But I think I’ve got this
I’m all over round 2 of Lemtrada treatment
But I think I’ve got this
I’m all over round 2 of Lemtrada treatment
It’s with a heavy heart that I write this blog tonight
My doctor has assessed me and has determined that I’m not medically fit to work right now
So, I’m taking a leave
I’m not sure for how long
Part of me thinks I can never return to a place that made me doubt myself so many times
Questioning my value
Questioning my worth
I don’t care what anyone says
It was personal
It still is
And I can’t pretend that doesn’t hurt
Part of me is terrified at the prospect of starting over
I’ve never had to look for a job carrying the weight of an MS diagnosis on my back
I don’t know how I feel carrying that burden into a new environment
I’m scared to go from one unsupportive employer to another
Let’s be real shall we?
Who wants to hire someone who is likely to take a lot of sick days?
Even if said person is fucking stellar…
On the days they are there
From a production point of view
It just doesn’t make sense
In their terms
I will always be a liability
And not an asset
So where do I go?
Even with certification I don’t have enough letters behind my name to start up a private practice
I’ve never really learned to do anything else
But you know talk to youth
What will I do if I can’t do that?
I’m not so egocentric as to think there won’t be others who are more skilled at engaging youth than I
And I will be replaced
As if I was never even there
Maybe just a cautionary tale for new staff
I’ll just be another adult who abandoned the kids I currently work with
All that work building trust
Gone just like me
They’ll look back on their time with me with bitterness and a reminder to never let someone get too close
And I’ll carry that guilt with me
And let me tell you kid
I fucking get it
I trusted too
I placed faith in my employer
And I’ll look back on this time with bitterness and a reminder to never let anyone see your weaknesses
After all this and I can still relate to those kids so damn much
For them, I’m sorry
I don’t know what’s next
And that is probably why my heart is beating out of my chest and my stomach is warring against itself
What will I do while I’m home?
Will I get worse with nothing to occupy my needy brain?
Will I sit around in my pjs and anxiously pick at the thoughts reverberating in my brain?
And I think to myself over and over again,
Not every story gets a happy ending
Not even when I’m writing it
And especially not when it’s my story
And it’s okay
It’s gonna be okay…
I have just received word from the MS one to one nurse that I have been medically cleared for Round 2 of Lemtrada!
I got this just as I was getting ready to go back for my monthly blood work after my failed attempt last week. And I survived it. ✊🏼
I will likely be doing treatment at the end of April. Its been a long hard year but I’m still here. I certainly never thought I was strong enough for something like this…but I did it, didn’t I?
And I can’t believe I’m saying this but I’m fucking ready so bring on round 2 motherfuckers!
A lovely new friend of mine started a podcast about life with MS. You don’t have to have MS to appreciate Marie’s story and her awesome sense of humour (or how her Scottish accent peaks through sometimes 😬). Marie was diagnosed in the 80s, long before I was but the feelings we share after diagnosis are the same. Have a listen and step into her shoes for a moment.
So as some of you may know MS has caused ongoing vision problems for me
I’ve had optic neuritis several times
Each time it has stolen a piece of my vision
Only to return it scarred and less functional
I used to be an avid reader
It makes me sad to even write that
I would devour books so quickly and effortlessly
I took that ability for granted
I never thought there might be a time when I wouldn’t be able to
I can still read
But it causes pain and irritation in my eyes
So I started listening to audiobooks
But it’s different now
For some reason the books of before
Don’t hold my attention through listening
So I listen to fluff
I listen to romance audiobooks
With happily ever after endings
The old me would have snorted and scoffed with derision at this shit
That’s what I listen to these days
A few days ago I started listening to an audiobook that had tons of positive reviews
People wrote that it was sad and beautiful and romantic and they cried
So I gave it a go
The story progressed nicely
The hero and heroine met and fell in love
The heroines sister was ill and eventually passed away
I thought to myself ‘that was pretty sad’ and was glad I’d moved past the sad part in the story
There was an incident in which the hero ended up in the hospital
And his nurse said he’d likely have to start a round of Solumedrol
I know what that is
It’s a steroid for inflammation
Don’t let this go there
I kept listening
The heroine had heard of that drug before as well since her sister had battled Huntington’s disease
The hero and heroine looked at each other and the heroine asked, with tear filled eyes if the hero was sick
The hero, with great trepidation and a heavy sigh (that only someone with a burden knows too well) states that yes he has a disease
Don’t let it be what I’m thinking
He says he has Relapse Remitting Multiple Sclerosis
For me anyway
I don’t know what the heroine said
I don’t know what the hero said
I stopped the audiobook
I fucking guffawed
I got out of bed
I turned on the lights
I got annoyed
So fucking annoyed
Why did this guy have to get MS
MY kind of MS
What kind of fuckery is this?
Who fucking gets MS in a romance book?
I felt cheated
I passed the sad part of the book
I wanted the happy ending
I needed the happy part where everyone is happy and safe and healthy and the hero and heroine get their happily ever after
I did not want to relate to the fucking hero’s sad shit
I got annoyed and irritated when I found out I had MS
When I learned that it was MS causing the blurred vision
Then after learning about MS and the possible course of the disease
I felt fucking cheated
This was not supposed to go this way
I conquered anxiety
I manage my depression EVERY damn day
This was supposed to be MY time
Even though I wasn’t reading romance books then
I’d read enough books at that time to know
That every great heroine has to overcome a battle
And I did
With great difficulty
With a lot of pain
I was ready for the happy ending
I expected it
Where was my happy ending?
I don’t mean the drivel with the love eternal and the wedding bells, 2.5 kids, house and a white picket fence
I mean the part where I get to live out the rest of my life in peaceful contentment
Feeling like a heroine
Cause I’d slayed my beasts
And then it came to me
This is why I’m so pissed off with MS
So angry so much of the time
Because I don’t know how this story ends
I don’t know that the heroine is happy in the ending
I don’t know how she’ll live out the rest of her life
It’s like living in a perpetual cliffhanger
I don’t know how MY story ends
I know how I WANT it to end
But MS came and put a big huge ‘WHAT IF’ across the page
I don’t want to worry about the what if’s
I don’t want to lose sleep over the what if’s
It’s too many blank pages
Some might say that’s the same for everyone
But that’s bullshit
We know the most people will not lose their vision
Most people won’t be wheelchair bound
(My two biggest fears)
I want to hit play on the audiobook
And accept that the hero does have MS
But I want to hear that the hero wins
I need to hear that the hero
gets his happily ever after
But what if he doesn’t?
What if I don’t?
So I’ve left it on pause
To be continued
It’s a picture of time frozen in place after which the hero and his love are together and he happens to have MS
And I’ll leave it there
An epic and everlasting ‘to be continued’
Nothing bad has happened yet
And everything is a possibility
It’s been a bit of a blur. The week leading up to the infusion, the actual infusion and now…the aftermath. Leading up was mostly filled with doubts and anxieties while the week of was so surreal. I never thought I could be the type of person to actually do what I was doing. To wake up each morning go to the clinic and come back and do it all over again the following day. Just so fucking surreal.
But it’s over for this year. Now I focus on healing, on building my immune system back up, on avoiding infection and work on strengthening myself (maybe inside and out).
Physically, I feel like I just survived an epic battle. I’m bone tired and I’m quite sure I look like death. The steroids are doing a number on my body still, heat flashes, hunger, irritability…you know an average day in the life of Angela.
I’ve felt some side effects but it’s been manageable thus far. The wise and formidable Nurse S told me to take the meds before the symptoms become too intense and like a loyal patient I’ve followed her orders.
Right now I’m mostly worried about Joey and him burning out. In the social work field we often talk about self care and the need to be your own priority and I’m pretty sure he’s not doing that. So dear reader if you know Joey and you’re reading this, invite him out for a coffee, a beer or a burger. I tried doing some of my youth work shit on him, you know with the circles of what he can control and not control but I’m pretty sure he thinks I’m just high. And I think we can all agree that might not be such a far-fetched thought. 😏
Since people have asked, I’m not able to have visitors (even the healthy ones) for another week or more. And after that, am under strict orders to limit contact with non sick people and maintain highest of hygiene standards and if I absolutely must go forth in the world, I should wear a mask. I’m not entirely sure how I feel about the mask. But I think it might be fun to scare people with and pretend that I’m protecting the general public from me and not the other way around. We’ll see about that.
For right now, I’m going to enjoy my seclusion with Netflix and chill and dogs and husband and the occasional drug cocktail.
Life goes on,