Monday, September 3, 2018
"State of the Oneness Address" sharing my heart
Often you will see people give an account of things going on in their realm. Businesses, politicians, statesmen, our President.
When our President does this it is called "The State of The Union Address". When my husband and I go through our household accounts I sometimes call it the state of our union address.
Last night while I wasn't sleeping, I thought it might be time to give a "State of the Oneness Address"
So here it is; My Address for this year.
It has been eight years since my diagnosis. September 3rd marks what I have termed as my "un-aversary" before on this blog. As well as the fact that I don't celebrate it. I do however try to mark it with an update of how things are going for me.
So, this year is year 8 and I can honestly say I don't believe much has changed. I am older. I may be weaker. But over all I seem to be the same. I seem to feel the same. My MS is linear. Or as far as I can tell, it seems linear. I don't seem to be having new flares or recurrences of old flares. MS for me in just a set of symptoms that are. They don't get better, nor do they seem to get worse. Except when Heat is factored in.
One could probably read back through this blog and read how my MS has been running. I really don't think it has changed. I am so thankful that I have not had a recurrence of Double Vision. Though I do have jumpy vision at times. I can't remember what my old neuro called that. I suppose that would be called a flare or rather an exacerbation. A temporary worsening of a symptom. I have MS damage on some nerves in my eye.
I have cognitive issues. Thinking is some times difficult for me. And fast thinking is a chaos maker. If I can be given the time to reason something out I usually can. If I feel rushed or like I need to rush all bets are off. It is a major source of frustration. Which never helps the situation.
My old neuro often cautioned me about this silent attack. This one doesn't show up physically at all. The MS thief goes for the thinking part of the brain. The only evidence is worsening thinking. Inability to remember and/or process correctly. I have to say here too, that thinking takes energy. Some times more energy than physical life. I think people overlook that. But I have been wiped out by trying to do paperwork properly. Or accounting properly. Or code work for a website. Or typing out a post for one of my blogs. Draft, rewrite, rewrite, etc. etc...
My left side is still weak. My left foot is 50% numb still. I still have drop foot on my left. My old neuro thought I could exercise and get the use of my left leg/foot back and to some degree I could. However, it would not or will not come back all the way. I have nerve damage that can't be fixed. When I explained to her that the exercises were not working and that the energy (spoons) it took to do the exercises was robbing it from other needed life attivities, she understood. Or seemed to.
I suffer from Spasticity. Mostly in my legs. Some days are worse than others. Spasticity is when the muscles contract as if to do work but forget to relax. The tension is all knotted up for no reason. It's very uncomfortable. Some times one can stretch them out and get some relief. There are some meds to try but I have opted out. I am currently med free. Except for suppliments, vitamins, etc. Which I have been on for years.
I have chronic fatigue. For some reason one doesn't get to nap it away. And napping can mess up ones night sleep which is difficult enough to garner.
And there's the rub.
The Spoon Theory remains true for me. I not only need spoons (energy) to take care of my needs. I need them to help my son take care of his needs. I need them to take care of my household needs and the weekly errands that are and those that pop up. I know we all have this kind of stuff that needs attending. It's life. I just need to be calculated in my usage of time and energy. Constant awareness. Like, If I do this now I will need to push that back or not do that at all. Simple right? I guess so. Heartbreakingly simple.
As I have mentioned before, Life is quiet here and we try to keep it that way. Not only for our son's sake but for mine. It doesn't seem to play well in the world we live in today. People seem to be full throttle all the time. It can be a challenge just to stay out of the way. Some times I joke about my synchros being out. I honestly feel like they are. And trying to synchronize my ability with a fast paced person usually ends in a clashing of gears. They don't seem to be able to slow down and I can't speed up.
If I don't come to an activity it's simply because I think it is not possible for me or through eight years of experience I know it is not possible for me. It is never my intent to cause bad feelings.Truly, I hope to not cause any hardships by my lack. That is always a concern. It's been hard to explain sometimes why I can't do this or that. Most understand my heat problem or seem to, many suffer from the heat. But I often wonder if they get the extent heat has on someone with MS.
Sometimes I wonder if I do? Then I remember a video I saw a few years back. It explained heat intolerance for me in a very understandable,visual, way.
The young girl, a track star, and MS sufferer, was at a track meet. She had a heck of a support team. They all knew she had MS. They were there to just help her do what she loved. Run. I don't remember the meter race she was running. Though by the end of her run, because of the heat her body was producing in it's effort to race, she was collapsing. Her gait turned ungainly and awkward. Willing her limbs to move even though the could barely do so. She did cross the finish line but in a heap. Her team rushed to her aid with ice and drenched her in it, buried her in it and gave her cold water when she finally could drink. After minutes of cooling she came back to herself and was able to respond to the help with a big smile. An award winning smile. A few minutes later she was on her feet and walking with help out of camera shot. My heart broke in sadness and in joy.
Resolutely I decided to try to never push myself that far.
I did have a glimmer of it on a hike this early summer that scared me and my support team a little too much. "We won't be doing that again" was the general consensus.
Back to my Address.
My MS is linear. The symptoms stay the same. Weakness. Cognitive. Optical. Chronic fatigue. Spasticity. Some others I don't want to talk about. They are always here. They don't get better with the absence of heat. They get worse.
MS is what it is. I deal with it however I can. This is not a great state of oneness address. but it's an address. I am here. One more year in the books. I will continue onward. The Oneness really only applies to the MS. I am the only one here that has it. I also have a heck of a support team. Some are Prayer Warriors.