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.