I’ve been meaning to update the blog with my post-Lemtrada experience sooner than this but here’s the thing: I’ve been asleep.
If you’re a regular reader of this blog you understand how hard I try to not let this disease define me. You understand how much I hate my limitations and refuse to allow myself to accept anything less than close-to-normal. You also understand how much mental energy I’ve invested in not allowing myself to see any of the events of the past three years since my diagnosis as my new normal. This shit isn’t normal and I refuse to see it that way.
Then I spent a week in the infusion room destroying my lymphocytes. With each day that passed it hit me even more directly: This treatment is no joke. Now, no MS treatments can be categorized in the totally easy-peasy category and I’ve tried a few that were pretty damn scary for someone like me who happens to be JC+ but I was able to downplay it. It might be because the process of treatment with both Tysabri and Ocrevus was comparatively speaking pretty easy. Yes, each drug could do terrible things to my body and carried significant risks but after I walked out of the infusion room the reality of that risk kind of disappeared for me. Out of the room, out of my mind?
Walking into the infusion room five days in a row, finding myself temporarily paralyzed, walking out of the infusion room with the cannula still in my hand a couple of nights, hearing the 6AM wake up call each morning and knowing I had to go back and do it all over again…It made this treatment experience very different. As I sat in my infusion chair strategically positioned near the door and in front of a fan to prevent overheating I found myself with a lot of time to think. And think I did.
I’ve been doing this all wrong.
Five days in the infusion room does things to a person. There is just no way around it. You are captive with your own thoughts, your disease is your only company and you look up at the innocuous bag of fluid and realize it’s actually killing parts of you. Hopefully the right parts? But still. It’s a major occurrence. Five days in a row of it make it impossible to ignore or sugar coat. This is a big deal.
I’ve been putting the emphasis on the wrong things and ignoring important things. I’ve been hanging on to my old life by my goddamn fingernails and all the while knowing it had already slipped away. I just couldn’t accept it without some kind of better alternative! I realized I was taking this major treatment step not in an attempt to get my old life back, but in an attempt to figure out what kind of new life I wanted to have.
Don’t get me wrong. I have a strong feeling that I am facing a long ass road to whatever this new normal is going to be. I’m trying not to allow the realist in me to list all of the reasons why I will still be in limbo even with this new treatment under my belt (round 1 anyway). I’m trying to look at this new phase with hope and not fear of the seemingly inevitable. I am doing things I used to secretly mock…imaging the medicine bathing me in healing light, speaking wellness mantras before bed each night, imagining myself walking without stumbling…all of it. It makes me feel foolish! But I’m ignoring my inner realist and telling her to sit the hell down and shut up.
Mostly, though, I’ve been sleeping.
The doctor’s orders for post-Lemtrada infusion week are shockingly simple: drink lots and lots of water, pee, sleep repeat. My first inclination was to ignore it. I mean, I’m no freaking invalid. I can’t just rest! If I rest, it’s giving in. It’s allowing the MS to win, again, and goddamnit I’m tired of letting it win. Then something changed in my brain that signaled a very different response: You did something big. You took time off from real life to do something big. You need to give this big something that you just did a chance to help you. You need to just ignore whatever life is happening out there and focus on the healing in here. It will all still be out there when I’m ready for it. For now? The real action is in here. In my bed. Resting.
As my steroids wear off, things are getting interesting. Today I could barely walk and didn’t feel quite up to my stairs to get to the first floor. Usually, I would beat myself up about how pathetic it would be for me to stay in bed and sleep it off. Usually, I’d tell myself if I allow myself to slow down for even a few minutes I’d somehow find myself confined to my bed as recompense for the indulgence of letting myself rest. I didn’t do that today. I asked for help. I slept my face off. I’m about to go back and do it some more! Look at me go.
I did the stairs twice today. Once this morning to feed the kitties and once around 6PM to do the same thing. My angel of a nephew is coming in twice a day to scoop litter so I can stay away from those germs. My sister delivers supplies. My mom stops by with food. My niece made me a peanut butter and jelly sandwich today and delivered it to my bedside. These are things I would have fought before. I’m no invalid! Yeh. Taking a tumble down the stairs in my current condition was enough of a threat that I embraced it all with both arms.
Our entire way of life is about what we can do. How much we can accomplish. How much money we make that enables travel, adventure and material things. It’s such a giant mind fuck when you find yourself in a place where all of the things you’ve convinced yourself were critical to your happiness suddenly mean next to nothing. Perspective shouldn’t be this hard to come by! But it is. The funny thing is that as soon as I find this perspective I have to remind myself how easily I will likely find myself back in that place where I’ve lived most of my life: Don’t stop constantly running, BBAD, or failure will catch up to you! You will lose everything! EVERYTHING!
Anyway…
I’m not sure why it takes such drastic life experiences to teach me basic life lessons. I guess I’m not that very different from anyone else. I’m sure this lesson isn’t done being taught but I’m encouraged by my ability to embrace the slow, the quiet, the most basic of needs: drink lots and lots of water, pee, sleep. Repeat.
A big thank you to everyone who has reached out to offer support, advice, love. My fellow Lemmies have been invaluable! I know people like to talk shit about the superficial relationships that result from social media but I’m calling bullshit on that, too. I might not have ever met you in real life, but you have helped me more than you can know. I’m grateful.
And I’m also tired, so I’m gonna get back to it! Drink water, pee, sleep, repeat. Look at me go.
Valerie Speredelozzi
November 12, 2018 8:19 pmYou made it through the week, so you earned this sleeping time!
bethnigro0212@gmail.com
November 12, 2018 9:21 pmThanks Valerie. I’m gonna be doing it again in just a few minutes. Turns out I’m good at this part. 😂😴
Mike Strasheim
November 12, 2018 8:39 pmHi Beth
Glad you got through your first round , hope it all works out for you. I am very grateful for you keeping us all up to speed with this process, I can’t imagine the pain it must be to go through that for five days, I hope recovery goes great for you. Will continue thinking of you and hoping for the best. Good job,Beth.
Mike from Montana
bethnigro0212@gmail.com
November 12, 2018 9:22 pmThanks Mike. I appreciate your good thoughts more than you know! 🙂
Christy
November 12, 2018 10:35 pmDrink all the water, sleep all the sleep. Right now this IS your job. And healing mantras might be bullshit but then again they cant hurt!!
StephanieG.
November 13, 2018 4:10 amIt’s good to hear your still kickin and doing well.. and sleeping too.. And you are absolutely right for giving in and allowing yourself to sleep this time away. To give this medication every chance in the world to do what Its suppose to do. Hell, at 5(full) days in a row of Infusion room torture, I imagine myself willing to do pretty much anything… Like …. Giving up shopping on Amazon… for a week, maybe even two… Trusting my husband to do the grocery shopping.. Giving up my much loved and needed coffee.. And damn, I might even be willing to snort a line of fire ants, if the doctor said it would help to ensure the best possible outcome. Lol.. So sleep away Sleeping Beauty!
bethnigro0212@gmail.com
November 13, 2018 12:31 pmyou made me laugh out loud. Bring on the fire ants! I totally relate. But giving up Amazon? Girl. That’s a step too far. LOL
StephanieG.
November 14, 2018 1:19 amLol.. You’ll have to forgive me.. It was somewhere around 2 in the morning when I wrote that (I’m in Arizona). I almost gagged on the words when I reread what I wrote… Give up shopping on Amazon?!? Holy Shit… I must have been sleep writing (if that is such a thing..?) to even utter such words… Pure Blasphemy… Bring on the Fire Ants!!! Lol
Anne B in NC
November 13, 2018 10:26 amI don’t realize how much I look forward to your updates, until one pops up. Sleep like a boss, congrats on allowing yourself to need. My guess is you are first to jump and help others, but reluctant to accept the same help.
bethnigro0212@gmail.com
November 13, 2018 12:29 pmThat is so sweet of you to say Anne! I’m trying really hard to allow people to help me. It’s a good thing, too, since right now I can’t do much myself. 😉 My three-story house that I love is becoming my enemy. But I’m trying to be patient and allow myself to heal. So many lessons to learn.
angelagagz
November 14, 2018 1:36 pmHi Beth, happy your first round went well! I’m glad you wrote about how big of a deal the treatment is and those 5 days are. I feel like a lot of people in my own life don’t understand and certainly can’t relate
Positively Alyssa
November 15, 2018 10:42 amI am so glad you were finally able to sleep. I do know how hard it is to function when you haven’t been able to sleep. I hope the last part of your week is going well and I hope you have a very lovely and relaxing day Beth!!!!
bethnigro0212@gmail.com
November 15, 2018 5:37 pmOh there’s been a lot of sleeping going on around here lately. 😉 I’m loving every minute of it. I hope you’re well, too, Alyssa!
Positively Alyssa
November 16, 2018 4:44 pmI am glad you are getting good rest, you definitely need it. From what I am told, rest helps heal our bodies!