“The Girl With Kaleidoscope Eyes”

I know, those words are used in a Beatles song memorializing the heyday of LSD highs. Yes, I did go to college in the late sixties, and again in the late seventies. No, I did not do drugs during those decades. I did not inject anything until diagnosed with multiple sclerosis in the first decade of the twenty-first century. And even then, I stopped the injections after four and a half years. No, I did not inhale anything, or smoke anything, though now, forty-five years later, I read that I would qualify, with MS, for medicinal Maryjane. I’m not going for that, either.

But yes, I do have Kaleidoscope Eyes this week, and have had them for the past three weeks. I guess I forgot to mention that in the previous post ~ you know, the one where I told you  everything was going well? Well, everything pretty much was going well … I know how to deal with kaleidoscope eyes … close one when I’m trying to sign a check, sit down when I want to read something, and hold Rick’s hand when we’re walking through a store with rows of bright colors and oddly shaped packages. I love walking through a fabric store – usually eye candy for me. But not with kaleidoscope eyes.

It’s a symptom of MS … vertigo, blurred vision, double vision, rolling vision … and there are medications that will help it to pass. I only ask for those when it is completed with nausea, which can dehydrate me in a few days, necessitating a trip to the hospital for meds and hydration. So I have learned to ask for antinausea meds early, if nausea is present. But this time it’s just vision and spinning and walking “like a drunk.” There are T-shirts out there that have a saying printed on them: “I’m not drunk~ I have MS. ”  But why call attention to it???????????????????????????????????????

It’s called a ‘pseudo-exacerbation” which means, basically, a false relapse.  Those are the only relapses I have. It’s is why I don’t own up to the diagnosis of relapsing remitting multiple sclerosis … because it’s fake. The pseudo-exacerbation does not reflect new lesions in the brain … they do not indicate furthering damage of nerve axons, or lessening of myelin (the protective sheath around the nerve axons.) And so when these things come and go, I feel like a fake. But I’m not a fake; pseudo-exacerbations are real. They are limiting. They are dangerous, if not respected. I don’t drive when I’m having “Kaleidoscope Eyes” (you’re welcome.) I don’t shop well when looking at the shelves invites colorful hallucinations. I don’t walk well outside on a good day, and would definitely fall and, thanks to the osteoporosis, break something significant when I’m experiencing vertigo and wonky vision.

By Thursday of last week, when I wrote that positively-framed post of good medical news, the vertigo and wonky vision was fading. We were planning to walk on Saturday, in Natick, for MS Fundraising. But this RRMS, or whatever it really is, is not only a faker, it’s a ‘snarky little divil,’ and pays me back when I start to claim I’m healthy. So what did develop on Friday (just in time for the weekend?) Shingles.

I know Shingles when it arrives uninvited, like pain, at my head. I called my family doc right away, said why I needed to see him, and they fit me in. I came home and started on the acyclovir I take when I have shingles. Saturday morning, when we got up at 6 to get ready to drive to Natick for the walk, the shingles were physically evident. I debated with myself about going, and decided I would go. MS would win this day, shingles would not.

As I said, though, it’s ‘a snarky little divil’ and it took its revenge Saturday night. Rick and I did succeed in walking that five mile walk, though it took us three hours this time, and we were the last to finish the walk (it’s not a race, and we don’t mind being last, as we’re in our sixties, and humble. 🙂 The safety team’s bike rider accompanied us for the last quarter mile, uphill. He offered to call to get us a ride with the safety team’s pick-up van. We said no thanks, and that he could go on if he wanted to. He said no, he was doing his job. I was proud of both of us, and posted our success on Facebook and in an email to others who have walked with us or wished us well.  I didn’t mention the shingles, having already been to the pharmacy and begun its prescription.

Sunday morning, when I woke up, only one eye opened. My fear factor fluttered a bit, for waking without vision is a possibility everyone with MS lives with, day in, day out. But it wasn’t my vision. It was my eyelid, which was swollen to twice its size, and hiding my world from my right eye. I took the morning pills, including the new one for shingles, and went downstairs. By noon time my eye was looking a little better, though still swollen, and the double vision was not evident (since I was seeing with basically one eye.) We decided to take a ride to Portsmouth Fabric Company, where we might be able to get a re placement part for the ‘semi-automatic needle threader’ of my sewing machine. We rode up, looked around, asked for the part, learned that they were out but would order, and then rode home. By the time we were home my eyelid was looking more normal than earlier, and the shingles swelling had moved down to the sides of my eye, both inner and outer.

Rick and I walked slowly into the house, now feeling the muscles rebelling from yesterday’s five mile walk (because we hadn’t stretched first, our bad.) Another flit of fear flew through my mind when I looked into the mirror and saw where the swelling had moved to. I remembered the EEG technician who had told me about her aunt, who’d died of mucosa melanoma in only six months (this was the year I was supposed to go to the dermatologist but didn’t get there.) I wondered if melanoma tumors under the skin could move around like my swelling was. But I reminded myself that it was just the shingles ‘moving through’ as the medication hastens its progress and my healing.

Yes, I still feel a bit sore and am limping, leaning to one side, and my hip bone is achy. But it’s not creaking, and it’s working. My vision, now that both eyes are open again, is a little bit blurred but I can sit here and type. Vertigo and Shingles and MS and Osteoporosis and Melanoma and Depression are no match for me … I made it through college in the sixties without doing drugs, and now that I’m in my own sixties with meds, I can make it… sort of. Because Rick is with me, and I have my dad’s cane, and Rick has his croquet-mallet cane, and we can hold hands … and I know I can fly, if I want to.

The Girl with Kaleidoscope Eyes (Lucy in the Sky with Diamonds, by the Beatles)

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  1. I admire you Terri. I think you are awesome! I was a doctor, MD .. in my other life. Retired in 2/22/13. I think I know what you are going through. By your writings, I can tell that I don’t need to say “keep the faith” because you already are. Be strong! Fight the fight!! My thoughts & best wishes are sent your way!!

    • thank you, Dr. Rex. It is a fight that my husband and I fight together. I thank God (and the Blessed Mother Mary) each day for this man.

      • Light and bright energy sent your way. Call me Horty …. I wish you the best of health & support!!! 🙂

  2. I was lucky enough to have shingles on my chest and back. I’d hate to have them on the face where I theoretically could have scratched. I’m glad to read you are feeling a bit better. MS isn’t allowed to win.

    • I’m very fortunate in that the nerve pain with this form of shingles is minimal compared to those who suffer it on their torso, for longer periods of time. No, MS is not allowed to win, in whichever form it decides to descend upon us. We fight. And we win.

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