One day it struck my brain,
And with it came much pain.
Fear of the unknown gripped my heart,
My doctors knew not where to start.
They ran their tests, gave their medication,
My brain got worse and all I felt was pain.
From reality, I took vacation
Trying to escape, but just went insane.
>ð|~@-@~|ð<
The dark spot, lesions
Brought Multiple Sclerosis
I slowly degrade
>ð|~@-@~|ð<
Brain
Lesions, Damaged
Hurting, Spinning, Slowing
Memories of what was
Thoughts
>ð|~@-@~|ð<
Right now, I can feel a large “chunk” of the left hemisphere of my brain. It feels like hot steel knives, followed by cold steel knives are slicing away at that chunk of my brain. The waves come every few seconds and I don’t know if it will be a hot knife or a cold knife. At the same time, I feel as if that entire portion of my brain is being imploded itself. I can feel the distinct lines where the knife slices are cutting through my brain, and at the same time, that entire fist-sized chunk of my brain is being imploded, painfully imploded, at the same time. Lots of fun…good times!
I can feel the seizure coming on. It begins with little, mini-seizures, like warm, numbing water being poured out from my head and quickly flowing down through and throughout my entire body, acting like Novocain, numbing the body, and mind. These waves become stronger and stronger and with each one, I lose more and more a grasp on coherent thought as my cognitive abilities are “washed away” with each mind-numbing, cleansing wave. Then I start twitching. Usually a group of muscles in an arm or leg, or both arms, or both legs, or sometimes, just every muscle in my body just starts twitching. And the jerking begins, just random, rapid, painful contractions of various muscle groups.
These used to freak me out. They used to freak Sheri out even worse! I try to remain calm now and not panic. That doesn’t actually stop the seizure from coming on, but it does lessen the severity of the seizure because of the fact that I am not panicking, not flooding my system with adrenaline and other “flight or fight” hormones, while my body is already in distress from the seizure.
Not all my seizures are massive seizures and I don’t have full-blown grand mal seizures but a few times a year. However, I do have petite mal and partial seizures all the time and they are very tiring. Afterwards, I usually am very disoriented, have difficulty walking, or thinking clearly, or speaking, and for hours and often for a day or two afterwards, my muscles are very, very sore. Sometimes, if the seizure is mild, I bounce back rather quickly. On the other hand, if the seizure is also accompanied by a TIA, and I end up paralyzed (usually my left leg) for 15-30 minutes afterwards with a droopy face and sagging eye, it can take several days to a week or two for me to fully recover.
Well, it’s starting to escalate to that point where I just have to close my eyes and sit and wait it out now, and just enjoy all this fun time with seizures!
>ð|~@-@~|ð<
Yes, a common theme for those of us with MS, is that of pain. For me, I feel as though I am being drawn and quartered, well, at least my left arm feels like it’s being torn from my body. The pain is unlike anything I’d ever imagined I could ever learn to live with. There is a deep, burning, tearing pain down inside the shoulder socket, then my trap up to my neck muscles are pulled tight and I can feel the muscles pulling on my large arteries that run down the side of my neck, then the pain radiates down my shoulder and down my arm, shooting lightening bolts of pain down my arm and into my elbow joint. The pain also radiates around my back and into my shoulder blade and it feels like there is a steel rod stuck under my shoulder blade, jabbing it upwards, trying to pry it away from my body, and tear it off…I guess when my arm gets torn off too? LOL!!!
For the past few days, the pain has increased greatly. I don’t know why, but I think it’s because it’s been so hot lately and I’ve not been sleeping well….well, I never sleep “well,” but here lately, I’ve not even been getting any napping during the day, so I’m only getting 3-4 hours of sleep a day.
It’s funny. I could write a novel on all my aches and pains. I live in constant pain. I hurt all the time from so many strange places on my body that should not be hurting and have no reason to hurt. It’s just my broken brain that’s “telling me” that I hurt. I wish it would also “tell me” that it doesn’t hurt for a while…
>ð|~@-@~|ð<
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I have so much in my life to be grateful for – there is so much that is going well for me – so much that feels right and good. I have worked hard to know a feeling like this and today I will let myself have it. I really believe that the purpose of life is to be happy. In my lack of awareness of myself I have perpetuated an old habit pattern of focusing on the negative. Things can be basically good, but if there is one thing going wrong, that is what will take my focus and occupy my attention. It is time for me to accept being happy. At one time in my life, I lost happiness, and since then I have never trusted life enough to relax and accept good and grace. I want to trust that my days are meant for me to enjoy as I did when I was a child before I learned differently. I want to trust life as I did when I was young.
“Just try to be happy. Unhappiness starts with wanting to be happier.”
Sam Levenson
We all have an internal conversation or dialog with ourselves that we tend to carry on constantly. Often I find myself projecting what the outcome of a situation is going to be or trying to predict what is going to happen given the situation at hand, and generally, I “catch myself” thinking negatively, and predicting conflict, or bad outcomes and expecting the worse. For the past 6 months, every time I “catch myself” going down the road of having negative internal dialog, I STOP myself abruptly, and remind myself that negative thinking just causes stress, resentment, anger, frustration, and unhappiness, and I stop thinking about the situation entirely altogether, or I go back and rethink the situation, but from an all positive perspective this time and with a positive outcome this time and not a negative outcome. Additionally, when things do go wrong now, instead of flying off the handle, I examine the situation thoroughly and look at all aspects involved to determine which ones were unavoidable, which ones were accidental, and which ones were the careless, uncaring ones that are the root cause of “the thing going wrong” in the first place. This helps me see everything from a larger perspective and understand the world more harmoniously, and it reduces the amount of negativity that I do feel because I peel away the layers of ill feelings one layer at a time as I work my way down to the actual, root cause. So instead of a whole large onion’s worth of anger and frustration, I now only have just the itty bitty little core of the onion’s anger and frustration.
I find myself looking forward to tasks from a negative standpoint, always expecting the worst outcome, expecting everything to go wrong and fail, which unfortunately, quite often tends to be the case – when you’re rushing and trying to take shortcuts! So in the past few months, I have tried to catch myself when I am expecting the worse and stop that train of thought, and think of something else, think that everything will run smoothly, go over the details to try to remember everythng so that it all runs smoothly, or just visualize everything turning out well. I’ve done a lot of positive visualization in the past 6 months and I’ve found a lot of peace in the process, and a lot of happiness too!
>ð|~@-@~|ð<