One would think that with more than half my lifetime spent with multiple sclerosis (MS) front and center, maybe it’s time to focus on something. If I were someone else looking at me, I would definitely wonder if it might be time for me to think about something besides the malady that is MS.
But that’s easier said than done. I have told or convinced myself that everything is hard to do. Which it is. Still, maybe it’s time to reframe my thinking.
I have put two plans in motion: seeing a clinical psychologist and — my last effort to fix my condition — being fitted for a knee-ankle-foot orthotic (KAFO).
The psychologist I will see is someone who helped me through the relapsing-remitting form of MS and the hardship of graduate school. I am hoping the brace will give me some stability and even allow me to take a step or two out of my wheelchair. Most of my friends and family are lauding my two new initiatives.
Things to Talk About in Psychotherapy
Talking to a psychologist has helped me in the past, and I know it will help me again.
With so much to deal with and unpack, a safe space is where I belong. For example, as a coping technique when I had to do my own toileting because no one was home, I engaged in obsessive kinds of self-talk that got me to safely lower myself in the right spot so I would not get stuck, followed by talking myself into standing up with a compromised left leg and a very weak left arm, which often let go.
It would not have been unusual for me to fall, but fortunately that did not happen much. Nonetheless, between obsessive thinking and constant self-bargaining to make what I was doing better, going to the bathroom became traumatic. Consciously, I always felt that there was no need to fuss, because I could do it all. But the psychological toll of uncertainty is real.
What I’ve always had trouble wrapping my head around is how inconsistent MS is, and how if I make a plan, it doesn’t always work! I am a planner by nature, and with MS, nothing ever works according to plan.
One important thing I live with is that I have nothing to look forward to. I just can only do my routine every single day.
My Plan to Try a Knee-Ankle-Foot Orthosis
Between the spasticity, fatigue, weakness, and everything else thrown at me, I could use some outside help with mobility.
The outside help I believe will be the KAFO. I think about my left leg and everything it has endured. I know I am dreaming, but maybe, just maybe, I can take a step or two.
The KAFO is not a new device. It’s like an ankle-foot orthosis, but it extends up to the knee, which can be either locked or unlocked. This brace addresses knee instability; in my case, my knee can buckle without warning, resulting in instant falling.
Technology has only made the brace better by controlling the knee locking and unlocking with Bluetooth and hydraulics.
I have been very excited about being fitted for a KAFO, because I am hoping to use it as a walking tool. However, I recognize all the weakness I have accumulated over the past few years of using a wheelchair. For me to walk even a little, I will have to do some physical therapy.
I Do Have Something to Look Forward to, After All
This orthotic is something I am really looking forward to, especially if I can step out of my wheelchair even for a moment. This brace addresses everything wrong with my leg.
For years I used a functional electrical stimulation device called a WalkAide to help me walk. The device delivers a mild electrical stimulus to muscles in the leg to get them to move better. The problem for me, though, was that my leg was hyperextending (bending too far backward) as I walked and the muscles were getting weaker by the minute. The KAFO prevents knee hyperextension, so that won’t be a problem with the new device.
Between addressing mentally the whole issue of feeling hopeless, unable to do much of anything, and simultaneously make strides (pun intended) with the KAFO, I may be able to walk a few steps and gain a different perspective.
The part about my not looking forward to anything? I am definitely looking forward to my new orthotic. I will report back, but I have a feeling it’s going to work.
