MS is a disease where each person’s experience is different from another’s. With three different types of diagnoses, Primary Progressive Multiple Sclerosis (PPMS), Relapse-Remitting Multiple Sclerosis (RRMS), and Secondary Progressive Multiple Sclerosis (SPMS), the disease can behave differently from person-to-person. Within each type, there are a variety of symptoms that may not be experienced by each person. A typical day with MS will vary, but I wanted to spend today’s post discussing mine.
A Typical Day with MS
If I am in half-marathon training, then I will get up with the alarm clock really early. I typically get 5 – 6 hours of sleep which I know is not enough, but it’s hard to go to bed immediately after putting Jai to bed. I want to spend time with Ash, so I don’t get to bed until 11pm most nights.
My mood and energy are generally fine on these mornings. I keep my exercise gear set out so I don’t fumble looking for it. This allows me to sleep as late as possible before making the 15-minute drive to run with my mom.
After my run, I have to rush back home so Ash can leave for work on time. I will be full of energy at this point, but I start my first cup of coffee for the day. I probably drink 3 – 4 cups of coffee throughout the day and at least one cup of black or green tea in the afternoon to keep my energy levels up. I definitely do not drink enough water, which may be hindering my energy levels in its own way.
On the mornings I don’t run, we wait until Jai wakes us up, which is about 30 minutes later than the mornings I run. We do about 40 minutes of cuddle time before getting up and starting the day. I will make Jai breakfast while we listen to the morning news.
I try to spend my mornings when I have the most amount of energy doing whatever is most important to me, so I sit down and plan out my day with a “to-do” list. I figure if I can get at least 3 things knocked off of the list, it was a productive day.
Jai likes to spend his morning in solitary play (when we stay home), so I use that time to write or work on the blog. I also like to give him two sets of “rest” periods during the day: morning and afternoon. The morning rest is just in a quiet space with minimal distraction so he can chill, while the afternoon rest is when he naps.
During the morning rest, I try to get as much done before taking a shower. I find that because I like hot showers, my energy is always drained for several hours afterward. So towards the end of his rest, I will shower knowing full well that my productivity levels will drop exponentially.
I will get Jai up, we’ll eat a snack or lunch depending on what time I put him in for rest and then we’ll do some activity until his next rest period. If he sleeps, I let him sleep for as long as he wants but I know that means he won’t want to rest/nap in the afternoon. It’s during this two-three hour period we’ll go to a park, play inside/outside, or run errands.
If I am able to get Jai to actually nap, I will go upstairs and rest myself. I am usually exhausted by this time, so I will fall asleep for at least 30 minutes. I will then spend time resting until he wakes up, or if he’s sleeping particularly late, I will wake him up so he will sleep at bedtime.
After my rest and about 40 minutes before Ash heads home from work, I will make dinner. Once Ash comes home and dinner is ready, I find myself exhausted and need more rest, especially on the days I don’t get to nap myself. So I leave Ash and Jai alone to play together until it is time for bed. Ash will do bathtime and start reading stories in which I will pop back in for the final story and say goodnight.
Once we leave Jai to sleep, Ash and I will spend time together catching up with our shows, talking, or relaxing. Then we’ll head off to bed.
I haven’t tracked it, but I probably have more good days than bad days in a typical week. I consider a good day one where I have enough energy to get several things done on my to-do list, or able to do a major activity like going to the zoo, playground, or some other toddler-oriented fun activity with minimal fatigue-levels.
On good days, my stress levels are low, my energy levels are high, and my emotional state is well grounded. It’s hard to remember these days because they are so unremarkable, and honestly, that’s how I like my typical day.
I still have bad days. Jai might be temperamental, I may have high fatigue, or emotionally everything is hitting me wrong. I find that these are followed by high-stress days or occur on high-stress days. Bad days are the ones where my body tells me I am doing too much and I need to slow down. The fatigue can bring me down emotionally and I feel upset about my MS. There are many bad days where I imagine what it’s like to not have constant fatigue and how much work I would get done.
There are other days where I try to imagine my fatigue is normal and everyone is actually as tired as I am. Those moments help me work through it, but I know it’s not the truth. I have fatigue and it does impact my ability to get everything done. Most everyone has more energy than me.
Funny enough, I don’t experience these “bad” days when I have an important run or after over-exerting myself with exercise. If I do have a bad day from exercise, I actually explain that to being under-prepared, like not drinking enough water or eating enough recovery food. I never blame my MS because I don’t believe my MS played a role in a poor exercise day.
A really bad day is when I am starting an exacerbation or flare-up. Then it means I will have to contact my neurologist and consider my next couple of steps for managing the attack.
Whatever you want to call them, I still get them.
I don’t like to acknowledge it, but apparently, my fatigue is considered a flare-up. Because it is so present in my daily life, I notice it as background noise. It’s just the way it is for me and because it’s normal, it’s not a flare-up.
My exacerbations so far: Optic Neuritis, limb numbness and function loss, tensing of muscles (mostly my neck), MS Hug, L’Hermmittes Sign, and memory fog.
Two ways to know I am stressed in a bad way (I am a firm believer in positive stress): L’Hermittes sign and/or Neck tension. If my neck gets stiff or I can feel the radiating electrical twinges when I lower my head, then I know I need to slow down, step back, and take a break.
I’ve only been hospitalized once, and that was pre-diagnosis. I was on a steroid IV drip to help reduce my Optic Neuritis inflammation. I’ve done a decent job managing my MS to prevent me from having to go back into the hospital, but I still have had to take heavy doses of steroids to do that in the middle of an exacerbation.
My last noticeable exacerbation was in February of last year when I had a bout of the MS hug. The fact that I was able to keep my exacerbations away for over a year without medication is an accomplishment for me. Once I start my medication, who knows what I will be capable of accomplishing. The sky may be my limit.
The Emotional Impact
My MS is part of who I am.
I try to not let it define me in any negative way, but until there is a cure or a way to reverse its effects, I will always be tired and constantly checking my stress levels. It will always be a part of me.
Back in November, I wrote about how grateful I am for the diagnosis because it helped me reprioritize and work towards lowering my stress levels for the better, but I still struggle. I do not like having MS, I wish it could disappear completely and I could move forward without the chronic illness. I am frustrated that once I start back on my medication I will be on it for life.
But, MS has helped me reframe my emotional thinking as well. I am taking my emotional work more seriously and engaging in self-compassion more and more as a means to help manage my illness. I can’t play the “what if” game, but I do imagine I am in a better place than I would have been if I was “normal.” There wouldn’t have been motivation for me to change, I think.
That’s my daily life with MS. It’s not perfect and I am sure there are plenty of areas that I need to improve, but I am happy with where I am at and where I am going.
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Featured photo credit: Michelle Melton