It’s an icky, rainy day, and I’m feeling blah. I had horrible back spasms last night as I picked up Tim from the airport last night.

I’ve been trying some of the exercises we were told about in the Spirituality session at the MS conference, and they help. I’ve been working on a 2-phrase mantra to focus on while I breathe. When I inhale, I tell myself, “Breath is the spirit…” When I exhale, I tell myself, “…healing my soul.” It helps, but I did wonder if I was going to hyperventilate on the way back from the cafeteria.

Another exercise is to help calm the frustration when I feel like criticizing part of my body, or feeling down when certain things don’t work. The suggestion is to think of a body part that is working properly, focus attention on it, and thank it for what it does for the body. I thanked my sense of humor this morning for making me smile even during tough times. It helped a little.

Reacting to MS

It’s interesting the sort of reactions I get when people find out I have MS. Some people look at me like I’m fragile, like they expect me to fall apart in front of them. Others seem incredulous that I’m walking, talking, laughing occasionally, just regularly functioning. Some are curious and ask questions, which I’m always willing to answer.

Some take the negative extreme, that my life is going to become so horrible and difficult. Others are in denial – I’m doing well now, I’ll always do well, and besides, they’re working on a cure, right? This is when it gets tough. On the one hand, people may write me off as hopeless, when in fact I’m still quite vital. But on the other hand, people can be blind to the real aspects of this illness.

For example, I do get the MS fatigue. I can’t explain how it differs to someone who hasn’t experienced it, but trust me, there is a distinct difference between the fatigue of not getting enough sleep and the fatigue brought on by this illness. Tim understands this, because he’s seen how it hits me and can recognize some of the differences. But it gets so frustrating when I talk to other, well-meaning people, who say things like “Oh, you just need to go to bed earlier” or “Sometimes you just feel sluggish because you’re inactive – you should get up and do something.” They don’t understand. And when I try to explain the differences, they don’t listen. I don’t think they really mean to dismiss me. I don’t think they want to admit that this illness does have an impact on my life. They want to still think of me as well.

I wish it were that easy.

Trusting My Body

I was discussing how I felt to someone and told them how it could be related to my MS. Their reply? “You know, Amy, not everything is related to your MS.”

I got mad.

Now, I’m not denying that there isn’t some truth in that statement. I’ve had discussions with my neurologist where I’ve explained how I’ve felt, told him I wasn’t sure whether or not it was MS, and had him smile and reply, “No, Amy, that’s not MS.” I know that there are some things that are completely unrelated, and others that are. I just don’t know how to tell a whole lot of them apart yet.

And that’s scary. You get used to how your body reacts to certain things. For example, Tim gets headaches when a storm front is coming through. I used to feel really comfortable saying what was “normal” for me, vs. what indicated that I was getting sick. Then I found out I had MS.

Suddenly, the playing field changed. When my foot falls asleep, is it just falling asleep, or am I having a psuedo-exacerbation because I’ve overdone it? Do I need to talk to the doctor about the tingling in my hand, or do I just need to let go of the computer mouse for the rest of the evening? And what about this back pain I’ve been having? Is that pain in my eye socket due to sinuses, or am I having another bout of optic neuritis? I don’t know.

I’m starting to get a better idea, though. I know that if I overdo it in the heat, I’ll get extremely tired, and my right lower leg will fall asleep. I also know that sitting somewhere cool and drinking ice water will bring me back around in 15-30 minutes. I know that if my eye socket hurts, but my vision stays the same and the pain goes away the next morning, it was just a sinus headache. I’m starting to learn how to tell what is and isn’t MS. But it’s still new to me, so I still have a lot to learn about myself.

And it’s scary enough not being able to trust your own body, without having someone else remind you.