Life has been roller coaster of ups and downs since my last post. We had the holidays roll through, the start of a new year, and all the other activities that fill up a week and leave me mentally begging for time in a quiet cabin with a pile of books and a yoga mat by myself. But alas the demands of life (work, kids, spouses, pets) while wonderful and things I am grateful for continue to take away from things I want to do and downtime my body needs.
The funny thing about MS is that unless your disease has progressed, to bystanders, it is hard to tell there is an invisible enemy dragging you down. The last week has been tough for me. I know I have mentioned in past posts that what I struggle with what you can't see. The bladder urgency issues that mean I can't wait until the last minute and if you see me racing towards a restroom please get out of the way. Of course the restroom in my building is closed for three days so I have a flight of stairs and an extra 50 yards to go to get to the closest one. Fortunately bladder issues come and go so I may have a few weeks or a few months between bouts.
When I am having what I call a flare up, I can also have muscle weakness on my left side. This effects my walking gait a bit and can make me a little wobbly. It also effects my hand strength and my ability to grab and hold on to things with my left hand. During a flare up I also get incredibly tired. I take an herb called MitoQ that helps with that so the flares end up being less intense and not as long but part of that makes me worry it allows me to push too hard.
I won't stop taking it though because my most frustrating unseen symptom is what I call swiss cheese brain. Yeah I'm getting older and yeah some of this supposedly comes with the territory. I guess I disagree... let me give you an example. I had three weeks of no herbs between refills as my MitoQ comes from New Zealand. I was in a meeting at work and my boss had to step out so he handed me the dry erase marker to keep writing down ideas on the white board. I was in the middle of spelling a word and completely lost the last five letters. I had to ask my coworkers for help finishing (yes I am a bad speller, no that isn't was going on here) It seems my brain is often on a five, ten or thirty second delay so patience is important if you are waiting for me to extract something.
I won't stop taking it though because my most frustrating unseen symptom is what I call swiss cheese brain. Yeah I'm getting older and yeah some of this supposedly comes with the territory. I guess I disagree... let me give you an example. I had three weeks of no herbs between refills as my MitoQ comes from New Zealand. I was in a meeting at work and my boss had to step out so he handed me the dry erase marker to keep writing down ideas on the white board. I was in the middle of spelling a word and completely lost the last five letters. I had to ask my coworkers for help finishing (yes I am a bad speller, no that isn't was going on here) It seems my brain is often on a five, ten or thirty second delay so patience is important if you are waiting for me to extract something.
The National MS Society has done some great videos on invisible symptoms so if you have the time and are interested in learning more check out the links below. I just wanted to give you all something to think about today. What you see on the surface doesn't always paint a clear picture of what is real. This is true for people who struggle with MS, cancer, depression or any other illness that doesn't always leave a mark on the surface. Take the time and patience to learn about what is real. As always thanks for reading... now if I could just get the kittens to let me sleep until the alarm goes off that would be super!
Here is a scientist take on MS fatigue I thought was interesting... “Fatigue is something we all have, but lassitude is related to myelin damage itself," Burks says. "The myelin’s job is to insulate the nerves so that messages get through quickly. When the myelin is damaged, the messages don’t get through as quickly. It takes more energy, and the energy that it takes can cause people with MS to get overly tired.”
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