understand either. I just wish I didn't have to be alone.

Sometimes I wish someone would slow down. That's all I want. Even when I don't feel good, I just want to be included. I already feel really isolated in lots of small, stupid, and seemingly insignificant ways, but being left alone on walks home is the one that bothers me the most. I don't know. It sounds kind of dumb when I write it, but I know I can't possibly be the only person in the world that wishes their friends would take a slower pace so no one would ever have to walk alone in life.

Monday, 18 January 2016

I'm Nothing but His Toy

I've been doing a lot of writing on this blog about why the past few months were so difficult for me. But this is, by far, the most significant thing that happened to me. While I'd like to say this is something that is 'over and done with,', I can't: This is still something I'm dealing with. I'm actually nervous to share this post so publicly because I'm scared of the responses I'll receive. Please try  to understand.

Fall semester was supposed to be amazing. I was going to hang out in all my favorite places with all my favorite people. But instead, it ended with me afraid to leave my room and almost completely isolated. My perfect semester was interrupted by him.

I don't know if he likes me or is obsessed with me, but regardless, I find he likes to be in my company. Often, without my knowledge. He's walked behind me and followed me home. Sometimes, he sees me approaching my apartment building, sprints to the entrance and waits for me to enter. Once, from the window of my apartment, I saw him waiting outside the building, waiting for me at 8 pm: the time I usually came home that day. Thank God I was already safely inside. He learns my habits very quickly, and suddenly appears in places I never use to see him, watching me like a hawk. He stares at me, keeping an eye on me even in crowded situations. He copies my movements. He hangs around my friends so instead of being with them, I sit alone. He embarrasses me in front of friends, suggesting that I'm in love with him and should go on a date him. One time, he mentioned the color hair clip I wore each day of the week, despite the fact I only saw him twice during that week. He walks around the halls of my university. He has successfully isolated me from many people I once hung out with.

On one of the last days of the semester, I broke down while studying at the library. I found an empty women's bathroom on a deserted floor and locked myself in, sobbing in fear that any minute he would come and find me in the library. I had left my apartment early that morning, praying he wouldn't be up yet. I didn't even eat at all because I was afraid to go to the school cafeteria, where he had watched me eat breakfast just days earlier. This man drove me to be hysterically crying in a public bathroom. 

I've asked for help from people I thought I could count on. I didn't ask for miracles, but just to watch out for me, but got mixed responses. Mostly 'Elizabeth, you're over reacting.' Sometimes, people even laughed and said it was cute that 'he has a crush on [me].' Some people told me to stop coming around all together, because he can't bother me if I stay home. I got a lot of suggestions that it is my fault- despite the fact I've never been friendly to this man, let alone seduce him. The only solution I saw last year was to isolate myself, and even that stopped working when he began to hang out around my school more often. Even the police, who were called by my mother that day I broke, told me there's not much help they can give because he hasn't threatened me.

I don't want him to get in trouble. I just want him to stop.

I'm anxious. I'm scared. I'm embarrassed. I feel totally abandoned. I'm ashamed. I feel guilty, like it's my fault. I cannot visit my old favorite places without feeling sad and alone; I'm lost. I've lost hope. My confidence is completely shattered.

I'm nothing

I'm nothing but a toy for some man to play with. People I thought I could trust told me this. And I have no right to be upset by this, because obviously, it is my fault. It's always my fault.

Wednesday, 13 January 2016

When Classes Begin

I haven't really known what to post about. Life is a little dull at the moment. I've been home from school for a few weeks, and go back next week when classes begin. I've done very little over the break besides rest, and even then I just don't feel rested. Somehow, everything recently is an effort.
I don't feel particularly bad, yet I don't feel good either. I'd be quite satisfied to have another week to lie around and do nothing, but I realize I'm truly pushing my limits on 'rest.'

In October I developed a nasty cough that would last well into November. The end of November and most of December was very stressful, and I had a significant increase in pain and fatigue. No doubt, my body is begging for a rest. Yet, I don't seem to be giving it the rest it craves. Recently, I've experienced a lot of vertigo, headaches and other odd symptoms that make it clear that I am not 100% yet. The doctor explained those symptoms are from inner ear inflammation, probably from a viral illness. Though I don't recall having a recent onset of a viral illness, I'm willing to bet whatever caused my cough lingered for a long time.

Honestly, I just wish I had energy. I feel sick and tired, but at this point I've felt sick and tired for so long it seems normal and I just have to push on feeling this way. I'm even beginning to nap during the day- something I've never done unless I was very ill. I use to love long walks and trips to the store with my mum, but now I just want to sit in the car and wait for mum to do the shopping. Sometimes I envy babies who enjoy shopping trips from their strollers- I want to enjoy the change of scenery from the comfort of my seat.

Last semester, I isolated myself when walking became increasingly exhausting and painful. And I have my fears about going back to classes. This semester, most of my fears stem from not having the energy to get my work done. I also fear that the vertigo will not go away by the time I need it to- my major requires me to build product prototypes, and I'm afraid I will experience sudden vertigo while using construction tools such as a band saw. I nearly fell over last night brushing my teeth, and I'm picturing the same scenario but with a drill in my hand. But also, I fear feeling isolated again.

Classes are supposed to be a joy- it's there that I learn what I love and get to be with my friends. But lately, I just wonder how exhausted I will be at the end of it. Especially considering I'm still exhausted from last semester.

Monday, 21 December 2015

I'm Sorry; I'm Sick.

It's been a long time since I've last updated. I don't want to sugar coat it; the past few months were extremely difficult. Though I'm hesitant to say it was the worst period of my life, it was definitely the most exhausting in all respects- physically, mentally, and emotionally. While there were many things going on that were extremely demanding, I wasn't exhausted solely due to those stresses. Rather, it was because I was very ill. And I owe it to many people -the people in my life and to my readers- to explain why I was absent and very much not myself for a few months.

In July, the medication (Sulfasalazine) I had began in May was causing harmful side effects, so I began taking Plaquenil. I was very hopeful that this would be the treatment that would bring me to remission in a year or two. It seemed to be successful for many of my friends, so why not me? Plaquenil takes a very long time to work, so I wasn't surprised I hadn't felt any benefits by August. What I didn't expect was that I'd feel so sick.

Per usual, I had the 'normal' side effects: I wasn't really eating all that much, I was tired all the time, and my skin became very dry. But I didn't expect to experience severe depression and anxiety. I was constantly panicking over small things, and whenever something didn't end up exactly as it should've, I was reduced to tears. Sometimes I'd act out on it by snapping at people, especially the people I love the most. And when I wasn't worrying, angry, crying and feeling my heart racing, I was so empty. The depression is harder to explain. Somehow, it just made everything slow, tiring and worthless. Life didn't have a purpose other than being a cruel torture, anymore.

I knew I was a killjoy at the time, so I stopped talking with my friends and I rarely left the house. When I did leave the house, it was to go to my part time job. Though I kept myself composed there, I would come home and break down crying from the treatment I received from my supervisor. I began to get so anxious about my classes, I fantasized about dropping out and working online and from home so I wouldn't have to see anyone other than my parents.

Two or three weeks before I was due to go back to my classes, I consulted my rheumatologist. She opted to put me on a lower dose of Plaquenil. It seemed to work, and I began to calm down. Life wasn't as miserable as it was on the full dose, and I began to let the smaller things slide. But things were not perfect. It took me a long time to realize that lowering the dose would not take away the side effects; it would just reduce them.

When the dose was lowered and classes were in session, I hoped I would be able to handle myself- not let myself be a killjoy or appear neurotic in any way. It worked for the first few weeks, before one particular situation pushed me over the edge. After confiding with a few friends about how this situation made me feel, and receiving feedback from some that I was wrong to feel the way I felt, I began to close myself off from everyone again.

By late October, my rheumatologist decided enough was enough and she discontinued Plaquenil. Thankfully, she prescribed Enbrel- a medicineI did well on in the past. But just discontinuing the medicine didn't make the side effects go away over night. I dealt with them for a couple more weeks anyway. My mental health is only recently where it was originally- needing occasional reassurance everything will be okay, but still able to look at the bright side of life, knowing and feeling how loved I truly am.

During my struggle, I occasionally confided in very close friends about what I was facing. However, it was hard for me to admit something was terribly wrong. I was so afraid of being a burden, asking for extra support, patience and prayers. I wanted to pretend I was stronger than these side effects and emotions. And I am- I got through it, didn't I? But I needed help and wasn't letting myself receive it because I wasn't being honest and I felt guilty. I regret now not reaching out.

Tuesday, 3 November 2015

I've been terrible at updating lately. It's not even that I have nothing to say, because that is certainly not the case at all. I have lots of stuff I've been writing that I cannot wait to share. However, the past two months have been extremely intense unfortunately. September and October put me under extreme academic pressure (there came a point I started skipping meals to do homework), and in addition to dealing with arthritis, medicine side effects, and just attempting to have a social life, the blog suffered. I suffered too.

I'm very burnt out at the moment. Though I still truly do love my major and the work I am doing, I am at the point where it's pulling teeth to get it done. So forgive me for a while whilst I get back on track. I promise I will let you know how I am doing when I can, but for now I need to focus on me.

And if you want to know how Arthur is treating me, I'll give you a hint: he's kicking my butt.

Sunday, 26 July 2015

Second Guess

Since last updating, I've been taken off of sulfasalazine as it caused too many side effects to justify continuation. I experienced extreme fatigue, and as a result was sleeping almost twelve hours a day with no relief of exhaustion. In addition, I lost my appetite and barely ate at all.

I've been off of that for a few weeks now, and I'm feeling much better. My appetite still isn't what it was, but it should start coming back soon. So now I'm on Plaquenil, which is one my last options before considering biologics again. Despite my great reaction to biologics in the past, my rheumatologist insists that we try other treatments first. This is somewhat due to how powerful they are, but also to whether they are a good option for me at this point.

My rheumatologist, who I've been seeing since April, has taken note of the very active arthritis in my joints. However, what is confusing her is that for the most part, my joints are not eroded. If I was only recently experiencing joint pain, this wouldn't be surprising. However, with my long history of joint issues, damage should be obvious. There are also a few health issues I have that she is concerned about, which past doctors dismissed. 

At this point, she is doubting my diagnosis of psoriatic arthritis.

Ultimately, I'm going through the diagnosis process again.

This process isn't a pleasant one, but it is necessary. I had fought so hard to get my original diagnosis, and now it's being taken away from me. That's hard to wrap your head around. I've become so used to my diagnosis, and I've come to the point of acceptance. But now what? Will it be easier to come to terms with, since I've already done it once? Or will I even get a name out of it? But then again, what if it actually is correct?

Having the evidence of active arthritis is my only comfort right now. Before, every doctor said I looked fine. But now there is concrete evidence that I am not crazy and that is something no one can take away from me. I don't know what's going to come in the next few months, but I hope whatever comes is correct this time.

Monday, 8 June 2015

Young and Mighty

When I was little, I liked to pretend I was a superhero. Even now, I haven't quite given up that game. Granted, I don't tie a sheet around my neck and jump on my bed as often as I once did. Now, I pretend that I have superhuman strength. I love to zoom here and there, do a hundred things at once, and never need to stop, just like a superhero. But I've noticed that it's not just superheros who can do all that: It's young people too.

In an attempt to keep up with my peers, I pretend I'm extremely strong and can fly. They have boundless energy and are constantly in motion. And why wouldn't they? They're in their prime. And supposedly, I am as well. And in order to act it, I pretend I am that strong. And I do well until my friends go home- after that, I make a crash landing. But at least I crash in glory.

This past semester, I really pushed it. The mornings started early in lectures or the library, the afternoons involved at least a half hour walk and assignments, and evenings were spent on adventures with friends, sometimes until very late at night. My friends didn't seem to be bothered at all by their hectic routines (if you can even call it a routine), but I was wrecked. The day my exams were done and I went home, I had a twelve hour sleep and my first week home was pretty painful. But my body cried for help long before I went home.

In April, I began using a cane on particularly rough days. Sometimes it wasn't because of the pain, but because I was so tired that I needed something to lean on. I remember some days my foot cracked and popped every time I took a step. But I kept pushing and making everything seem okay. My friends did become concerned at the point I started using the cane. But I laughed it off, just saying my foot was a bit sore. Any time they tried to give me help, I fought it tooth and nail.

People don't take care of superheros; superheros take care of people. Young people aren't supposed to be taking care of other young people; they're supposed to be taking care of themselves. It's not receiving help that bothers me, rather it's needing the help that bothers me. Somehow I can talk about being sick to my friends- that I'm hurting and scared- but I cannot accept the help they want to give me. Accepting the seat on the bus makes me feel like I am giving up. Having plans changed to allow less walking makes me feel like a bother and like I ruin everything. Even though I feel so blessed and appreciate that I have caring friends, I can't help but to try to reject the help they offer. I'm supposed to be strong, so I should push past the hurt and put on a brave face.

Some may compare a brave face to a superhero's mask because it hides the battles one fights. The mask doesn't make the hero. Rather, the mask is a mark of humility. They don't want to receive praise and adoration for their great deeds, but they want to go back to an ordinary life where all is good. Though a brave face doesn't hide one's identity, it does a great job at hiding the pain you're battling. The brave face makes it look like that battle is nothing, so life doesn't have to change. And though trying to hide one's pain from others may seem humble, it is not. A brave face isn't humble; it's made out of pride.

A healthy person once wrote that when you go to the hospital, you put your pride in a little bag and leave it at the door. When you're leaving, they hand you the little bag back. When you're chronically ill, you have to leave that little bag at the door too. But not always at the hospital; sometimes it's left at home before you leave on bad days, or even at your bed stand. There are going to be days where you need help, and pride doesn't like that.

Humility is an admirable trait- it's what gives anonymous acts of kindness. Humility also admits when they are wrong and apologizes. But it is also knowing when to ask for help and when to accept it. And oddly enough, it can help you keep your pride. No one is invincible and everyone needs help, even superheros. Where would Batman be without Robin? Could the Fantastic Four be as effective if they didn't work together? There's no one who can do it all. Mighty people accept help when they need it, but it doesn't diminish the things they can do alone. Just because the Incredibles needed to help one another to save the day, doesn't mean their abilities aren't impressive on their own.

It's hard to accept the things you can't change. It's hard to accept that I'm a seemingly healthy young person who needs the last seat on the bus and help opening her drink. But if I didn't sit on the bus, I might not have the energy to do something I enjoy later. Needing help doesn't take away that I can do lots more by myself. And needing help doesn't mean I can't give help to others. As much as I'm afraid of depending on my friends, I realize that there are things they depend on me for too.