Lesions – #AtoZChallenge

le·sion  /ˈlēZHən/ noun   
1. a region in an organ or tissue that has suffered damage through injury or disease
Stop me if you think that you’ve heard this one before. – Marr/Morrissey

Multiple Sclerosis gets its name from the lesions it causes on the tissue of the central nervous system. Sclerosis means “scarring,” and when the immune system destroys the myelin coating on the nerves, it leaves telltale scars. Multiple scars, if you will.

Now, the majority of people with MS have lesions in the brain. Some also have lesions on the spinal cord. Fewer have spinal cord lesions only. Guess which group I fall into! Yep, my brain is clear; I have lesions on my spinal cord.

Now, the spinal cord is divided into sections (from neck to tailbone, that’s 8 cervical, 12 thoracic, 5 lumbar, 5 sacral, and 1 coccygeal, for those of you keeping score at home), each of which is identified by its section and its number. My spinal cord is damaged at T10 and T11; for reference, T10 is right at the navel.

Why is this important? Well, the area where you have damage/scars/lesions dictates the location of your symptoms, so I could have problems from the waist down, but not from the waist up. I also have symptoms on one side of my body only (the left side! Another L!), which means the damage to the spinal cord is only on one side. Still, it affected both sensory nerves (those that carry information back to the brain) and motor nerves (that bring messages from the brain telling your body to move).

Thus, I have the following: nerves that send too much information about soft touch (making innocuous things like clothing or stepping on the floor feel really really uncomfortable) and not enough about sharp pain (so being pricked with a pin feels like it’s happening through a wetsuit); various areas that are numb; and muscles that don’t work properly and end up making my leg weak or my foot droopy or my bladder unresponsive.

Yet again, I’m afraid this sounds whiny, which isn’t my intention! It’s just meant to be informative, to let people know what MS is like. Believe me, I know how lucky I am.

Super dull Sunday

Oh, the irony.

I totally hit level 4 on the energy scale yesterday. I cleaned house with David. I walked the dog around the block. I hung a shelf in Quinland’s bathroom that I have been meaning to put up for over a dozen years. (It took ten minutes. Why do we do this to ourselves?)

Then I decided to figure out how much of my scrapbook collection I actually need, and how much can just get sold on eBay. This will be a long job, so I told myself I’d start with thirty minutes, and I ended up working on it for an hour.

Then things got fun. We dressed up in our finest hats to go to Franzfest, a celebration I created years ago when my friend Ina was dreading the anniversary of her dad’s death. (He was a gentleman who appreciated fine dining, classy artwork, and jaunty headwear, so we incorporate them whenever possible.) A large group of us had dinner at Gustav’s in his honor, and a good time was had by all.

I’m sure you can guess the punchline: I totally overdid it, and now I’m barely able to get out of bed. (It’s 3:00 pm and the dog just started licking my face as though to revive the body of a stranger he found on the side of the road, so I got up, took my medicine, and gave him some food.)

I’m going to attempt to stay upright and push this day into level 2. There’s a pile of papers on my desk that I need to get to. The dog and I really should take a walk. All that laundry I washed yesterday isn’t going to fold itself. I haven’t been to church yet, but if I can rally, I’ll go to 5:30 Mass with the very few faithful who aren’t watching the Super Bowl.

All I want to do is go right back to bed.

(I saw this at Goodwill but didn’t buy it, because I’m well-stocked already.)

Little MS energy audit

My energy levels are all over the place.

Some days, I feel like I can conquer the world, and I am able to do stuff like crazy. Other days, I wonder if I want to expend the effort to roll over in bed. You know, because I’d have to get the dog to scoot over, and then lift my head up and… ugh, it’s just not worth it. (These days outnumber the energetic ones 10 to 1.)

I know on a cognitive level that this is textbook MS stuff; fatigue is present in more than 90% of multiple sclerosis patients. Web MD defines fatigue as “a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep” and adds that MS fatigue “comes on more easily and suddenly than normal fatigue.” It does not seem to correlate with the type of MS or the number of years one has had it, the severity of nerve damage, or how severe one’s impairment is.

There is no clear-cut understanding of the causation, either. The fatigue might be related to primary disease factors; for instance, since I have damaged nerves to my left leg, the muscles don’t work well and thus tire easily. Researchers also believe this, in turn, puts more stress on the central nervous system, which could cause overall fatigue. Secondary factors related to MS can also contribute. Medications might have an effect on energy levels; the depression that is common in people with chronic disease could contribute as well.

It could be MS fatigue. It probably is. I know this.

But on a minute-by-minute basis, that’s not how it feels. It feels the same way it always has – like I’m not measuring up. Other people get their work done. Other people finish their chores. Other people take care of their homes. Other people are successful, are competent, are not total and complete losers. (I even know how exaggerated these thoughts are… but I still think them.)

I tell myself I shouldn’t be so lazy, that I should get the hell up and live my life.

I tell myself that just because four different drugs for the fatigue haven’t worked or had horrible side effects, that doesn’t mean I’ll never find one that helps.

I tell myself that all the studies say that my fatigue may improve if I eat well, get exercise, take good care of myself, schedule rest periods, reduce stress, practice mindfulness and simplify my life. (Then I laugh hysterically, because all of those things take energy, and if I had any energy, I’d be a lot more inclined to do them.)

Going down to three days a week at work has definitely helped. The main floor of my house is pretty well under control. I’m keeping up with laundry for the most part. I’ve checked some books out of the library and actually read them. I’ve been blogging a bit more. I’ve managed to see some friends. I’ve even been to the gym, though walking on a treadmill at 3 mph doesn’t seem like an amazing triumph.

It’s just worrisome when lying in bed for 18 hours seems like a more appealing option than any of these – or, at any rate, an option I think I can handle – or when it seems that it takes all my effort to live my life halfway when I want to live it to the full.

Edited to add: After writing this, I went to bed for 90 minutes… but then I got up and went to the gym and took the kids to the movies and went to the grocery store. Now I’m going to bed again, but still – I’m proud. 

Hot Water Heater” by Dylan Pankow / CC BY