7.07.2017

Mad Diary of an MS Relapse. Steroids Made Me Do It.

In an attempt to calm down my MS I’ve been riding a rollercoaster of steroid-induced psychosis these last few days. 

Warning:  This is some Girl, Interrupted, peek into my brain on drugs, shit. You don’t need to call any hotlines. I dipped my toes in crazy for a few days but I’m fine now. Just, read at your own risk.


Dear Diary, Shit's about to get weird. 

Day 1

Get up early, put on a cute hat, get coffee and head to the hospital. There’s a slight chance my incurable disease could see some relief, so today’s a good day. 

Steroids are hard, but this time’s gonna be different. This time, I’m gonna be the perfect patient. I’ll wear pink pyjamas to match my pink, puffy, face and it’ll be adorable. I’ll be like, guys, I’m so sorry if I freak out and try to destroy you when the drugs hit me, but really, I know everything’s gonna be fine and everyone will be like, Wow, she’s got her shit together. Look at how awesome she did. High five!

Day 2

My infusion nurse arrives at my home and asks if anyone else is around that could unhook my IV so she won’t have to come back. I tell her to ask the dog and she looks at me like I’m the unreasonable one. When she does come back she offers to take my vitals and flush my vein “if I want”. 

By midnight, my tummy hurts and my bones ache but I don’t complain because it’s worth it. 

The paltry AF sleep aid I was given barely makes my eyelids heavy, but I decide to embrace it and get shit done. Write the best blog ever, read all the things, learn to speak Russian. It’s like I’m on speed, but with no down-side. 

Day 3 

Look in the mirror and decide my pie-face makes me look younger, because I’m a glass half-full kinda girl. 

So far no benefit from the steroids and that’s making me anxious, but there’s still time. 

It’s my last infusion and my lazy nurse asks me if I’m comfortable taking out my own IV. Again, I refer her to the dog. 

Day 4 (morning)

Infusions are over and I’m not tethered to a pole anymore. I could shower, but I don’t. I mean, I feel okay, but not shower-okay

In fact, I’m a bit dizzy and I realize I’m weaker than I was pre-steroids. Not a good sign. 

Give myself a quick sponge bath and get a ride to the salon for a blow-out so I won’t have to lift my own arms to dry my own hair. I tell myself the worst is over.

Spoiler: No it’s not.

Day 4 (afternoon)

Appreciate the feeling of clean hair for 7 minutes and then crush my blow-out by going directly back to bed for 5 1/2 hours. 

Wake up and feel sad it’s still light out. 

Cancel plans for a rooftop hang with my Ginger Bestie and her BF.

Day 5 (morning)

Wake up and realize I can’t move my right leg. Panic a little.

Text The Banker, who got up hours before me and is in the next room, to come and help. He kisses me good morning (it’s lunchtime) and then patiently bends and straightens my leg until it feels limber enough for me to use it.

Step on the scale and wonder how it’s possible to have gained 6 lbs overnight when all I ate was saltines and half a banana. 

Cancel plans to attend Canada Day BBQ with more besties and my sweet godsons. 

Experience increased feelings of FOMO. 

Day 5 (afternoon) 

Make coffee. Pour it down the drain because prednisone makes everything taste like poison. 

Decide steroids have not helped and that I’m ready for my Make-A-Wish.

Feel too sad to think of any good wishes. 

Scan Spotify for a playlist that will match my mood. Find nothing in the genre of Devastating Illness Ennui. Briefly consider one called All the Feels before deciding that anyone who uses this phrase should die.

Day 6 (morning) 

Accidentally knock over a bag of garbage and decide not to pick it up. Ever.

Decide I hate everything, throw out half my stuff and then wonder what I can buy to make myself feel better.  

Cancel plans to attend a holiday BBQ in the ‘burbs. 

Make a note to stop making plans. 

FOMO's at an all-time high.

Day 6 (evening) 

The Banker is hiding in the storage locker with the dog asking Siri if Werewolf/Vampire rules apply to Solu-medrol Beast People. 

After holding back tears and trying to suppress a full-on meltdown all day, decide that confronting the loss of mobility is actually a pretty reasonable excuse for a meltdown. 

Call my parents and try to get them to meltdown too. Meltdowns for everyone! 

Day 7

Congratulate myself for not being a drug addict or an actual alcoholic because it’s really tempting to not wanna feel any of this. 

Decide extreme sadness is not sustainable and brainstorm ways to pull myself out of this hole. 

Download a meditation app. Don’t open it. 

Decide to feel grateful that my tummy hurts less than it did yesterday, that my coffee no longer tastes like arsenic, and that I still, probably, have friends and a husband, somehow. 

Allow myself to grieve what I’m losing. Know that somehow, I will come to terms with this fucking nightmare. 

Make plans for the weekend and keep going. 


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12 comments :

  1. I become a bit unhinged on steroids, especially if I'm having steroids in hospital. The combination of the two on top of whatever is going down with ms seems to push me to the brink. I recall walking down a corridor one night when a guy in a wheelchair also making his way down asked me to push him. In my steroid induced state I obliged for about 3 steps before giving him a big push and leaving him. I remember striding past him without a backward glance. Terrible I know. ms+steroids+hospital send me into some sort of survival mode and I'm really not myself. The week after steroids hits me in a different way and I normally spend a few days crying for no good reason. I have to tell myself its just the steroids and it will pass.

    Hang on in there.

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    1. Oh dear. That guy probably has a great story about how some dazed person gave him a push for a bit and then just gave up.

      Solu-medrol is real personality-bender. I always think I can stay ahead of it but it's impossible. Might as well laugh about it later.

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  2. I know it makes exactly zero things better but I also went through my own version of steroid hell in the last few weeks and I relate to every single word you've written here. Also, I didn't write a brave blog post, I wrote in my journal then read what I wrote the next day and decided I was a very scary person and nobody ever needed to know just HOW scary so blog post averted. This sucks all kinds of things. You inspired me to write it out in the first place. So you're not completely failing at life. You've done a lot of good, right, inspiring things in the midst of a shit sandwich so I think you're pretty amazing.

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    1. Thanks Beth. It's actually really comforting to know there are people who understand exactly what this is like. I am humbled and honoured that I've inspired you to write. My stuff sat in my diary for years before I felt like I had processed it enough to feel I could share it in a way that I would safe about it.

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  3. I'm always floored by your ability to to put into words so clearly this journey. You ARE to be congratulated for not being an outright addict of some sort - we all should. I was going through this recently at my chiropractor's office after he had been badgering me for not making appointments as often as he suggested. But one of the receptionists apparently told him how amazing it was that I actually keep showing up as I can , and have been for all these years. I left the office pissed thinking that he should have congratulated me for that very reason years ago!
    I have my fingers crossed for you that this recent nightmare phase will pass somehow.
    Another brilliant post in the middle of all this, and touched on everything - including medical staff
    gaffes!!
    Truly truly I hope you feel better. :)))

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    1. Hi Barbara,

      Kudos to that receptionist. She's absolutely right. We do what we can.

      Thanks for always reading and for always having something encouraging to say. This weekend is feeling much better than the last.

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  4. My last relapse was "cured" with the infusions. It was supposed to only be three days but three days turned into 5 and I wanted to murder EVERYONE! At first I had no emotions but was able to do all the things... I don't know if it was the combination of the nurse telling me that, surprise! she would see me tomorrow and probably the next day when I was leaving on my pretend last day. Or if it was the steroids finally hitting me but I swear I saw red for like a week or two. That and I wanted every fast food imaginable. Smh ����‍♀️
    Sending you love and light ✨✨✨✨ ��

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    1. Steroids are a total mind-fuck. I'm so glad they helped your relapse. I've had some 5 day courses in the past and they are really tough.

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  5. Hello, I, too, have MS. A few months ago, after not meeting the criteria for the Ocrevus trial ( walking 100 meters independently with no cane), I started doing some research. I had been on Copaxone (stopped due to allergic reaction), And Tecfidera (started it walking independently, within 6 months, I was using a cane). I found the Coimbra Protocol using high doses of vitamin d3. It is not a cure, it is a lifelong treatment program done under a Protocol trained doctor's supervision. I started it on October 6, 2016. Had a small relapse in February 2017, my left leg started ragging, like my right has for years. Scared me. With my doctor's approval I upped my vitamin d3 dosage by 50,000 iu. In THREE days, my leg was back to normal. That has NEVER happened, even with steroids. I have been stable since October. No new symptoms have shown up and stayed. My existing symptoms have not worsened. I decided to ale charge of my own health and try it because at the rate I was going I was afraid I would be in a wheel chair by December 2016. This is a treatment program. It is NOT a cure. Here is a link to a FB group that was very informative and helpful to me. They did not pressure me, simply pointed me in the right direction so that I could gather information and ask questions to help me make an informed decision. https://www.facebook.com/groups/vitamindprotocolnorthamerica/?ref=group_header
    If it doesn't link correctly, it's call the Coimbra Protocol for Ms and autoimmune diseases , North America. Good luck.

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    1. Thanks Becca. You upped your dose by 50k or to 50k? I've been taking 10k for awhile but I'm intrigued. I've looked at the FB group and I've already sent an email to my ND. Thanks for this testimonial. I'm so glad this helped you.

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  6. Steroids are the WORST!

    I mean, I feel okay, but not shower-okay. >>> I feel ya on this!

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    Replies
    1. I felt proud of myself for changing out of my pyjamas and into yoga pants. That I later slept in.

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