Week 3 - The Big Crash

Week 3 - Post Lemtrada

November 10, 2019

We knew it was coming and it's here...the Big Steroid Crash.  I could tell it was coming last weekend. My energy level had been dropping throughout the week and by last weekend it was pretty low.  I still wasn't sleeping well and with the steroids wearing off, I had nothing to boost my energy and get me through the day.  I was tired all day on Sunday of last week.  On Monday I worked outside a little bit, I spray cleaned some of the windows on the house (in the back and side of the house), by the time I came in and took a shower, I was completely drained that was all I had in me.  By Tuesday, I could tell my mood was down in the dumps with my energy level.  It's kind of depressing itself;  I was getting used to being in a better mood.  I was easily irritated this week too.  I got mad at my husband for sitting in the recliner because I had been sitting there (before he came home) and I was pissed off on Tuesday when I had two people ring the door bell while I was doing my therapist session.  I only had something going on for 1-50 minute block of time all day and folks chose that time to come ring my doorbell plus the dog was whining to go out then to come back in.  It was also annoying me that I was starting out the week doing a bunch of shit I didn't want to be doing.  I had planned to be bored and take care of things I've been meaning to do around the house and it's just been a parade of people coming through the house the last two weeks to fix things.  I just want to yell "leave me alone!".  On Wednesday, I burned some sage. 💆🕯

My sleep still hasn't gone back to normal which is not helping my mood/irritation level.  I stopped taking the Tryptophan; Monday night was the last time I took any kind of sleep aid except for Friday night (I took it at 2am because I wasn't able to fall asleep).  Except for Friday night, I've been falling asleep pretty quickly but I still generally wake up in the middle of the night to go to the bathroom and have been waking up early.  Some mornings earlier then others.  Because I don't have the steroids in my system anymore to boost my energy level, I've been dragging during the day.  I ended up taking a 3-hour nap on Friday; I was still tired so I didn't think I would have trouble falling asleep at night but I did.  That's why I ended up taking the Tryptophan; I fell asleep within 30 minutes after I took it.  By Saturday night, I was drained completely...it was either the lack of good sleep all week and/or the turkey we had for dinner but I passed out on the couch around 8:30.  I slept until 11 and was kind of awake for about an hour before I headed to bed.  I slept until 6:30, used the bathroom, went back to sleep and struggled to open my eyes at 8.  I slept over 10 hours and still struggled to open my eyes.  I think this is my crash #2 where my body finally starts catching up on the sleep I lost.  

I started taking my Vyvanse again on Sunday.  I had been thinking about it for a few days and when I got up on Sunday still so tired; I decided it was time.  It definitely helped get me through the day and boosted my mood a bit as well.

The other thing going on is a relapse.  On Tuesday morning, I got up in the middle of the night and had to stop for about 30 seconds before my legs wanted to go again.  The technical term is spasticity but I call it bouncy.  How it shows up for me is that when I first get up in the morning, I need to pause while my legs bounce under me for a bit then I go about my day.  It's only ever first thing in the morning.  I think it started sometime in 2016; I also always get finger tip numbness along with my legs.  The finger tip numbness started in mid-2014; we actually thought it might be carpal tunnel.  My neurologist had me wear a wrist brace for a bit.  Obviously, at some point I realized it was coming and going.  I started a symptom tracker spreadsheet in 2013 but I am not always good at recording everything especially when it's a 'same 'ol relapse'.  They kind of come and go and you don't notice as much.  Lately, the bouncy legs and numb fingertips have been a precursor to numbness or some other relapse.  So far nothing else has shown up and I don't have that buzzy feeling in my spine when I stretch my chin to my chest.  That is usually another sign that something is coming on.  It's a little disappointing that I am having a relapse so soon post-Lemtrada especially after being on so many steroids.  Tuesday morning was the worst of it though.  It made me realize I had been having that sensation for a few days before and since then I've had it every morning but more mildly.  The finger tip numbness has been pretty constant.    

I've been doing what I can to take better care of myself.  I had a good virtual private yoga session with my yoga teacher this week.  We worked on building a practice that will promote healing of my lower back and support my MS.  I've been trying to do my practice every morning.  Some days, I just get up and go or I lay back down for a while and by the end of the day I still haven't gotten to it.  That's my typical MO and I think most moms could say the same; we put everything as a higher priority then taking care of ourselves. I started making smoothies again, making sure that I wash or rinse everything including the frozen berries.  I also started making/drinking celery juice. Again, making sure everything is cleaned first.  Celery juice first thing in the morning on an empty stomach is really good for you.  The natural salts help to balance your pH and your stomach acid, it's hydrating and flushes toxins.  The first couple weeks after my infusion, I just wasn't sure what to eat and was being overly careful.  This week, I am still being careful but have loosened up a bit.  I need more fruits and vegetables in my diet if I want to stay healthy. Before my infusion, I bought myself some locally made bone broth.  It's also very healing and I wanted to drink it in the mornings especially since I am not able to have herbal tea right now.  I used to buy it occasionally but buying it more regularly gets expensive fast so I bought myself an Instant Pot and I am going to make it myself.  I made chicken noodle soup with a whole  chicken on Saturday and it turned out great.  I am going to try making the bone broth next week.

I am up way too late so this is going to be all for this week.
P.S. - I will be going to the lab next week for the first of my monthly lab work and I'll get results at my neurology visit on the 18th.
P.P.S - This will be my last format change. 😉

My Basic Smoothie Recipe:
1.5 cups frozen mixed berries
1 cup coconut water
1 small container dairy free yogurt (I usually use coconut milk plain or vanilla)
0.5 of an avocado
a handful of baby spinach
1 tsp of Dulse flakes or the contents of one Kelp capsule
~ a tbsp of honey (not using honey at the moment due to potential bacteria)

Instructions for bone broth that my friend forwarded to me:
https://40aprons.com/instant-pot-bone-broth-gels-whole30/#wprm-recipe-container-13917

Recipe for the Chicken Noodle Soup I made:
https://recipes.instantpot.com/recipe/chicken-noodle-soup/