Tuesday, February 5, 2019

"Moving On"

Again. It's been some time since I've posted anything here at "Lifting My Spoon".
I do continue to post, blog, whatever, at other places online. None of it is very important and probably only has relevance to me. I like to write. It's cathartic.
I use to have the belief that one should never write something down that they wouldn't want read. I stopped writing things down for a very long time.
I suppose a part of me still holds to that  belief but, another part of me does not care. Besides, few probably read what I write, so it doesn't matter.
Bla bla bla blogging is what I usually term anything I write.

"Moving On."

I really haven't much to say. Life is still much the same as it has been. One can read through this blog to find out what that has been like.
Unfortunately, this passed year, I have had the loss of my Dad. Which  is still quite painful. It came on the heels of the loss of my Mom. Which is still quite painful.
Though he survived her by one year, four months, and 12 days, it still was on her heels and the loss of them both is still quite painful. I don't believe the pain will lessen anytime soon.
I am so thankful for my Lord Jesus and His "Blessed Assurance"
I hold tight to that life raft.


"Moving On."

I really haven't much to say. Life is still much the same as it has been. I am still feeling the same MS-wise.
Maybe weaker.
Maybe more depressed.
I know that I still get tired easy and I still don't rebound well. I can easily toss too many "spoons" at any given task. Tossing too many "spoons",  my brain seems to let me know I'm doing that  by leaving me in tears.
Crying like a baby.
Lovely indicator that.
I have to watch that. People don't understand. I don't understand.

"Moving On."

The household is still status quo.
We are still all together. Even though I quip that I am not "all together all together". I find myself leaning more heavily on my beloved husband and our son G.
They are my doers. My runners. I am thankful I can send them for this or for that in efforts to save my steps and my "spoons".
They are the best.
They understand.
Often Gregg quips "It's all in my head" I smile and reply "Yep, and I've got the MRIs to prove it."

"Moving On."

I am still a beekeeper. It has been getting harder every year to bee one.
I have pared back the different aspects of hive care and I no longer open the hives just to examine the bees. Only the most important activities get taken care of.  The bees are basically left to themselves and I usually just go out in the cool of the morning to observe them .
Surprisingly just observing their beehavior can tell you how they are fairing.
So far this winter, I've lost one hive but, the other one is lively. If I lose that one too I plan to bee done with bees. I simply can not care for them in the manor I have hoped for.

"Moving On."

I have pared back on a lot of things I use to care for. Simply choosing "me care" over those other things.
I don't think people realize that even thought can be a "spoon" tosser. Trying to write out a blog, letter, or trying to read something with understanding can be a challenge for me.
I have to pick and chose what the day can take from me.
I still hold to the "one thing a day" habit I have cultivated.
I would love to be able to do this and then that and then the another thing too but, it doesn't work out for me without costing too many "spoons". So "one thing" is the standing rule.
My SVX

"Moving On."

This will seem petty to some.
Sorry if it does.
It's not to me.
I have a new car. It's not "brand new" but, it is new to me.
It's remarkable.
It has been such a pleasure for the "balance challenged" me.
My balance issues not only effect my walking, they  effect any motion.
I tell, those who ask, that it's like shaking an uncooked egg in it's shell or shaking a bowl of jello. If you shake it and then set it down it will continue to wobble. My brain feels like that.
A standard car messes with me. Even if I'm just along for the ride.
The higher the car sets the more body roll a car has when cornering. The more it rolls the greater the chance I will feel it in my head.
Plus the greater the speed of the car, the more body roll it can produced. It's a bad combo for me.
The passed few years I have been driving a Subaru SVX. It is low and has little body roll. Thankfully.
I purposely stay off the highways or other roads with multiple curves. Unless I can putt along at my own pace.
Even then repetitive turns can set up an oscillation feeling. Not good.

"Moving On."

My new car is a God Send.
Truly.  A God Send!

It's a Subaru Legacy GT.
The previous owner built it for Rallies.
What does that mean?
It's lowered. 
It's tight.
It's suspension is stiff.
It's braced.
There is No body roll. It's like being on rails.
It Goes.
It Stops.
It's perfect for me.
Confidence building.
It truly compensates for my disability.
When I drive it I am no longer captive.
I would hope that even those that have never been "locked down" are able to understand what this kind of freedom means.
Driving is one thing that commands one's attention. Other thoughts need to take a back seat.

I am "Moving On."
My Freedom. My GT




This is me. Happy.



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.




Conclusion:

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.