t’s a slightly dreary Sunday, rainy. We usually sleep till around 7:30 a.am. Tom got up at 6 to go to the bathroom, triggering the same in me. I tried to getup but couldn’t sit up. I need to pull myself sometimes with sheets. I asked Tom to give me a push up. No problem. Then when I tried to get out of bed instead of standing, I slid gracefully to the floor. This is usually not a problem. I stand up like a toddler. I grabbed the edge of the bed. Not happening. Tom wanted to help. Sometimes, when I need to get out of the tub at night, he has to come in and help me bend my right leg so I can stand up. “I need you to do the same thing as you do in the bath.” He comes over, pulls my leg up and as soon as I try to pull the other one, the right collapses down. We do it again and this time it jumps uncontrollably and collapses again. One more time and the leg is jumping up and down even worse. The first time this happened was in my neurologist office. I swore at the time it was something he had done to me. It happens periodically when I get dressed in the morning. I usually just put my hand on it and stop it. Tom says, “Isn’t this why you take the Baclufen?” No, that’s for the spastic thing I do where my body tenses up and I walk like a Zombie. It’s been happening more the last few days. Nerves, I thought. So, Tom pulls my right leg up again and it’s out of control and he has to press it to stop it. Think of a tuning fork.
He has to walk me to the bathroom. It’s only 10 -12 feet. My issue becomes that sometimes in the morning I have problems getting up in the bathroom. I don’t want another set of grab bars. It’s insidious defeat. Every once in a while which is mortifying I have to ask Tom for help. This morning we anticipate the worst.
Now, I have to call out to my fellow blogger BBH with MS ’cause she discusses bathroom issues frankly. Let me describe my situation this way: It’s like I can turn on the faucet and most times I can turn it off but sometimes I can’t tell if the tank is empty. It pours out of me, that I feel, and then it just keeps on dribbling and dribbling. Mind you when this started this morning, I was in a cozy sleep. We had just changed the sheets to the high thread count Egyptian cotton. It’s like sleeping in a lovely cocoon. Well, that’s done. Luckily, I can stand up by myself in the bathroom. Tom helps me get back into bed. My right leg feels totally numb. And this is the moment he decides to be amorous! Are all men adolescent boys? The only thing I want is to get feeling back in my leg and salvage some sleep.
Which brings me to reflection which may have brought on this whole spell. Yesterday, I opened Facebook and it let me know I had a memory. Did we remember before Facebook? I had posted a picture of Jeremy’s college graduation picture with us five years ago.
So, a couple of things: I am relatively tiny in this picture. I always think of myself as tall and huge. The next thing that hit me is that this was on a grass field. We returned early from our vacation to attend. I had walked on the beach and felt normal. It was a glorious moment. Yes, it took me a bit longer to reach our seats on the grass at the graduation but I was walking without a cane and without the spectral leg. Again, the deterioration has been insidious. I am told I really haven’t deteriorated. REALLY? Ok, so I am grateful that I still can get around but this is so far from alright. It is not alright!!! Back to fighting and clawing back, one step at a time.