How am I? Ask the Octopus

The day to day reality of multiple sclerosis can be just about impossible to explain. If, 10 years ago, I was paralyzed in a diving accident by now I would know with certainty what my body could do. If, 10 years ago, I had cancer by now I would either be a fond memory or joyously cancer free.

Having MS is a little like trying to keep a live octopus inside of a plastic grocery bag. Every time you slide one part back under wraps, another part sneaks out. And, somehow you have to find a way to live with this unwieldy, unpredictable, and rather inexplicable creature.

Symptoms and abilities change from moment to moment. If, for example, this morning my right hand seems strong enough to hold the coffee cup—should I still use a drinking straw? Will the first, fourth, or ninth sip be the one where my fingers give way and the coffee splashes across my lap? Friends stop by and I chat and laugh and seem to be my normal self. Should I tell them that my right eye has developed a disturbing blurriness and I can barely breathe for fear of going blind? Did they know that my pain is off the chart and, with my cognitive challenges, I have trouble following the conversation?

I yearn to be normal. The ever changing landscape of my MS and how it manifests in my body makes ‘normal’ indefinable. About three years ago I developed a chronic cough and shortness of breath (not your run of the mill-top of the 100 most common MS symptoms list). A pulmonologist ruled out asthma, allergies, and a host of other things and finally said I have laryngeal spasm. This is a paralysis of my vocal chords—he then blithely mentioned that at any time my throat could close up and I wouldn’t be able to breathe. Also, that I would intermittently experience trouble swallowing and needed to guard against choking. No treatment, no predictable course, just more MS uncertainty. Thank you and have a nice day. At random moments his words echo around in my head—wondering if this is the meal where I will choke, is this the cough that indicates the worst is here. And this symptom is just one of countless in my body.

So, how do I know what to say when I am asked, “How are you doing.” I don’t have an answer. I wonder, compared to what or when exactly—10 years ago or last week or the past five minutes. And I haven’t even addressed that I don’t know with any kind of assurance what the next five minutes, week, or a 10 years will hold.

The one thing that sustains me is the unchanging presence of God in my life. The one way I can quiet the fear and uncertainty is to dip my feet in the river of His presence that runs through my life. At the top of this blog I have a scripture quote that says, “He does not take pleasure in the legs of man” as a reminder that I am not defined by my physical body.

So I will continue to wrestle with keeping the octopus in the bag. How am I? Hanging on with my finger and toe nails. So for today, that is enough.

Happy Happy Joy Joy

Finally! Help for MS Head Pain

For over a month I have had steadily worsening, nothing short of hideous pain on the right side of my head.
Yesterday, after a desperate trip to my pain doctor, I finally had a diagnosis and a 'fix' that worked!
I have Occipital Neuralgia (description) and there is actually a treatment for it. The doc gave me a whopping big shot of cortizone in the area of this nerve (back of my head) and over the past 24 hours my severe pain is slowly subsiding. In terms of the old pain scale my numbers have gone from a continuous 7-8 with stabbing off the scale electrical shocks to about a 4-5 this morning. And, no electrical shocks since I had the shot.
Who would have thought how good it feels to be back to a manageable level of pain! {I am using lots of exclamation points this morning and feel that I have earned every one!} As the muscular tension eases my back, neck and shoulders are popping. I actually feel up to doing a few things--like walking my dog (maybe) or watching a movie or updating my blog.
There is an 80s song, by Madonna of all people, with the lyrics, "I made it through the wilderness, yeah I made it through." I think I will claim this as my phrase of the day.
The doc said that this shot isn't a permanent fix and I may have to go back periodically when symptoms reoccur. Just the fact that I am more than willing to have a large needle inserted into my scalp is a pretty good indicator of how much pain this condition causes.
With progressive MS I have steeled myself to not expect restorative treatments. More in the realm of palliative care that helps me deal with the day to day. I happily embrace this 'first' and at the same time am wary of the small ray of hope I feel. After nine years of steadily worsening symptoms I am dubious of this success. But, on this sunny morning with my pain at a manageable level--I am just going to enjoy it!!!!!!!!!