The problem is increased numbness. A visit with my favorite neurologist led to a fact-finding mission. She knows I'm a girl who likes a plan, so a plan we made. I will get new MRI's on Monday, May 21st (to kick off my birthday week, ha ha) to see if the MS is active again or if the numbness is a side-effect from so many antibiotics and a prolonged infection. Infection is a big NO if you have MS because it messes with your already less-than-stellar immune system. I was so shocked to get "normal-person sick" because I'd been perfectly healthy for over a year. I thought surely my vitamins and healthy eating would protect me forever, but that wasn't the case. Following the MRI scans will be a delightful nerve conduction test--I'm not even commenting on this one yet.
MRIs are still so weird and unpleasant for me. Wish me luck tomorrow!
So, in case you are wondering, here is what a day in the life with my MS looks like. Remember that MS is different for everyone and changes throughout your lifetime. Here is life today...
I wake-up early throughout the school year. In fall and spring, when it's not as cold, I'm up at 5am to walk. Right now, I'm rolling out of bed closer to 6am because of the last couple months.
In the summer I'm up around 7am-8am and leave for an hour or so hike or bike ride. I LOVE IT! I can't regulate my body temperature, so once the temperature is around 85, I cannot be exercising in it. I'm fine to run errands, walk around until about 95 then I have to be inside. It's a pain, but I've learned heat makes me numb, stupid (cognitive fog), sluggish and I can't cool down. Likewise, cold is an issue. Cold, for me, is intense pain, shaking, can't warm up. Stupid MS. Obviously I need to live somewhere with a constant 75 degrees. Hawaii anyone?
Alas, I digress--back to mornings. I'm sore, a little stiff, but limber-up pretty quickly. I pray, stretch out my neck and move my feet around a lot to make sure I have sensation before I get up. I mean, I did have a good 6 weeks without feeling from my calves down back in 2016, so you can't blame a sista for checking. I give thanks I can walk--like for real, I don't take it for granted. I have a lot of body awareness and do a quick scan to make sure everything is normal.
This matters because MS symptoms come and go--daily, even hourly. However, if a new symptoms stays for 48 hrs, you might be looking at a relapse and that's a big deal.
Let's be real, I was kinda weird before. Now I just have a fancy title to go along with it!
I do my business, get ready for school, wake the kids and make a morning smoothie. Right now I'm into Dr. Axe's Bone Broth Keto Chocolate Protein Powder with almond milk, spinach and ice. Weird, but I dig it. Right now I drink it on the way to work while Em drives me (she has her learner's permit and I have found I'm cool with being the one to be shuttled around).
Teaching. I'm so in love with what I do, it's ridiculous. I just have to pace myself. If I have a busy teaching day (physically or emotionally), I'll need to have a quiet evening and vice versa. I feel good when I move, so I do try to move around as much as I can when I teach.
On cooler days, I immediately walk when I get home. In not-so-cool-times, I try to walk in the evening. I also do weights/posture workouts every other day. One day, the pool in my backyard will be finished and you'll find me swimming each day too. I also try to stretch before bed.
I've learned I have to have time to decompress whether it's a walk, reading or praying. When I get home each day, I'm mom and a busy mom. I'm shuttling kids, being involved with them, cooking meals (although my kids are great to pitch in here), helping them with homework, etc. They just know if Mom is tired, she needs to sit for a bit. Self-care is a thing for me.
Every other night, I pull out my auto inject and do a shot. I put a warm towel on the injection site to heat my skin (thighs, hips or tummy). I prep the shot then. Next, I do the injection (slight sting), wait about ten seconds and slowly pull out the needle and stick an ice bag on it. Nate usually clips the needle and I head to bed. More on my Copaxone routine to come.
No cure, but I can't give up. Still me...just me with a weird MS thing:)
Do I think about having MS every day? Yes, every day, no exception. It took me a good year to accept and embrace it all and I have battled some depression along with way.
What does eating look like? No more emotional eating. Everything must be planned, I rarely eat on the fly--I just can't. I plan meals in advance and use FitnessPal when tracking carbs. See "My Treatment Plan" for all the exciting details.
What are flares vs. relapses? Flares are like a brief surge in symptoms. I have one around every 3 months. I don't know why. It starts with painful aches in my hands, then I have full body joint pain and usually end up in bed. For me, a flare feels like intense flu and it's quite painful. I can't eat much and have to be down. One day is usually horrible, then I can ride it out. Flares last about a week or so for me. They are a stark reminder of what my reality could be. They are scary and humbling. I am trying to figure it out, but right now, I just don't know.
A relapse is a new symptom or increased symptom that stays longer than two days. It can be a sign your MS is active. Relapse prevention is what my life centers around. I'm hoping my MRI tomorrow shows that I have not relapsed.
A basic overview. I'm grateful that I don't deal with most of these. Some I have had in the past (muscle spasms, itching, etc) but my nutritional changes seemed to get rid of them.
What are my daily symptoms?
- Numbness that comes and goes. It courses up and down my legs--especially when I sit. It feels like electricity or little bugs crawling. It's annoying, but not painful. If I do too much without downtime. Sometimes I feel like in my hands and on my face. Not often, but when I do, it freaks me out.
- Balance--I am not too tipsy, I have just found I have to pay more attention when I am walking. I can't really do treadmills, it's the only thing that throws my balance. I'm trying to run a little, but it throws me off too. I can't really whip my head around quickly or I feel that as well.
- Fatigue--I walk a tightrope (go ahead, cue the "Greatest Showman" song). It's a very careful balance of diet, vitamins/supplements, water, exercise, energy to feel good most days. Some days I have to lay down, some days I don't walk up stairs, some days I don't have it in me to go out. Most days I feel alright though, which I'm grateful for. Frankly, the cognitive balance to do it all is exhausting sometimes, but I can balance and that's a gift.
- Bowel/Bladder--I'll spare you the deats here, but it's a balance here as well. Having a BM is a big deal and I can't hold it like I used to:) Plus, I'm officially "in my forties" (ugh) at the end of the week...so, yeah.
- Temperature Regulation--if there was a "Most Annoying Symptom Award" it would be this one. As I explained above, I basically can't regulate myself so any temperature change, to me, feels gigantic. This also means I have to plan my outside time carefully and I'm an outdoors kinda girl, so it cramps my style. I have found that wearing tank tops (gasp) when I am active outside as well as cooling rags help with the heat. Don't judge me. In the cold, I'll have a crazy amount of layers on, don't ask if I'm pregnant.
- I also hate it when I say I'm hot or cold and people respond "well, it's not"...well, it is to me. As my neurologist said..."it's all in your head." This means that my body can't logically tell if I'm really hot or cold or not--it just responds. It's weird, annoying, but mercifully manageable.
- Eye Pain-now, I'm lucky because I do not have any optic nerve issues. However, if I squint, it kills my eyes. I also can't use my preferential vision for more than a second as that hurts too. Sadly, I've had to put my photography hobby on hold because of the eye pain. My last couple photos shoots were not great and the pain after was intense. So, for now, it's just my iPhone and I:) Again, no blindness or vision loss, so thumbs-up on this one!
- Emotional: I do deal with situational depression and anxiety that comes and goes. It's usually not too intense and only the people closet to me can see it. So far, mindfulness, mindset, and my faith help me through this part of it. If I seem off, know that it's never directed at a person--it's something inside of me.
I love you.
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