5:00am - I workout with several Camp Gladiator friends, usually outside in a parking lot at one of the locations around my house. In the summer, it's really hard for me to workout on hot/humid days; in the colder months, the bite of the cold air can be a challenge, too. People with MS have wonky thermostats, and our bodies are extremely sensitive to weather changes; they cause our symptoms to really crank up the volume. But today, it's okay. It's cool and mostly comfortable outside. I don't run during the workout; not because I can't, but because I know I will suffer for it later. Running and excessive plyometric (jumping) work tends to tax my legs too much these days, and it can also cause my feet and thighs to go numb during a workout. So I mostly walk, and I modify almost every exercise. My arms are weaker these days, too, so I have to account for that. I've learned several "Guidelines" for MS patients, in regards to exercise, but my favorite are these: 1. Don't ever push through the pain, and 2. If you feel WORSE two hours after the workout ends, then you did too much. So, I pace myself. I may not sweat or strain as much as I used to, and I'm definitely not the fastest person there. But I go, and I get some movement in, and that's enough for me. The encouragement from the people there, many of whom know what I'm going through, is just an added bonus.
6:15am - I make sure to stretch and sometimes foam roll when I get home. My muscles and tendons are prone to spasticity, which affects my mobility and causes pain. When I miss stretching after a workout, I usually pay for it. I get ready for work and get the kids up for school.
7:30am - Finally in the car to take the kids to school and head to work, and all I want to do is go back inside and take a nap. I'm usually exhausted by the time I sit down in the car. Some days, I start out the day with nerve pain in my legs and/or my face; those days are particularly difficult. Constant pain only adds to the exhaustion.
7:45am - After dropping Lily at school, where I stay in the car and go through the drop-off line, I end up at Eli's daycare. Next year, they'll both go to the same elementary school; but he's still in Pre-K at his private daycare. Because my legs are hurting and weak, I pull into one of the two handicapped parking spots at the front and hang the tag on the mirror. Sometimes these spots aren't available, because parents have been known to use them when they're in a hurry. I guess they figure that there aren't that many of us who use them legitimately, and they'll only be there for a few minutes. I try not to let it upset me; stress would just make me feel worse. I worry, as I get out of the car, "Will today be the day someone tells me that I don't "look" handicapped?" It happens, although I've been lucky enough that it hasn't happened to me yet.
8:05am - I get to work, pull into one of the many, monitored handicapped spots, and gather myself before going into the office. Once I get settled at my desk, I'll take my DMD (Disease Modifying Drug) and my daily Vitamin D3. I take them every day, around the same time, because you really shouldn't skip a dose of the DMD, unless you want to have a relapse.
10:30am - I'm starting to feel fatigued already; when it hits, it hits like a brick wall. It hits, regardless of whether I've had 1 cup of coffee or 3 cups and an energy drink. The number of hours I sleep makes no difference. My immune system is malfunctioning, and the processes involved in the disease of MS cause extraordinary physical and mental fatigue. Because I'm tired, my brain starts to misfire. I start to struggle with focus, comprehension, and word-finding. My legs feel like I've run the Boston marathon.
12:30pm - Lunch time. I'll try to eat something relatively healthy, then follow that up with more caffeine and one of my supplements for nervous system health. I try to wash my dishes in the sink, but my hands drop them unexpectedly, getting water everywhere. I think to myself, "This is why I don't hold anyone's babies or children anymore. I can't even hold onto a Rubbermaid container." And it's true. I have no way of knowing when the signals will get crossed and my hands will let go of something. It's happened more times than I can count, and it's one of the most frustrating symptoms.
2:00pm - My legs are killing me. The pain shooting down the back of them feels like someone stabbing me with a knife along the entire length of my hamstrings. Today, I'm also struggling with spasms in my right hand, along with loss of coordination in my pinkie and ring finger on that hand. It happens sometimes. I clench my fist and shake out my hand to try to settle it down. Sometimes it works, sometimes it doesn't.
3:45pm - The nerve pain has led to nausea, so I take an anti-nausea pill from my purse. It helps a little with the tummy pain, but the nerve pain is still there. I now have a headache as well, a known side effect of the pill I took.
5:00pm - It's time to go home; despite the pain and craziness of the day, I was able to get quite a bit done during my day. I've been blessed with a great job, working within a great company, for an amazing boss. They are all aware and supportive, and I love the work I do.
5:40pm - I text Corey from the car, in the parking lot at daycare. "I'm feeling really crummy," I tell him. "I need to rest a little bit when I get home." I go in to get Eli, and his teacher tells me he wasn't listening very well today. I know she doesn't think anything of passing this along to me; she thinks this is what she SHOULD be doing, and I don't disagree. But as I stand there, with pain shooting through my legs, fighting nausea and a headache, all I want to do is fall down into one of the little toddler chairs. I impatiently say, "I'll talk to him, but I really need to go; I don't feel great."
6:00pm - I get home and Corey comes out to the car to help me get inside with Eli and all of his take-home stuff from school. My legs are barely functioning by this point in the day. I get inside, set my stuff down on the counter, and go upstairs to change and sit down in our bedroom for a few minutes. I know I need to make dinner, and give Eli his bath, and make lunch for tomorrow. But I'm so incredibly worn out by what it took to get through the day. Because of this exhaustion, and the stress of the responsibilities the evening holds for my tired, sore body, my pain level may increase. I head into the bathroom and take one of my muscle relaxants, then head back downstairs.
7:00pm: Dinner time. Many nights, Corey already has dinner ready, or he's preparing it when I get there. Most of the time, we eat in the living room, so that I can sit comfortably and put my feet up on the ottoman. It helps my nerve pain to have my legs fully extended when I'm resting. Sometimes, the nausea will keep me from wanting to eat a regular meal, so I'll opt for something quick and light - a bowl of cereal, soup, or toast. Most nights, I can still eat normally, though. If the Trigeminal Neuralgia (called TN, the facial nerve pain) is bad in my jaw/cheek area, then I have to be careful what I eat. Certain textures and temperatures will crank up the pain.
8:00pm - Story time. If my TN is acting up, I won't read the bedtime story, because talking aggravates the pain. Instead, Daddy will read. We say prayers and put them in bed. They sometimes ask God to help Mommy feel better, when I'm having a really rough day. I hope this journey is teaching them to have hearts of compassion.
9:00pm - I finally head to bed. The muscle relaxant I took earlier in the evening usually helps me avoid tremors and spasms at bedtime; but, sometimes, if I'm overly tired, they come anyway. Those are the nights when I have to adjust other medications, just to help me get to sleep.
So, now you know. This is what many of my days look like. Not EVERY day looks like this, though. Some days are better, and I LOVE those days. Some days are worse.
Every day is a blessing, though. (All you have to do is watch a few episodes of ER to find that out; yikes. THOSE people have real problems.)
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