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.

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.

BONUS!

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!)

Candidness – #AtoZChallenge

Here’s the thing about me: I’m constitutionally incapable of not sharing my own personal information. I don’t know why, but I’m compelled to tell you all about everything. The catchphrase is, “With Lori, there’s no mystery.”

So, while I know that there are plenty of people with plenty of excellent reasons not to talk about living with MS, I am not those people. My family knows; my friends know; my boss knows; and I bring it up with random strangers (if we already have a reason to be chatting; I’m not that random).

Having MS is just part of who I am now, and I talk about it that way. I know that I’m lucky to not have any repercussions at work. I’m lucky to have friends that understand when I vanish for periods of time. I’m lucky that I can be candid about my health in so many ways, so I’m never critical of anyone who chooses to use more discretion. I just wish the situation were such that no one felt they had to be silent.