“The kind of beauty I want most is the hard-to-get kind that comes from within - strength, courage, dignity.” ~ Rudy Dee
When I was first diagnosed with multiple sclerosis, I was filled with so much hope for about two years. Then flare-ups emerged and I began to feel as if something was off. My faith slowly started to fade. As my symptoms got worse, my confidence and bravado was being slowly stripped from me.
I've always been a strong person but MS has made me feel weaker than most and after a major exacerbation and years of worsening symptoms, one of my biggest challenges now is trying to maintain my dignity.
At the present time I need help with almost everything. When I go to the bathroom in the middle of the night, my husband wakes up to make sure I am all right. He has to help me hook up and empty my catheter. Sometimes it’s two to three times a day. It is very hard to keep your dignity when you have to ask someone to help you do that.
I realized that retaining dignity requires time and is experienced only in a context of empathy and mutual confidence. I have been lucky; most of my friends and family are very empathetic and still display confidence in my abilities. My problem is I need to work on strengthening my confidence in myself.
I once was able to pinpoint exactly where MS was residing in my body. I knew my weak point was fatigue in my legs.
Nowadays MS is effecting every essential part of my being including my psyche. This seems to play a major part in my lack of confidence. I can no longer predict where MS will affect me. I may go blind in my right eye for a few hours or start feeling sorry for myself and not want to leave my room. I might fall to the floor as my legs give out or not be able to get out of bed because I’m to tired.
How does one prepare for that?
This disease has become such a mind game it makes me crazy. The constant uncertainty is becoming insufferable.
Someone posed the thought of surrendering to this new normal of mine. This state includes no walking, occasional confusion, memory lapses, weakness, and infinite fatigue. It seems like a lot, but quite frankly, I thought I had already surrendered.
To me this falls into the realm of acceptance, adaption, and accommodation. All things I have already checked off my “to do” list. Okay, I have my moments. I do recognize I am a work in progress. I now realize that I have put myself in harm’s way for the sake of doing it on my own terms. But surrendering to this state takes things to a different level.
I confess I do carry a rather large chip on my shoulder. Everybody can’t see it, but it’s definitely there. It’s mostly in my mindset. I guess it would be freeing to let go of that. Like dropping dead weight.
For me, surrendering does not mean I’m being stagnant. It doesn’t mean I would stop taking my medicine or therapy.
It does mean I accept what is, while at the same time maintaining my dignity.
Do you celebrate your MS Anniversary?