Today started out tough. I had to use the bathroom in the middle of the night, and my legs were not cooperating. I managed to get in there without falling, but I was glad that I’ve been wearing a Poise pad to bed so that I don’t have to worry about bladder urgency issues. I was concerned about trying to climb back in bed, so I headed out to the couch. My legs were so stiff and uncooperative that I decided not to go to work before my physical therapy.
I did NOT want to go to PT. Then I realized how silly that sounded. The whole reason I need to go to physical therapy is because I am finding basic functions like walking to be a challenge. If I wasn’t having trouble, then I wouldn’t need to go to therapy. During the appointment, I told my therapist that I was doing backflips in my head because I was thrilled how well I was doing during the meeting. I felt it afterwards!
We also realized at PT today that my walking is worse than it was and that the foot-up has outlived its usefulness for addressing my foot drop issues. So now it’s time to move on to the next tool in the tool chest, the AFO (ankle-foot orthosis). I’m going to be fitted for a brace to address the weakness in my ankle and help me more with the foot drop. The therapist had worked with me during my last round of PT and wanted to try and keep me from developing bad walking habits. I told her I’m already showing trends to one of them, where I swing my leg to the side instead of bending the knee and walking properly. So we’re thinking it would be a good thing to get more aggressive in dealing with my foot drop before I’ve ingrained those bad habits and can more easily retrain myself to walk correctly.
It was also the first day of my IV solumedrol infusion. Yes, I take performance enhancing steroids. It’s one of the favorite parts of my therapy, and no, I’m not being sarcastic. The worst part of the whole thing is getting an IV, and I’ve had enough needles that I’m not bothered by that. Yes, the steroids can leave a metallic taste in my mouth, but I can eat the Lemonheads candy I like to keep that taste out of my mouth. And my appointments are at a time that will likely prevent me from getting a heated massage chair to sit in during the treatments. But other than that, it’s not bad at all. I get to relax in a recliner for an hour without hearing kids saying, “Mommy, Mommy, Mommy” or asking me every two minutes to get up and get them something. The nurses are great, and there are normally some pleasant people getting infusions who offer pleasant conversation. Today was terrific – the other women in the room were funny, chatty, and made the time pass quickly. Sheila made a point of finding out everyone’s name and made a friendly comment to everyone else in the room to make them feel included (even if they napped through most of the chatter!). The nurses enjoyed the group too – they told us that the morning group had been quiet, and they enjoyed a lively bunch like us. After the infusion, I felt so much better, and there’s already a noticeable improvement in my walking.
Tomorrow’s a calmer day – I only have an IV appointment. The next PT is on Thursday. I want to make sure I get my home exercises in tomorrow, since that will help me get stronger. The one thing we all agreed on during our infusion chatter was that rolling over and letting multiple sclerosis win was not the choice for us. Maria is in her fifties and loaded with energy. When she started water aerobics, she could barely handle 5 minutes, and now she does well over an hour at a time. I did water aerobics in my 20s, before I was diagnosed with MS, and I was worn out after an hour, so I am so impressed by Maria’s exercise regimen. Sheila talked about how she walks around her house without any aids and makes sure she regularly uses the stairs, since she knows that giving up on doing stairs would make it harder to use the stairs in the future.
They reminded me of the comment I made to my husband Tim early in our marriage – he signed up for better or worse, but he did not sign up for me rolling over and giving up. Even if I were tempted to give in, I could not subject him to a life like that and had to fight for him. And now that I have two adorable sons, I want to do as much as I can with them. I may not be able to run, but I can still do so much with them. I’m not the best field trip chaperone, but I did a terrific job reading to my older son and some of his classmates when we had a surprise reading event for the kids earlier in the year.
My younger son made the cutest invitation for his class Mother’s Day lunch, and I will not miss that. I’m just wondering if this will be the third year in a row that my kids make me look good at the Mother’s Day party. Last year, Dylan told his classmates that he likes playing on the Wii Balance Board with me, so the other moms thinks I’m an avid exerciser. The year before, Jason’s card said that I’m prettiest when I smile, prompting the other moms to say, “Awwww”. My boys remind me that they don’t care that I have MS, they love what I can do for them and don’t get too caught up in my limitations.
