MS Strength

The relapse I had in the spring of 2006 was my second debilitating experience. The double vision episode the year before was my first journey into the belly of the beast that is MS. In June of 2006, after changing medical treatment and finding a caring, aggressive neurologist, I had my first steroid therapy. During this time I was experiencing bad vertigo, “buzzing” that made my whole head feel like it was vibrating, swallowing difficulties, the MS “hug” or severe tightening around my upper torso, exhaustion, and left leg weakness that made me walk like a duck. I had a bladder infection— common for MSers with bladder problems— and towards the end of the attack, facial numbness. I was a wreck.

The first steroid experience was a bit unsettling. I didn’t know what to expect. My nerves were shot to begin with, since I didn’t know how long the attack would last. The steroids made me so sleepless and miserable. I would lie awake and hope for sleep. I tried Ambien CR and Lunesta, but they lost their effectiveness after a night or two. Finally, my neurologist prescribed Klonopin, a multi-use medication. This was fantastic. It knocked me out and kept me asleep. I wish I had known about it when I first started the steroids.

I finally emerged from the 2006 attack in July. I started talking to a social worker who helped me sort out all of my emotions. This helped (and still helps) me tremendously. Many of my symptoms went into remission and I was able to cut my medication list down to two things. I took Betaseron injections for the multiple sclerosis and I believe they really helped me. From that 2006 attack until my recent 2008 attack, I had been in pretty good shape physically. I was careful not to overdo it, until the spring of 2008.

I began to work outside of the home, again at a local library. I was so happy to be out, but I did work that was way too physically demanding, and the temperature of the library was usually quite warm. This job lasted for about 4 months, until I couldn’t deny that I was having another relapse. Again I was forced to stop working. I have to say that this relapse was a little less frightening than the last time, probably because the Betaseron had “watered down” the attack. Most of my previous symptoms came back, especially the weak limbs and the exhaustion. But they were less intense. I also was armed with coping techniques that I didn’t have in 2006. All in all, the MS attack of 2008 was a little less disturbing.

I am now, again, emerging from the attack, and this time some of my symptoms have not gone away. I believe I am more tired and tingly than before, and my left leg still feels, at times, like a lead pipe. I suppose I have to renegotiate my path and tread forward, but I am better equipped today than I was 2 years ago.

I just came back from a much-needed, long weekend trip to Sea Isle City and Atlantic City, NJ. We had a family gathering at the shore with my mom’s relatives and saw some people we haven’t seen in a couple of years. Lots of fun and an appreciated change of scenery.

Both my family and I benefited from this visit. I learned from them that I need to push myself a little bit to get up earlier and do a little bit more (I have gotten slightly apathetic about going out or making a schedule this summer, probably because of the heat and the recent relapse.) Sometimes I have a problem deciding what I’m up for and what’s too much. Then I end up doing nothing. This kick in the butt has energized me and made me realize I just need to slow down but I don’t have to completely stop: people are becoming understanding of my limitations.

My family, in turn, has realized that I cannot do everything and run around wearing myself out like a crazy person. After getting up early and going with the flow for 2 days, I got up yesterday (after a Betaseron shot night) and was sluggish as we went to Atlantic City to gamble. My mom kept walking too fast, trying to squeeze in too much, and I reminded her that I am still slow and cannot walk all over creation. She’s starting to get it. Today we went to breakfast, then relaxed on the balcony of our rental and just enjoyed being. I didn’t overdo it and was able to make the drive home without collapsing at the wheel.

It’s hard to adjust to an ever-changing level of disability. With MS, it’s hard to tell what is transient and what is permanent. I am retraining myself to go forward and try to do things, but rest if I need to. My loved ones are starting to understand that although I used to be able to rebound pretty well from relapses, this might not always be the case, and to allow me my limitations and slower pace. My multiple sclerosis can set the pace for everyone and maybe help us all reserve our energy and not foolishly squander it. Maybe.

I want to add that if you seek the counsel of a disability lawyer, they should not charge you unless they win your case. Then they will charge you a predetermined fee or a percentage of your SSDI lump-sum back pay, usually the lesser of the two. Thankfully, this makes hiring a disability lawyer affordable. I would never have been able to hire one otherwise. The end result is much-needed financial relief and a little more peace of mind, so the investment is well worth it.