Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Thursday, May 31, 2012


Last night I tried a new sleep position, or maybe sleep prep. I got in bed and straightened my body and my legs started to feel like thy were going into full spasm mode. I pulled them up into almost a fetal position, difficult for me because I need to use my hands to encourage my right leg, especially when I’m lying down. Then I arched my back backwards and slowly moved my legs straight. No spasms. In fact, it felt good!

I know from when I use the walker that every now and then I have to stop and straighten up, arch my back a little to stretch it. It actually gives me a few more steps that I have the power in my right leg to fight the foot drop. The messed up disks in my back actually do like stretching. My favorite of my therapy exercises are the ones that stretch my back backwards. It makes sense that stretching that way would feel good for sleeping. In fact, back arched and legs straight is how I fell asleep, faster and with less position changing than usual for me. I woke up this morning with a lot less pain than most mornings and it seemed like a touch more stability.

I’m not ready to run a marathon or even go down the stairs on my feet, but it was nice to wake up feeling a little stronger. I know MS is different for everyone; custom diseases make us feel so special, don’t they? But I do want to encourage everyone who is living with symptoms to never give up trying new things to make the symptoms a little more manageable. MS isn’t going away anytime soon, so embrace the disease, it’s yours, and make it easier to live with, one little coping idea at a time.

Wednesday, May 23, 2012

Crisis Mode Kicks In

It is NEVER funny when someone falls! The last time I wrote something about falling in a forum, people actually replied that they thought the story was funny. How is something where someone can get really hurt ever funny? I just don’t get that.

One fear that always in the back of my mind is what happens if I slip in the shower. Years ago my mom did that when she was visiting Grandma and my dad had to go pick her up, bringing someone to drive her car home because she’d dislocated her shoulder. The thought of being naked and wet and having to have emergency people get me out of the tub and take me to the hospital is mortifying. Yesterday I got to find out what I’d do.

The most dangerous parts of flying an airplane are taking off and landing. Basically the same is true for showering if you can’t really walk at all without assistance; getting in and out of the shower are the most dangerous times.

Yesterday I was feeling full of energy and although my right leg has been especially weak at times for a few days, I have a shower chair, so I’m not standing in the shower, I took a late afternoon shower/hair color break. The hair color was my ultimate undoing. In think the extra 15 minutes of sitting on the shower chair made it stiffer when I got up after finishing the shower.

I followed my careful procedure for getting out of the tub, using the wall-mounted soap dish for balance and the wall for support, using one hand to move the shower chair to the outside of the tub so I could move to the back wall to grab the cemented-in bases of the towel bars while I climb out, good leg first pulling the bad leg over when I’m on solid dry ground. Only yesterday, when I stood up and carefully moved the chair to the outside of the tub, I felt my right leg starting to buckle. I grabbed the soap dish and tried to tense up my leg muscles to keep me from falling. I almost regained balance and rose up too, but then I started slowly folding to the ground again. When I was close enough to not get hurt, I let go. Of course that’s the detail my brain recalled as I slumped down in slow motion. It probably happened faster.

There I was; not hurt, but wet and naked sitting in the tub. I tried to get my feet flat so I could move a little; sit up straighter and decide what I needed to do. Since the bathtub was still wet too, my feet slipped on the wet surface and I realized the first thing I needed to do was dry the tub and me.

Good tips time! When I shower, it’s usually after my husband leaves for work, so I’m home alone. Part of shower prep for me is to make sure I have towels on the towel bar so I can reach them after I sit back down on the shower chair I move to next to the bathtub, my cane next to the towels on the bar so I can grab it if I need it and my phone on the counter in case of emergency. It’s good to be prepared for the things you never want to happen.

I managed after a couple of minutes to regroup, to stretch enough to grab my cane and use the cane to pull down the towels. Two towels in the tub dried me off, except my hair, and the bottom of the tub except what was under me. I had to do some moving and resting in between moving to get that taken care of. Once the side of the tub was dry enough to safely do so, I used the handle end of the cane to drag the phone down and over to me. I said it was a late afternoon shower and I wasn’t hurt, just too week to stand up. so instead of a 911 call, I called my husband at work. He was due to be off work in an hour and I just wanted to let him know that I may very well still be sitting in the tub when he gets home.

Using the towels and taking frequent breaks in between little bits of movement, I managed to get myself up on my feet and out of the tub – 40 minutes after I fell. I texted my husband to let him know I was texting from the bedroom where I wrapped up in a blanket with three pillows supporting my back and read for another half hour before I got dressed and went back downstairs.

As a result of yesterday I realize that I really need real live grab bars in the shower that I can grab with both hands and use instead of the wet tiled wall to support myself. Also, perhaps an extension of the chair or a new chair that can extend outside of the tub too so I don’t have to step over. Maybe if I’m coloring my hair, I should get up and stretch my legs a little while the color is setting instead of remaining sitting in the tub is a good idea too.

But I learned that my “crisis mode” brain still kicks in. Boy the temptation to break into hysterical defeated tears was there at first, but I pushed it away to work on a solution, like I have all my life. So, take that, MS! Even with the bad legs, I’m still me and I’d still last for a while in the event of a zombie apocalypse. I have sound survival instincts…and a grave fear of being rescued wet and naked. I have a few bruises that have shown up today, but I’m okay; and my hair color looks great!