This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.
What good is discussing diet and lifestyle changes if I don’t reveal the ongoing results?
Doing an honest self-assessment of any sort is hard, particularly when trying to find ways to manage an unmanageable disease. There’s a huge desire to make everything a “success” or engage in placebo effect-like thinking, but that isn’t always the case.
Overall, I feel like I am managing my MS better. Still, on a day-to-day basis, my mileage may vary because of various external factors.
Current Health Self-Check
Currently, I am not doing so well. Not necessarily because of the MS, but I have a weird seasonal head cold. Drippy nose, sore throat, and exhaustion. I can only assume that if a person without MS gets a virus like this, they may feel wiped out but can go about their daily lives with minimal interference.
With MS and any illness, I get so wiped out that getting out of bed is a hardship. Ash had to stay home until Jai went down for his morning nap on Tuesday because I was so worn out. I needed the extra couple of hours of sleep. This afforded me before I was able to start the day and take care of a toddler. Jai and I stayed in our PJs and read lots of books and minimized movement so I wouldn’t overdo it.
This is a crucial example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm. Still, infections are a significant cause of flare-ups, so there is a risk of needing to get steroids to treat the inflammation. I don’t get avoidant if I know someone is sick. Still, I do recognize that even a simple cold can knock me off my feet for a couple of days that might just inconvenience someone else.
I usually wouldn’t write about getting sick factoring into how I am currently feeling because I tend not to get sick all that often. Still, since having Jai, it has become a more common occurrence.
Beyond the cold, I am feeling okay overall. There’s been some emotional disappointment in not being able to maintain my diet as strictly as I wanted. I am doing what is best for my overall health, and that is more important. My brain fog and memory issues haven’t lessened, but that may be because I am not doing enough mental exercises to help stimulate neuron repair.
Fatigue is still an issue, but not so much on the days that I am more active. I find high-cardio days mean that I have more energy throughout the day. On the days I only do yoga, there might be a more significant dip in energy by the afternoon.
Being completely honest: I haven’t noticed many changes since my last check-in after my diet reset. I feel more active, happier, less sluggish, but no apparent changes to my MS symptoms.
That’s not entirely true – I have had one change in my symptoms. I experienced the MS hug twice in as many weeks. The first time was my lower back: it felt like I strained it, and it went away quickly as it came. The second time caused me to double over in pain because it felt like I had a heart attack.
I am not sure what the cause might have been, I suspect it was after I had a couple of days of poor eating (bad weather and we were fighting off colds-again-). I have never experienced pain in any of my MS symptoms, even when I have optic neuritis, so this was a completely new feeling for me.
Since being more careful about my eating and making sure that I stick to healthier options, I haven’t experienced the “hug” again. I am not sure what to blame other than my body got used to eating really healthy and was “angry” by the influx of bad food and letting me know about it.
It got inflamed and proved the point I’ve been trying to make: eat anti-inflammatory and find that I do much better.
One thing has drawn into sharp relief: no matter what changes I make, I cannot entirely prevent the outward presentation of my MS.
This isn’t to say that what I am doing is not working. In fact, it may be working because if I veer off the path, I feel it.
Yet, I must be frank with myself and what I am doing: none of this is a cure-all. It will not solve all my MS problems. It is helping to mitigate those problems. Still, despite my best efforts, I cannot control my disease outside of medical intervention.
Once Jai is weaned, I will have to get back on the medication my neurologist recommends. My diet and exercise will complement my medicine and help increase its efficacy. Still, I cannot treat this illness with food and exercise alone, especially if I want to maximize my quality of life in the next six years.
It’s hard to accept these truths. Still, I must let go of my insecurities and feelings of personal frustration at the disease. I cannot control MS, and so it is pointless to allow myself to be stressed over the lack of control.
I am doing the best that I can to be there for Ash and Jai and, most importantly, myself.
I haven’t experienced an MS Hug since this post, which is nice. A few weeks ago, I experienced pain directly relating to my MS. I’ve been lucky to avoid experiencing pain with my MS, so far. I took a hot shower, a massive “no” with MS, and found my thumb on fire as if I dipped it in boiling water. The sensation lasted for thirty minutes, but it was disconcerting.
I always get concerned that when I experience these “new” symptoms, that it will become the status quo. Like, I’ve opened the door to experience the symptoms, and that door may never shut. Granted, I had this moment while under a lot of personal stress, and so I took actions to adjust my stress-levels. But I can’t help be worried that getting a new symptom is a form of progression.
Fortunately, I went to my neurologist a few weeks ago, and they were unconcerned with the appearance of the new symptoms. Because I’ve experienced a minimal amount of symptoms despite not being on my medication, they know that I am doing fine.
Time to Take Your Meds
I have been off my disease-modifying medication for over four years. Previously, I was on Tecfidera for seven months after taking Copaxone for a year. I had to stop taking Tecfidera due to a lack of clinical trials, and it’s interaction with pregnant women. Because Ash and I were starting a family, I needed to be off it for the safety of the baby.
Because we weren’t sure if we were going to have a second, I had to wait a little longer before jumping back on the medication. Ash and I decided to stop with Jai, so the earliest I could consider getting back on my medication would be at the beginning of 2020. In my visit with my neurologist a few weeks ago, I began the process to taper onto Tecfidera in January. I wanted to be past the holiday season before I restarted the process, given what happened last time.
When I tapered onto Tecfidera, I was fine for the first week with a low dose. But when I went up to the full amount the second week, I experienced the worst pain imaginable. It felt like someone stabbed my stomach with a dull knife and kept twisting it. Twice, the pain was so bad I had to go to the Emergency Room because I didn’t know what was happening to me.
Even going through childbirth, remembering the pain during that adjustment period still seems worse. Contractions allow for a tiny break in the pain. This was unyielding and could last up to two hours.
I later found out that it was an extreme form of reflux. I didn’t take anything for it ahead of time because I hadn’t known to prepare for it. Within twenty minutes after a meal, I would experience this pain. I was doubled over, on my bed, crying over how much my stomach hurt.
Kind of hard to willingly allow yourself to go back to taking the medication, right? But after my body adjusted, it took about a month, I was fine. I would experience the occasional flushing, but for the most part, I was side effect free. Taking this medication is a means to manage the small symptoms and help slow the progression of my MS even further. I am handling my MS without medication. Still, I know that continuing to be relatively symptom-free and lack of progress is not guaranteed.
I want to squeeze out as many quality years as I can for Jai’s sake. If that means spending a month in bed with excruciating pain to gain five more quality years, I am going to do it.
Some Completely Unscientific Predictions
I am going to be completely irresponsible right now and make some predictions about my medication usage.
- I spoke with my neurologist to get prescription-grade omeprazole to start with the Tecfidera, and I will also be following a diet if I had GERD. Taking preventative measures may help reduce the severeness of the reflux pain.
- My body may have some “memory” the last time I had the medication, so I may not have the reflux symptoms this time around. This is a very unscientific prediction.
- I am eating healthier, to begin with, very close to the GERD diet because I am whole-foods, plant-based to aid my running. When I started Tecfidera the last time, I was eating a lot of fats, sugars, and empty calories. My stomach may handle the medication better because I am eating better.
- This is the big, unscientific prediction. Because I am doing the complementary treatment by eating healthy, exercising, and reducing my stress, the Tecfidera may reduce my minor symptoms. Previously, I was not fit. I was extremely stressed out and unhealthy, so the Tecfidera probably worked overtime to reduce the significant exacerbations. This left me to continue to have fatigue, brain fog, and other minor MS symptoms – or minor exacerbations. But, I wonder if because the Tefidera won’t have to work as hard, it will help alleviate some of my fatigue, brain fog, and the occasional pain flare. There will be no way to prove this, nor a guarantee it will be the case, but I am going to monitor my minor symptoms to see what happens for the first year.
Tecfidera isn’t a cure-all, so I don’t expect any of these predictions to come true, but I am interested to see if one or two do. I am sure I am expecting too much of my medication even to have these thoughts, but it helps pass the time.
A final thought as I go back on my medication: this is going to be rough for a while psychologically speaking. Taking medication twice daily, specifically for my MS will be a constant reminder of my MS. I do have daily symptoms. Still, fatigue is easy to dismiss with a poor night’s sleep. Brain fog is absent-mindedness. But medication for MS means I have MS.
I have worked through these feelings once before, but I will be revisiting those feelings again in January. I think I will manage them fine as I remind myself that I am doing this for myself and my family.
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