What’s it like to have MS?
The truth is, I don’t feel sick because I don’t understand I am sick. In fact, I have to ask Kristi often what the symptoms are that she sees in me and if they are improving or not. Recently, I thought that maybe my legs have been getting worse, but there are a few factors I have to consider. Like the fact that I fell within the last day, and that is hard on my legs and back, or the fact that I am I working myself too hard with my TENS unit.
So here is what I go through on a typical day. Remember, I have better days and worse days, though the better days are now more often than my bad days by a ratio of 2 to 1. And my bad days now are very similar to what my good days were at the end of last year.
I wake up every morning very groggy, just like any other normal night person. First thing in the morning, I have a lot of strength, but lose most of it when I lay in bed trying to fully wake up. There does seem to be a good connection between my brain and extremities, but some days my tremors do the thinking for me. During breakfast we watch a Netflix show, and on my bad days, I will fall asleep about halfway through the show. On my good days, I will not struggle at all, and on my typical days, I get tired but can stay awake. My speech is generally very strong every morning.
Around lunch time, I am still very alert and decently strong on a typical day. During lunch, we watch another 40-minute show, and I never seem to get tired during it even on my bad days. My speech might be a little slurred if I don’t consistently drink 4-6 ounces of water every half an hour.
In between lunch and dinner, I start degrading pretty fast. I have to take niacin to start getting my strength back in my back and neck muscles. I often have trouble with my speech, but my breathing stays strong if I keep drinking water. After I start flushing from the niacin, which I absolutely love to go through, I begin to feel rejuvenated. My muscles become very responsive, and I wake right up. I even get a second wind that not only affects my muscle strength, but also affects my mood in a very positive way. As an example of the strength I get from niacin, yesterday I was able to go outside and then get myself back into the condo (up the short and steep ramp) with no problem after I took niacin. Before I took the niacin, I would not have been able to get outside, which is easy to do, and I certainly wouldn’t have been able to get back inside by myself. I attribute that muscle strength to the niacin.
By dinner time, at 8 pm, I am laying down on the bed again, and strength, speech, and alertness come back very quickly. There usually is a short period of time around 10pm where I begin to lose strength, but it comes back an hour later. Generally after that time, I will have no more strength issues the rest of the day.
We’re definitely seeing improvements. For example, all throughout my day, I never have any dizziness anymore (which I used to experience almost non-stop all day long), and I never feel exhausted, just sleepy.
To make sure I drink enough water, I have set an alarm on my phone to go off every 30 mins. I started this 3 weeks ago, and had big problems on only one day in which I ignored the alarm. I know I used to have back problems with my MS, but any of the pain I feel in my back these days is only from my tailbone hurting from sitting in my wheelchair. Boy I can’t wait to get out of this chair and start walking again.
If you know of anyone who suffers from MS, here are a couple of links I recommend:
Every day is still a struggle, but it’s getting easier and easier each day. Things will only get better from here.