Sunday, June 26, 2005

Cluster Headaches

A phantom jabs the hot corkscrew into my eye and ever so viciously twists. I could be sleeping, or walking, or driving it doesn’t matter. The attack is always without warning and usually debilitating.


Over 20 minutes to an hour the blitz builds to pain levels where if there is a god I loose consciousness, mostly there is no god just writhing pain.


In the calm that follows the ebb of an attack I clutch together the pieces of my sanity.


Such is a day in my life with Cluster Headaches. The next mugging could be in minutes or the next hour or the next day or the next week. During the worst of episodes I’ll get a handful of attacks in a day. Until recently I was blessed with 15 months of freedom from Cluster Headaches. For whatever reason the gates of hell have reopened over the last week.


My Cluster Headaches and Patti’s MS have a shared historical timetable. Perhaps the mega-stress related aspects of caregiving may have played some trigger aspect? Medical science offers no answers. Everything except the proverbial kitchen sink has been thrown at the Cluster Headaches.


All that really can be done is to pick myself back up following each attack. Some days it feels like from the brink of madness. And in all honesty sometimes I move forward with a touch of shell shocked apprehension in my step.


(Picture copied from and link to Bob Pahlow's Cluster Headache Picture Page.)



     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era.              


Saturday, June 18, 2005

Jubilee Day 2005

Living with MS as family requires creativity. If you wake up and discover that nature has turned a June day into an April morning - try to seize the moment.


Our town hosts what is billed as the largest one-day street fair in the eastern part of the United States. The media estimated as many as 60,000 people attend Jubilee Day® annually.


With temperatures in the low 70’s, no humidity and a beautiful steady breeze the weather was a “Spring” morning instead of the traditional June hot and humid 90+ degree day. For the first time ever we could actually try to take Patti to this local lollapalooza.


As an omen, we even found an accessible parking space one block from the street fair upon arriving.


Patti is not a morning person but quickly tuned into everything going on around her rather than become overwhelmed. Street vendors add an element of fun to shopping long ago lost in malls and stores. And there is nothing that can rival the blocks and blocks of smells of food of every imaginable type cooking and mixing in the morning breeze.


Entertainment is abundant but not as appealing to Patti’s MS affected attention span. The “next” booth or the “next” block was more interesting to her to want to explore.


By visiting at the opening the crowds were not at their peak and being in a wheelchair did not leave her lost in a forest of walking people. It was pleasantly crowded.


Patti’s mood built to a peak and then the reality of MS began to take its toll as she slowly faded. This was anticipated and after grazing through a street food lunch of a little of this and some of that we departed.


All in all (and with the help of Megan and myself) she partied in the streets for 3 hrs on a magnificent Spring morning in June and then was eager for one of her favorite activities, an afternoon nap. <grin> It was fun for us all and particularly nice to put another notch in the success column.

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