An Open Journal Entry - Multiple Sclerosis, 9 Years To The Day

It’s been 9 years to the day. 

9 years since I woke up, had a shower and the vision in my right eye was a complete snowstorm and white out. 9 years of being blind in one eye.

From there a trip to the ER. Anxious thoughts racing through my brain, overtaking one another like the cars racing by my window speeding down the freeway. 

“Have I had a stroke?”

“Is it a brain tumour?”

“Am I going to die”....

This was the beginning of a long journey to diagnosis. What a shit show that was (If you’re curious to know more about it you can find out about it here.) The vision problems I was experiencing were the first signs of Optic Neuritis; a big tell for MS. 

9 years on there have been a number of progressions. Multiple medications in multiple forms; 7 in total. I should be stable in my diagnosis, given I take so many vitamins and supplements, gave up drinking and a host of other fun things to assist my body is trying to help my immune system that is literally attacking itself. But of 7 medications none are a cure, that medication is yet to exist. So for now we fight to slow down and halt the disease progression. So that I can get into a “remitting” stage and where there are no new lesions or future disability progressing.

Most of the medications I’ve been on bring an arms-length list of potential side effects. I’ve been allergic to medications, I’ve had to inject them into myself multiple times a week, had them cause full body cramps and convulsions; I looked like I could have been a body double for the exorcist. Another medication I was on was simple, just 1 pill a day. It caused and continues to leave me gifts in the form of skin cancers. I had to come off that medication. I am a vampire and avoid the sun at all costs as I have a genetic disposition for skin cancer, so you’ll never see me basking in the sun.  

One medication I loved, was the easiest and made me feel the least like I had MS was withdrawn from the market with zero notice given to us. Hard to believe I know but it was as simple as one day it was there, the next day it was gone. I found out via a Facebook news post, the pharmaceutical companies were nowhere to contact. Turns out, there were not enough of us on it globally, therefore it wasn’t viable to continue to production and distribution.

I took this hard. After months of monstrous side effects, to have finally found a brilliant medication was phenomenal. To have that taken away? Devastating. 

I spiralled into the darkest depression I’ve ever known. I was grieving for everything I had in my past life and it’s as though the old me “died”. It was a dark time, I was suicidal because I didn’t want to live a life where an illness and disease I never asked for and the treatment options ahead of me, where all at the mercy of big pharma. It was a rough time. 

As I go into 9 years, my MS- avversary if you will, I’m in what’s called the “crap gap”- A washout period before my next 6 monthly infusions. This period is where the medication is near non-existent in your system. The B -cells (baddies) start attacking the T (terrific) cells and it’s where all sorts of things start happening to my body; completely without an idea of what might be coming for me. I’m susceptible to any and every infection out there. Frightening at the best of times let alone during a Global Pandemic. I seldom leave my house, I mask up and over the past 2 years, my social engagements can probably be counted on 2 hands.

I’ve invested the time into my business, but it’s lonely and isolating not being able to do fun things, catch up with friends and travel – just a plane ride and a car drive kick my arse physically. The blowout is extreme, but to everyone “I look fine”, “unsocial” or simply like I  don’t want to partake in activities or conversations. 

A visit to the hospital the other night with double blood taken kicked my butt and I slept without a noise stirring me endlessly. In a 24 hour period, I was asleep for 20 hours. At least now I know what Koala bears feel like. Even coming out of that fog was a mission in itself. I had no energy, other than to drink water, eat, go to the bathroom. But showering and dressing? Forget it. That didn’t happen at all.

So again, the treatment strategy has changed. I’ve just completed 3 days of methyl prednisone via infusion and I’m feeling incredibly rough. Having steroids does what you might think it would. Turned my into the hulk with emotions being all over the place, I could barely sleep, I have what can only be explained as a brain wrapped in cotton wool, and everything hurts… a lot.

While steroids have a lot of nasty side effects, they are my best option to help me through to the 24th of April, when I can start my new disease modifying treatment. This regime I’ll be able to do at-home and consists of a starting treatment of 3 x injections from April to May, then we go to 1 injection a month thereafter. These smaller doses are meant to give me a better chance of keeping these B(astard) cells at bay, then I should have more consistency with my dosing. Again, feeling like total crap and again with that nervous voice in the back of my mind… “what if they withdraw this drug from the market”; It’s relatively new too.

I almost feel like I have PTSD again from my diagnosis. That we are kinda back where I was when I started 9 years ago. I don’t feel like I’ve really achieved much when it comes to treatment.

What adds to the challenge is my responsibilities. This time really puts pressure on me to be at the top of my A-game in my business. But I make big mistakes and small simple annoying ones. I get angry and tired during my workday. I’m in constant pain, which doesn’t make me the best boss or fun person to be around. I try to remove myself from situations when I know I might not have the patience, I begin weaving naps and late starts into my day because, after all, that’s why I founded my business, to give me that freedom and flexibility to do just that. But then I worry about billing, work and wage costs because I bring money into my business and when I can’t perform I have to pay others too.

I'm an avid Disney lover. If you know me then you know this. If I held Aladdin's Lamp in my hand my wishes at this time would not be that complex. 

I wish clients paid on time.

I wish I didn’t have to worry about my business so much (but the pandemic really threw a spanner in the works).

I wish I could be whisked away to Disneyland for a week and not have to worry about anything.

I wish that this stupid disease would just let me be me…………

My biggest wish though? I wish they could just find a cure. Or failing that, at the very least better meds for me and for everyone living with MS. Our wishes after all are for no more than the “normal”. We just want to get back to doing "normal things” like showering, cooking and cleaning. We want to not be in pain, or worrying about what everyone thinks of me and experiencing so often this immense pressure to be “OK” all the time!! The want for normalcy feels relentless. 

A Note From The Editor. 

Dear reader, 

As you finish this, as your heart sinks in pain as you empathise with Chrissy in this situation there is something additional I need you to know. I am the editor of this post, she is unaware as I write this that I write this. But what I have to say needs to be said, whether she adds it to this post or not. 

There are people that you meet in life, they leave a mark on your soul. They are remarkable, achieve beyond the realms of possibility and leave you feeling inspired and believing in yourself in a way you didn't before. So to both of you, Chrissy and the reader, as I read these words and feel the pain Chrissy is in know two things. The first Chrissy is that to me, you are one of those people I described above. 

Your courage as day after day, experiencing what you do, you push it to the side to run your business and define your legacy, is part of this. But I think most notably, I know that you push through with this remarkable tenacity to take care of us; your staff. To keep food on our tables. To keep stress out of our minds. For me, the inspiration is in that level of selflessness. 

Now to the reader, I’m sure you can imagine, It is weird to have such a personal insight into your boss. But someone has to edit this and that person, it seems, was me.

So let me tell you as you read this that when you read these words above if you feel anything other than empowerment you have read this story wrong. If you read the above and find yourself saying “oh that must be so hard” and nothing more, you need to read it again.  Ari Scott.