Judgment – #AtoZChallenge

MS is one of many “invisible” diseases. Because people can’t see what’s wrong with me, and because I look perfectly fine, they figure I’m doing great. And most of the time, I am, thanks to the wonders of pharmaceuticals! But other times, those invisible symptoms leave me thinking that people are judging me. (Lazy. Unreliable. Hypochondriac. Skiver. Unproductive. Antisocial.)

Then again, perhaps I’m projecting. Perhaps I’m the one doing the judging. I definitely think those things about myself when I spend days in bed, when I have no energy, when I have to call in sick to work, yet again. I’m the one putting expectations on myself and beating myself up when I can’t meet them.

There’s definitely a nagging feeling in the back of my mind that I could beat this if I wanted to, if I just worked hard enough. It’s no wonder I expect others  to think that, too.

Infection – #AtoZChallenge

It’s hard to explain to people how infections are related to Multiple Sclerosis, since MS doesn’t technically cause infection. But I’ll give it a try!

Think, for a moment, about sinus infections. Most people can relate to the congestion, the headache, the face pain. But it makes no sense to most people that when I have a sinus infection, I’m liable to have tingling in my foot or an achy leg. How could that possibly be related to my sinuses?!

Well, when anyone’s body gets an infection, their immune system kicks in to fight it. Just like when Pac-Man has to chase down and chomp up the ghosts in the video game, your immune cells seek out infection and attack and remove it, to keep it from harming your body.

Unfortunately, Multiple Sclerosis is a disease where your body misidentifies actual good cells — those that make up the protective myelin sheath that covers all your nerves — for bad cells, and sends your immune cells out to chomp that myelin right off the nerves. The worst part? For a person who has MS, every time the immune response is turned on to attack another infection in the body, it turns on to attack the myelin again, as well. So every infection is a double whammy of the expected symptoms  of that illness and a flare-up of MS symptoms, too.

I’m especially cursed by this phenomenon, because I have damage to the nerves that lead to my bladder. I have trouble realizing that I have to pee, because the signals don’t reliably travel from bladder to brain, and I often have trouble peeing, because the signals don’t reliably travel from brain to bladder. This puts me at great risk of urinary tract infections, which can be caused by residual urine. And every UTI causes a worsening of MS symptoms, so it’s a vicious circle.

It’s frustrating. I don’t want to be a whiner, constantly going, “You don’t understand! Yes, I ‘only’ have a UTI or a cold or an infected paper cut, but it’s worse for me than it would be for you!” But it’s true, and it’s hard to make people understand that when I’m dealing with those things, I’m also getting slammed with extra-bad MS symptoms on top of it all.

(If we were in Notting Hill, I’d be going for that last brownie.)

Fatigue – #AtoZChallenge

This is the perfect day to talk about fatigue! You see, Walk MS was two days ago, and it was awesome. Family, friends, love, support — it’s my favorite day of the year, and I float through it on a wave of adrenaline. But every year, I go home from the Walk and pretty much collapse for days.

Fatigue has been the weirdest and most frustrating symptom of all. Some days, I will be feeling absolutely fabulous– energetic, motivated, happy — and then, after doing maybe one task, I crash. Other days, I wake up and think about getting some food or using the bathroom, but I’d have to lift my head and move the dog over, and I don’t have the energy to do it.

I have days that I basically live in my bed, days that I crash as soon as I get home from work, days that I need to rest after every little thing I do. Then, out of nowhere, I’ll have some great days.

One thing to note is that sleep doesn’t help the fatigue much (I can have a short nap, a long nap, or a good night’s sleep, and still feel lethargic) but lack of sleep definitely makes it worse. Colds, flu, infections, stress and sleep deprivation all seem to kick my immune system into gear, completely exhaust me, and do a number on my left side.

It’s totally manageable, in its own way.  I mean, it’s just hanging around in bed! What’s not to like?! But there’s a stigma to it. You’re lazy. You aren’t making an effort. All these naps are just making you more tired. You are wasting your life. Does anyone really say those things? I doubt it; they are probably all internal. But apparently those are long-held attitudes in my mind, because those voices guilt-trip me about all the time I spend resting.


Fry – This post could also mention the young, whom I love, who are more than willing to just pop over to the house and visit with me in bed, and who have seen me in my pajamas too many times to count. (Love you guys!)