These Days

It’s been a minute, here’s a quick life update for those who might still look at this...

1. I have moved back home. No that doesn’t mean back into my parents house, for the 3rd time. But I moved back to Prince George. Moved in May 2020. It’s been great, was missing my friends and the northern community. I am loving less people, the easy accessibility to getting outside. Taking Tucker (my puppy) to the river. 

2. I still work in the ER. Still love my job, most days. It’s certainly emotionally and physically exhausting a lot of the time. But I can’t imagine doing anything else for work right now. 

3. I have a puppy, 10month old Springer Spaniel and he’s a doll. So well behaved, I feel like I can only take partial credit for... I just lucked out. 

4. I still have MS. Shocker, I know. No miracles here. I go down to Vancouver every 6 months for bloodwork and then two weeks after that I get my medications. Overall my MS has stabilized, I fluctuate every 4.5 months when my medications wear off, but I think that will be my forever normal. I function at about 80% of normal for 4.5 months and then the last 1.5 months before my meds my energy levels drop from about 40-60%. Which is hard, but it’s not 12 months so I’m thankful for that. 

Coming this September I’ll have been diagnosed with MS for 8 years. Kind of crazy to think it has been that long. Lots of life has happened between then and now. I’m definitely a very different person than I have Sept 5, 2015. Learned a lot about myself, who I am, who I want to be.   

5. Still single... shocker I know. But I’ve got Tuck, that’s all I need right? And he thinks I’m the best— granted, that’s Probably just because I feed him, most days. They say it’ll happen when it happens, I’m getting less hopeful with each passing year. 

Right now I can’t say my life is overly interesting, no huge life changing/altering things, which I am very much okay with.

I said it... I love you!

I said it, “I love you” 

It’s taken almost 4 years before I finally said I love my job.

I have had many conversations about my job and often at the end of it people either tell me or my mother that they sure can tell I love my job.

“Her face lights up when she talks about it.” 

"She must love what she does."

My response to that has always been a bit taken aback and denying any love for the job. I would confirm by saying, “I don’t know about love, but I do really enjoy it.”

Don’t get me wrong, I really really enjoy my job. But I could not bring myself to say I love it.

It seems ridiculous, I’m aware, just say it, clearly you do.

I’ve come to learn over the past few years to be very careful how I describe my emotions and things in my life. Especially when it comes to love. I’m great with the sarcasm, but getting down to real emotions isn’t my favourite and I've been okay with that. 

Here’s what I’ve learned over the past few years...

Putting great emotion into things means you care. 

It means you actually have something to lose if it gets taken away. That terrifies me. I’ve had SO MANY things “taken” from me over the past few years.  Health being the biggest and most affected. **I know everybody has losses, I know I’m not special there. But I’m learning how that’s affected me.

It’s made me put up some decent sized walls and REALLY guard my heart and mind. It’s made sure that I keep things I treasure at a distance and to be aware of attachments.

When it comes down to my job, I know my body can change at a drop of a hat and that terrifies me. I’ve said things like this before, life can change for anyone but my life already has hindrances that I know about. This makes me even more hyper aware of my potential future challenges. But it does, it terrifies me to know that one day I might not be able to do this job that I love doing. That one day my brain might stop functioning at a level that’s required of my job. Or I lose strength or heaven forbid bladder function, (that’s a real and terrifying thing), ability to walk or talk. These are real MS symptoms and maybe I will never have to deal with them, but maybe, just maybe I will. That scares me.

But this passed week, having people straight up ask me if I love my job I’ve of late had a hard time saying no. Or even just “I really like my job”.

I love the people I work with, my team of nurses and doctors. I love the cases I get to be involved in. I even love the patients, the funny, yelling at me, kind and grumpy. I’m honoured that I get to be apart of people’s lives who may just be having the worst day ever. Honoured that I get to use my life experience and my journey to maybe help them with theirs. I’m honoured that people come and let me take care of them.

So there, I’ve said it. I love my job.

I guess there’s no taking it back. :)

Today and many others...

I was asked this week, “Hey if we have another dinner at my place will you come?” 

My reply was, “Yeah, I would like to!”

“What do you mean you would like to?

“I mean, yes I would like to, but no promises.” 

I went on to further explain how lately I’ve been making plans but 3pm rolls around and I just can’t find the energy to leave the house. The call of a warm bath at 5pm and in bed by 7pm wins. It’s not often that I don’t WANT to go. I just can’t. 

It feels like I am wading through 5 feet of water, with spots that are way too deep to stand and I barely can keep my head afloat. 

It makes me feel like a shell of a person I once used to and want to be. 

I wish I could describe how much pain and frustration it causes me. It breaks me, daily. It makes unknowing co-workers ask why I don’t work full time, or why I’ve only picked up part a shift and it’s not even overtime. I never mind answering, and having the questions asked doesn’t bother me. It’s the answer, it’s that MULTIPLE SCLEROSIS runs my life. It runs every waking moment and every decision I make. I need to know how a specific decision I make is going to affect me, either the next few hours or even days from then. 

I don’t want to be frustrated and have it run my life. I don’t want it to be a constant thought and mild worry about the future. I also don’t want MS. That’s the bottom line. I know ANYONE who has a chronic/permanent disease says the same thing. But this is what I’m saying today. 

I don’t want it anymore. 

....and I don’t know what to do about that that.

SIX Years

Six years feels a little surreal. I vividly remember that day sitting in my neurologists office and him telling me what I had already been thinking for weeks. 

“Without a shadow of a doubt you have MS. Unfortunately it’s quite progressed and very aggressive.” 

The thoughts that I had came racing back, the same ones over and over. 

“Whatever/however you shouter your life was going to be is over.” 

“You will not be the person you thought you were going to be.” 

And boy was I right. Not in the ways I thought though. But in ways I hadn’t even thought about. 

There are a bunch of things in my life that at moments feel quite sad that I feel I haven’t accomplished; marriage, living independently of my parents, having this perfect, happy unbelievable life etc. 

But honestly, that’s OKAY! 

Because what I have accomplished in these six years that I NEVER thought I would be able to do, even before MS is awesome! 

Sure my life isn’t this cookie cutter picture of what I thought it would be. But I’m doing well. 

My health is....adequate— much better than what I know it could be if I didn’t get to be apart of a drug trial. Which has slowed the disease progression dramatically. 

My job...awesome— I love the challenges and opportunities my work has. Working as an ER nurse is great. Keeps my brain sharp holds me accountable to new learning all the time. And constantly challenging me. 

My family...— Living at home again as given me a different perspective on their lives and how I can learn to be a better daughter and family member. 

Overall. I’m doing well, I get out of bed most mornings feeling like I can actually be the person I dreamed of being. Some days I barely get out of bed and deeply wish this disease was never apart of my life— but that’s another story. 

Six years, lots has changed, lots is not what I imagined. But maybe that’s a good thing, maybe it’s helped open my eyes to many things I wouldn’t  have done otherwise. It challenges me, it helps me be more compassionate and empathetic with patients at work. Gives me a new perspective on little things in life; like getting up and not feeling exhausted for the first 30mins of the day. 

So, yes I would still never wish this disease on anyone. But maybe, just maybe there can be something good that’s come from all of it. All I can do is take life one day at a time. The good days and the bad. 

Here’s to SIX years. 

MS Awareness

I like my life, most days love it! But I don't wish parts of it on anyone.

A few weeks ago I took my friend out for dinner, she asked to meet at 6pm. Which also happens to be a reasonable time for dinner. However at 4:30 while I as at home I really wished she had said lets do dinner at 5:00 or even 4:30. But not as I have been told MULTIPLE times most normal people eat dinner later than 5:00pm. I went to dinner, once I got out of the house it was fine, had a lovely dinner celebrating her birthday.

After I cam home I puttered around my house until I took a shower, felt EXHAUSTED and crawled in to bed, glanced up at the clock which read 9:08pm. It took me a few seconds for the shock to dissipate for me to realize that it wasn't actually 11:30pm or even later. No, it was NINE. How could I possibly be this tired, I likely hadn't done much that day either. Why then did I feel so awful.
To add to this situation this was probably one of the 5 times I had left my house after 6pm for at least a year, likely longer, apart from going to work for night shifts.

Toady is the beginning of May, which also in Canada is Multiple Sclerosis Awareness Month. I guess when I think about it, I'm not sure what I want people to know about MS. But I do know I want people to know that it exists and I want people to understand that even though most of us look pretty healthy, its not what it appears. I don't want people to feel sorry for me, I just want people to know what its like. To not have feeling in your right hand, to have your legs tingle at random times, have your hands feel like they are on fire. I wish I could explain fatigue in a way that EVERYONE would understand, where it feels like you haven't slept for days when you wake up after 11 hours of sleep. What it does to your confidence in life, how it makes you feel about your future. How scared it makes you when you have hard days and can't bring yourself to leave the house. How sick it makes you feel when you have this dream in life to do amazing things but just cannot pull yourself together enough to accomplish them.

Over the month I do want to talk about some of these things, if some of my other plans work out, which I had been working on for MONTHS, but seem to have hit a glitch. Some of these plans will also talk about and help explain different symptoms and maybe give a little more insight to what it is like to live with this chronic disease called Multiple Sclerosis.

[ 5 Years ] How do you define yourself?

I enjoy looking back at my Facebook memories. Well at first it's kind of funny, looking at my 16/17 year old self. What I found important and what I dedicated my time into.

Sports and friends

With those two things also came how I defined myself or identified myself. 

I was an athlete and a friend. 

Not to a lot of people, but a few good friends. We had tons of fun together, from sports trips, playing down by the river, going out late for slurpees, playing dress up, playing outside. Those years I never had to care about anything, food, money, transportation, education, it was all given to me without much ask.

So much of it taken for granted I've those years, especially my health.

Today marks 5 years of being diagnosed with MS. I find myself searching for my identity.  

I feel like there are at least 2 main ways we identify ourselves.
1. Either by something we are really good at and/or
2. something we spend the most time doing.

Reading different articles online I can see, people define themselves as their job, "I am a carpenter." It's what I do, my job and my life.
Or as a parent, "I am a mother" it's what they spend 98% of their time doing.
Therefore that is how they define themselves.

I don't think those are bad ways of defining ourselves, but there is more to you than just that.

I know I can say this out loud but that doesn't mean that I think that way. I 100% define myself as someone who has MS. I view it as apart of me, it's who I am not. I'm a 25 y/o who has MS. There are many days that I believe it's the only quality that defines who I am I use it all the time when I talk about myself.
I think that if someone doesn't know I have MS they don't know who I am. Which party makes sense, cause a lot of the reasons I do things in life is because of the disease. Activities, work, memory, interactions with people. I am constantly working and living around this disease.

So, I must ask myself why shouldn't I be defined by it? 

A.  It's not super healthy. As much as I want to believe it, I am not my disease. And there is so much more to me than it.

B. It can't be an excuse all the time. Well, maybe it can be, but it probably shouldn't make me stay away from particular things. Eg. Working full time, playing sports, getting more education, hanging out with friends or family. I found that over the past few years I feel like I talk about my MS a lot. (Granted, if you get a puppy, that's what you always talk about too, right?) It's a go to, it's something that is such a huge part of my life, it impacts everything.

C. I see myself as handicapped. I know I'm not on the same playing field as most people. I know how much I struggle to keep up with other people in life, energy wise, capabilities in life, etc.


Which also leads me to think that even my acquaintances see me as handicapped. I'm terrified that new people I meet or work with are going to see me as handicapped.

Or someone who can't keep up, can't perform as good as, think as fast, as, be as capable as someone who doesn't have MS.

D. I spend a lot of time wanting to prove people wrong when they talk about my MS. Not that they mean to, but some people become concerned about what I should or shouldn't be doing, or if I've remembered everything as I'm heading out the door.

I desperately want them to be wrong. 

I am driven on occasion to prove people in my life wrong.
(Other days I am content and I will just blame it on my MS)

What am I going to do about it? 

Tune into my next blog post when I have figured it out! ;)

Expectations

Wasn't until today that I read an article and it summed up a lot of my emotions over the past few months. 

It also reminds me of another article that a friend showed me a year ago or so. 

Here are the both of them if you want to peruse...

Expectations - Observation = Frustration

Wait But Why?

Expectations can rob us of living and enjoying in the current moment. 

We are all guilty of it, from the simplest of wishing for life to change and dreaming of what you are going to do to get there, to setting realistic or even unrealistic goals in your life. Don't get me wrong I really think goals are important. But I've found over the past few years I've dreamed up this life I imagined I would have by the age of 25. And believe me. I am far far from what I thought I would have right now, or who I would be by now.

Maybe I'll break it down further. So in grade 12 I thought I was a pretty big hotshot, I really did. I honestly didn't have much to worry about, I thought I was a great athlete, got good grades in school, had an awesome group of friends, "by far the hottest boyfriend in school"  and ready to get on with life. 

15 months after graduation I got slapped in the face with reality, at the time I didn't really think life really would change or could change into something I hadn't been dreaming of for the past 5 years. 

You know... by the time I turned 25 I fully expected to be celebrating at least my 2nd or 3rd wedding anniversary, we would've honeymooned across Europe for 9 weeks just like my parents did. I would've had an amazing career, maybe thinking about kids in the next few years, owned a house or at least getting ready to, had a really great group of friends (who actually lived in the same town as me). Maybe getting ready to go overseas and work in an orphanage or an organization that gave medical care to those in need. 

Like I said before dreams and goals are good, but they aren't my reality. 

As my brother as said in a few words, 

"Duh, your 25, single and living in your parents basement!" 

Not exactly where I expected my life to be at 25. I would also add to this sob story, a chronic illness. 

This is my reality. 

I will tell you I am doing well an am grateful for what I do have. I just have come to the realization of my frustration is because of my previous expectations I had for my life what I was 15. Why my 15 year old expectations for my life have any power over me is beyond me. But it does. 

So what is to be done about it? 

Some people have said counselling, not so much about the fact I'm not an all star basketball player anymore, but likely because of how much has hanged in my life over he past 5 years. Maybe I will cross that bridge sometime in the future. (It probably is healthy to talk about feelings as opposed to covering them up in a morbid sense of humour)

The flip side of all this is just don't have expectations for yourself in life, which in a sense agrees with me. Aren't we all so good at building something up in my mind that when it happens it will never be as good as I anticipated. In the end it leaves me disappointed or upset that it "wasn't as good as I imagined". 

But I believe there is some truth in that statement. I really can't keep trying to live up the expectations my 15 year old self had, duh. Besides I've already passed all my expected deadlines anyways. 

So it leaves me in a space where I question why I have put so much weight on what or where I thought I would be at 25. I honestly haven't figured out an answer for that. 

From the articles that I posted earlier I do have a few ideas that the authors have suggested....

1. Let your OBSERVATION take precedence over your EXPECTATION.  

2. Alter your reality or alter your expectations 

3. "Tired of being frustrated? Then set aside your unmet expectations and face reality head on." 

4. Stay ambitious. Don't give up on goals, hopes and dreams. 

5. "Ignore everyone else." I spend time thinking about what other people have, what they are doing, how much better their lives are because they seem so accomplished and put together and I don't. Is the grass really greener? 

"Does it still affect your life?"

He asked me, "Do you find MS still affects your life?"

I was probably too quick to answer, however my answer was "Yes, every waking moment of my day is affected by MS."

I have to plan my life around it. From what time I'm going to bed, to what I should eat to when I should drive somewhere or go out with friends, what it's going to be like in 5 years from now, the list goes on.

I truly wish it was one of those diseases that had an end date. I would love it if someone came to me and said,
 "Kate, it will be a long 5 years, (heck even 10 years) but after that period of time with treatment your disease has a 90% of recovery."
Give me a timeline and that would give me hope for my future. An end date, so I knew that I would go through all these hard times, but only for a short period. And then it would be done, all done, finished, for good.

Then again when I sit here exhausted writing this and it's only 2pm I know there IS and end date. And I also know that that end date is THE end date ,for my life. I honestly don't write this with sadness, but truth. (And frustration)

I know that no matter how terrible or how awful I feel, how much I wish my life wasn't a constant battle with fatigue.
But then again...
I still woke up today.  I had to drag myself out of bed. But I woke up
I walked all day at work. Even when my brain was done. But I could do it well.
I looked after those who appeared to be sicker than me. And was capable of doing so. Even tho I know I'm sick also.
I drove home. Knowing that I just had 5 more mins and then I could rest at home. But I was capable of doing so.

So yes, to answer the first question. MS affects my daily life. But I do my best to fight, to live each day the best that I can. To make those around me laugh, to make them feel like I am doing my best to help them at work or in my life. There are days that I don't want to get out of bed, some mornings I don't. I try to remind myself that some days will be better than others. And some are.

However, multiple Sclerosis unfortunately affects my life.

But I also do my best to make it so YOU don't know it affects every part of my life.

I live life the best I can, no matter what.

FOUR

My MS has officially reached its fourth anniversary.

The other day I was talking to one of my cousins and they informed me that one of their friends had just passed from cancer. It was after a conversation we were having in which discussed how we felt sorry for ourselves for having an illness or being in an unfortunate condition.
It was after that point that I rechecked my thinking towards MS and remembered that as much as I hate it sometimes, I am thankful that it is "just" MS.

Unfortunately it isn't always sunshine and butterflies with many diseases. But I really can only tell you about MS. It is hard and frustrating some days. Some days it plays a huge part in my life. Other days I only notice it for some parts of the day.

In saying that I am thankful....

That I can wake up every morning in my own bed. Not the hospital.
That I can eat food without puking. Cause my treatment makes me nauseous.
That I can walk on my own. And my diseased hasn't progressed so I cannot.
That I can still work. Even though it's often only part time.
That I can look after myself. Most of the time. ;)


I am thankful that I have been healthy enough to keep living my life. And living as full as I can. Going on adventures, car trips, camping trips, cabin trips, wake surfing, playing sports, maintaining friendships.

So yesterday marked my fourth year having MS. It scares me to think that fourty years down the road it won't be this well managed. But maybe then they'll have found a cure. I don't know what the future will bring. And it does terrify me especially when I think about getting married, having kids, supporting myself and possible family  and thinking about how this disease will affect every part of that.

 I have so much to be thankful for. And all I really can do is live each day the best I can. 

"Live life full"

 Spend great moments with people you love. 

That was this "fourth" year of MS.

Great moments with people I love! 

Approx. 12,000km later...

So I've been doing lots of travelling since I last posted. Lots of things have changed in my life. I am feeling like I'm in limbo.

End of June I took a trip to the Yukon. Which has always been a dream of mine. I had a blast! My roommate and I explored, drove TONS! It is a decent trek from Fort Nelson. But the trip started out fantastic.
Driving through the Northern Rockies this is what we encountered... Driving through a rain storm into a sunset and this is what you get!

After we got to Whitehorse we camped along the Yukon River. 

It was a very neat trip. I then joined my roommate to keep him company on his drive/move to Manitoba. New experience for me again. Never driven past Edmonton, AB. Very prairie like. Flat. Canola fields. NO MOUNTAINS. Which is not a world I would like to live in. 

 

After that I flew Vancouver for an MS appointment. Eventually back to Fort Nelson, worked a set. Packed up my life into a small UHaul trailer, hooked it up to my 4Runner. And spent the next 4 days driving down to Abbotsford to move in with my parents. 

However, I did get to drive the Cassiar Highway. Which I hear is beautiful. I couldn't tell you, it rained the ENTIRE way! Socked in, couldn't see more than the bottom 200 feet of the mountains. 

Just rain and fog. 

I then got to Abbotsford, unpacked, repacked my car and went on a road trip to Vancouver Island with a great friend. We unfortunately didn't make the connection to our trip and August long weekend. Which if you didn't know, means there are ZERO campsites available. Which meant roadside camping in the back of my 4Runner. Which is great btw. 

 

The island is beautiful, but not a place I would like to live. 

So after that, I believe it has been about 12,000km in the last 2.5 months driven. It was my sisters wedding. Which was beautiful and a very nice day. 

Aren't they cute?

On a side note, I gave a fantastic speech, got lots of laughs and did have a lovely time dancing with family and friends at the end of the night. 

As for my life at the moment?

I'm kinda stuck in between worlds... looking for jobs, applied, had an interview, but waiting for them to call me back. It's a really awful feeling actually. I don't like waiting much. Especially waiting on jobs as I continue to spend more and more money. Its a terrible balance. ;)

As for health?

I've been doing alright. You would like with nothing going on in my life now I would have less stress.. but its creeping up nicely these days as I wait for a job. But until then I guess all I can continue to do is play and have as much fun as I can...

Like go exploring more...hang out with friends, go hiking. Oh yeah, and MOVE TO HOPE, BC. 

I guess I can move out of the north. But good luck getting me out of a small town...