Water on the Brain (Just keep swimming)

Sorry for the long break between posts. I was hoping for something new to say. It has been a roller coaster couple of weeks. Up & down as far as how I've been feeling. I started a bad flare-up, or "relapse", last Saturday, September 12th. It didn't start til that night, so that was good. (I was on a date with Dave celebrating our 12 year wedding anniversary!)

We had gone to dinner and to Barnes & Noble in Rochester Hills. I know it sounds kinda boring, but we used to do that all the time when we were dating. We would split up and browse around. Then we would find each other and talk about things we found. Split up again and meet in the cafe for dessert and coffee and decide what to buy. It was so relaxed and enjoyable. You sure don't get that with kids around. We even had some full conversations without anyone saying "Mama" or "Daddy". We had a really nice evening. Sometime while we were walking separately, I began to feel unsteady and tired. I didn't want to leave. I wanted my time with Dave. So I pushed myself more. Than I "hit my wall". I had to stop. But I couldn't find Dave. I finally located him and he met me in the cafe. Sitting helped and we had a drink. I had my favorite, caramel apple cider. (So yummy...mmmm.) We decided to head home and I would finish my drink on the way home.

I could really feel the fatigue. But I still wanted to talk with Dave, so we did. When we got home, we were sitting in the car and talking for a couple minutes. All of a sudden, my hand jerks and my cup goes flying up in the air and tumbles between us. Thank God, it wasn't hot anymore and it was almost empty. But so embarrassing. That happened once before with my sister Shannon. We were at Shelly's bachelorette night and we were talking. I was holding a plate of appetizers when all of a sudden my hands jerks and the plate goes flying. Embarrassed then too. What can you do?

So that is how this flare up started. I was shaky the next day and as the week has gone on the fatigue has returned. I had my shot on Thursday and Friday was a really bad day. I have been having a bad reaction the last few weeks the day after my shot. I wake up in horrible pain and violent chills. They say this is common. "Flu-like symptoms". This isn't like any flu I've ever experienced. I have read on an MS forum that other people have had this extreme reaction like I did, but that it does pass. I am trying to find my patience. I take my Darvocet at bedtime and as soon as I get up. It takes some of the edge off, but it still is uncomfortable.

I saw Dr. Beall on Thursday, September 17th. He wants me to try the powder shots you have to mix yourself, instead of the pre-filled syringes I've been using. He says these are sometimes tolerated better by patients. If there isn't a change by my next appointment in November then he would like to try Betaseron. He feels the shots are helping me. And at the beginning I felt it was, but I'm not as sure now. He hasn't detected any weakness at my appointments since I started the Avonex. I detect it, but he doesn't. This can be frustrating too. I feel bad, but he says "normal." I asked him how he can find no weakness, but I can feel very weak. He says it can happen. When he sees me, it may not be showing at the time. But he could see me an hour later or the next day and have a different evaluation.

All I know is how I feel and lately, I am trying to keep my head above water. Like Dory from "Finding Nemo", I love to say..."Just keep swimming. Just keep swimming. What do we do? We swim."

To Cane or Not to Cane?

So the decision to use a cane was one that I thought about for a while. After reading how some people with MS had actually fared better with it, I decided to try it. From what I had read, many people found they exerted less energy when they opted to use a cane than when they walked solo. I figured I can use all the energy I can get. So I purchased my pretty, green cane.

Now the stares and the judgements begin. Am I "milking it" or "looking for attention"? I can't be "that bad", right? My decision is a daily one, one that I typically make as I walk out the door. "How do I feel right now?" "Will I being doing something that will wear me out while I am gone?" "Have I already done too much and about to "hit a wall"?" "Will there be a lot of walking?" Or "will I be far from my car?" "How is my balance today?" "Or my weakness?" "My energy?" These all come into play.

Sometimes, I run out the door without my cane and as soon as I get out of the car and start walking, I regret my decision. "I should have brought it." Now, I begin the dance of "Don't fall. Don't fall." Place my hands out and try not to stumble. Pray I don't make a fool of myself. When I left, I thought I was doing well, but sometimes moving around the house doesn't effect me as much as walking from my car to the entrance at Walgreens.

Many times I get somewhere and realise, "Great! I don't need this today." So it sits in a corner or with my purse. That is when the real stares begin. "See! She doesn't need it." "It's just for attention." I find this more from men than women, but the judgements can come from anywhere. It can make me feel guilty for having a "good day/hour".

I saw Montel Williams on Oprah this week talking about his experience with MS. He said, "everyone's experience with MS is different. Some people have balance problems. I don't. But I experience more pain. Others don't. " This is the big mystery with MS. You never know how you will feel or how your body will react. And every person is different. Today I am trembling alot. I look like I'm going through some drug withdrawal. Tomorrow that may be gone and I may trip more. Yesterday, I experienced the worst pain I have ever felt with this. I told my sister, It was neck and neck with the intensity of my labor pains. That is saying something. I kept thinking, at least after labor, I have a baby!

So, I try and ignore what others are thinking. I try and make lite of it because I know the truth. They don't truly understand. I don't really need any attention. I don't even need sympathy. I would just like some compassion and to be given the benefit of the doubt. I am doing the best I "cane". So today..."To Cane or Not to Cane?" That is the daily question.