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So did I have a seizure? Oy ve! CPS is constantly creating new problems

I was watching visuals by a product named G-Force while listening to Bach’s Toccatas as recorded by Glenn Gould, and trying to seriously zone-out,  I have been feeling so extremely stressed and worried about our finances, Jake’s future, and my health – I worry a lot about Jack’s, as well I cannot really do very much to fix anything financially. Yet I can devote an hour or two, or even three, spread out over the day. What company would hire me, with a time schedule like that? I could apply for Social Security, but that won’t help us now.

Anyway,, the problem is that stress is the number one trigger of both high blood pressure, and pain. The past two or three days have been agony for me, and I haven NOT been able to relax my muscles, which are always clenched on   the left side to begin with.So my BP has been scary-high – 202/144. It truly effects my vision, as well. So I tried some stress reduction techniques, and decided to see what Bach would look like on the visualizer program. Now the visualizer program looks like some kind of Grandson of Joshua/Liquid/Laser Light show that would been shown at raves, concert and in planetariums. It using light designs shown on your computer screen. IT probably was made for adolescent boys and heavy metal guys, with a name like “G-Force.

I’ve been using it as a de-stressing tool, an electronic mandala. It is both symmetrical and variate. Starting from a center point, bands of constantly shifting points, lines swirls, twirl, waves, spikes, and even daisies feathered together, all constantly changing in color, moving out to the edges, several layers against an abstract or natural background – well, it can be trippy. I listen to the Chemical Brothers since I purchased it, and they made pleasant, psychedelic images.

But today I wanted to bring my blood pressure down quickly, so I took a clonidine, had a sip of gin – literally – and watched the patterns that this visualizer produced by Bach’s Toccatas, as played by Glenn Gould (you can hear him humming at times). The images were of such symmetrical and swirling beauty that they were celestial, almost sanctified. To see Bach turned into light and motion! I was transfixed. I listened and watched all of them up to the sixth of seven, and felt happy that muscles shoulder muscles began to relax, when I head a question from the kitchen: “Why is there a smell of burnt toast in here?”

Suddenly I began to wonder “Why was there a smell of burnt toast in there? Had something been burned in the toaster? Was the oven on? Was something burning in the basement? Outside? In the walls? Our house is 95 years old, after all and we draw tons more electricity than folks did in 1915. The placement of some odd things. such as an outlet way up high on one wall (for a kitchen clock), or the telephone box at the landing on the stairs, where the one telephone of the house was located (what woe for the housewife called from laundry in the basement to the second floor landing!) are reminders. I began to worry about electrical fires, about what we would possibly do if our house was damaged in a fire? The insurance company paid us the paltry sum for the damage to the roof last October, after the tree-third hit the den. It was was only 1/3 to 1/4 of the best prices we were quoted for repairs. I began piling more and more possible catastrophes juggernauting towards us, I went on and on like this, and couldn’t stop thinking more and more fatalistically, and staring at the screen while Bach played…..and my heart began to pound. Really fast, and really loud. It hurt. And I got real scared.

I called Jack and asked him to take my blood pressure, but by now my body was jerking a bit and I couldn’t stay still to get a goo d reading,. He long-suffering, so impatient with the whole situation – the stress of thinking of his reaction to me got me even more stressed. Jack asked me to get off of my desk chair and walk a few paces to get onto a benchI tried to walk, and got very weak and began to fall; I asked him to help me and he caught me, then I tried to walk and my body began to jerk rather spasmodically, not a violent threshing but short,unrelated, uncontrollable movements of the limbs, very shot, but enough for me to be unbalanced, and to fall and hit the floor. As I hit the floor, the edge of a bookcase grazed just an edge of my skull. I thought, “Oh, great. more brain damage. Just pile it on.”

I lay on the floor; he dutifully covered me with a blanket. He sat on the bench and looked down at me, no concern in his eyes, just weariness and a bit of eye-rolling. “Oh my god,” I thought”He’s rolling his eyes at what just happened here. Eye-rolling is one of the key signals of a marriage that is headed for the rocks. It means the partner holds the other in contempt.” Jack told me that no, he didn’t think it was an epileptic fit. He thought it was me being embarrassed because a few friends had suggested I use a cleaning service. I asked him if he thought I was just psychologically acting out all this week, when my bp has been sky-high and I tried to discuss stress levels. Was I just acting out the continued problems? He looked down at me and said, “I know that you have conditions that have been verified by diagnosis.” He was weary. He was sick of it all. He wanted not to have to deal with it; it was adding stress to his life At least, that is the way I imagined it, because he wouldn’t tell me himself when I asked him. He just said, “Do you still need me? I want to get back upstairs to entering invoices. I’ve got to file my taxes, gets those P&Ls, send the guy from Wells his material. So, it’s not the time for talk. It’s time to take care of the fucking book care of the fuckin’ book,

My caretaker needs care, and I can’t give it. I don’t even know if Jack would talk to a caregiver’s group, or would prefer private councilor, or would even use help of any kind. In the case of “For better or worse,” definitely got the worse. 5 years ago, I was a working woman, making close to what he was. I wasn’t athletic per se, but could dance all night, take a hike up Bear Mountain, had very specific dreams. I wanted to write; I wanted to  learn to write Film Criticism, specifically. But I knew I needed booth discipline as knowledge, so I was planning to attend Rutgers University English Department, and get a graduate degree. All of those things have changed. The Graduate Degree, In no way can I match the woman.

Yet he remains faithful, and loving at times, and makes sure that we have heat, and lights, and food. He gets up and drives all over New Jersey fixing computers, in a car getting progressively old, as are we all.I see how slender a reed is even a strong, devoted man in a car is on which to balance this entire edifice. I did at least get my dgree – although my memory is so bad at this moment that I cannot remember what type it is – but by then, it was only supposed to be a way station to a professorship. Being offered a large fellowship if I enrolled in the program full time, we figured that it wouldn’t be that bad a reduction in income, and I should go for the Ph. D., and the lifestyle that we imagined it would bring. We had Jake, I passed my Master’s Exam, and my Orals, was admitted into the Doctoral Program, received my M. Phil, even got that academic year long monster the Dissertation Proposal written and accepted …and ABDed out. I had begun getting ill right after Jake was born; I never lost my pregnancy weight. I never again earned as much money as I did before marriage. I couldn’t stay with any job because of my health.

I’ve developed hypothyrodism, an autoimmune disease that makes it nigh impossible to move much because of the joint destruction; a stroke problems, high blood pressure, and now CPS.I am  not at ALL the future he thought he was marrying. I have been a positive destructive force in his life, I often feel. Yet he stay with me, works hard, cares for the house as best he can, and stays focused hard on just whatever task is in front of him That’s the problem. I can see down the road, and see all the difficulties that beset us, that we cannot handle as of yet, and will have to find a way to handle, because they are looming.

What can I possibly do to help him? What can I possibly do to help myself? Central Pain Syndrome patients have stressed-out caretakers all along the spectrum of care and caring. There is the issue of belief in the actuality or the disease. There is no way to see or measure the amount of pain that we are feeling. We can’t describe it well, because as  the pain grows more intense your brain’s linguistic side seems to shut down completely. So does the power to make decisions, sometimes even to move from one spot. Sometime we get husbands and wives who joined the CPSA or the Facebook CPS page that I started, like the woman today who said, ” thankyou., my husband is the person who suffers from severe cps and I as his wife and caregiver am always looking for new treatments that may afford him some relief from this terrible pain.” They can be fiery advocates! We have a woman, Karen, who is a Trustee of Central Pain Syndrome Foundation, the group we have started to begin the 501, who is also working on behalf of her husband Scott, who is suffering terribly. There ares spouses who are positively disbelieving, including one who divorced his wife for refusing to stop complaining about her agonizing pain. There have certainly been divorces over CPS. Many days I have thought that Jack would be smart to drive me up to Boston, leave me at my mother’s house to apply for welfare and Medicaid, and move on. But he tells me not to dwell on that fantasy. Is it because it’s a little too tempting a scenario, or too horrible to contemplate? Or just a waste of energy…

It’s been three hours, a dinner of chicken fried brown rice, and a whey-milk protein-shot. Jack has taken his scotch-and -soda to his leather recliner in the den to watch TV. I am writing this and contemplating clutter on my desk, next to my desk, and in every other room. Jake is … doing whatever.Central Pain Syndrome is an isolating disease not only between the  subject – the person – and the public, but between the subject and the private, the people with whom.they are closest. One would need the stoicism of a saint to be able to live with the fact that one;s beloved is continuously suffering the worst pain known to Man, and yet is able to do nothing.

CPS doesn’t improve the moods of its victims, either, who are often snappish and peevish, if not sometimes anti-social. If you want to live in a continually calm household, someone with CPS shouldn’t be your roommate. Jack prefers a household without drama. I can’t give that.  Perhaps, someday, after the cure or at least treatment that really works, he can have the sort of wife he expected. Until then, he’s certainly a hero to me for his unflinching support – even if he is sometimes unable to understand or empathize.

[11.15 pm} I collapsed around 4 pm, and since eating and regaining my strength, I am very glad that the BP has been much more down to normal, in the 150/85 range. I don’t feel so terrified. Patients aren’t supposed to dignose themselves, but it sounds like I had a simple focal seizure. Hopefully, it won’t happen again – but CPS is a disease fo changes. It never stays one way long.

 

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