Friday, June 3, 2011

Life Upside Down - Nine months in

Here we are, through our ninth month with ms. I must say not a lot has changed from last month. Which can be termed as good and bad. But, that is life. Some good. Some bad. Right?
We continue to roll through the Status Quo days. They are a bit different now. We have had what I called a relapse last month. We do have a slight softening of those symptoms. Though they do remain as part of my ms now.
I still have the normal dizziness and balance issues. They are so common now and show themselves at the same time that they have been listed in my Symptom Tracker software together as one symptom. That simplifies logging for me.
I still have cognition trouble which seems to flare mostly when I'm under stress. I try to not have stress in my life but, we all know that is not realistic. Even just a chat with someone can bring stress into your life. One or two misspoken words can load the stress pretty well.
The up side of some of my cognition trouble is the sheer comedy of it. Laughter is a great weight lifter.
The nausea has been the most unpleasant. It is still with me. Thankfully it doesn't stay solid nausea all day and night long. It comes and goes throughout. No rhyme or reason. Peppermint and the like are still most helpful.
I am still having weakness trouble. It's been the same for this past month. I am usually fine in the morning. Though some days it arrives early. Mostly now in both arms and hands. I still comes and goes.
The evening still arrives with the heaviness in my legs. I've realize that this is probably spasticity. Some evening they are heavier, tighter than others. Some times if I get up and stretch them or work them on the stair stepper that will relieve them some.
I've had some mystery symptoms show themselves. I was going to call them voodoo symptoms but, though that is what it seems like, I don't like connecting that term to me. So mystery symptoms won.  O.k. all symptoms connected with ms are mystery symptoms. But, I'm talking about the ones that aren't common, the ones that don't seem to make it on a list of common symptoms, those I call mystery symptoms. Actually they are just plain weird.
In previous months I was talking about hot spots.  I haven't had those quarter sized spots on the bottom of my feet for awhile. Thankfully. I have had  just my left foot tingly. Not like it has fallen asleep. Just tingly. And my lips have gone numb a few times with the same tingling. I've ended up biting my lips on these occasions so I try to be careful not to chew while this is happening.
The weirdest mystery symptom is visual. Out of the corner of my eye I think I see something. It differs in subject. Some times I think it's an animal. Some times I think it's a bug. Some times I'm not sure what it is, it just is.  But, when I look again it's gone. Other times I'll be looking for something and be totally missing it while looking right at it. For the most part I believe there is nothing wrong with my vision optically speaking. I believe I am just having difficulty registering what my eyes are seeing. I am learning not to react strongly to these things.
These mystery symptoms are rare, but they do happen. And they showed themselves last month and this month.
A couple of things happened this month that I am a little unhappy about. They are not ms symptoms related but they are ms related. They are my reactions to my symptoms. To be more pointed. They are my reactions to my relapse. A couple weeks before this relapse my son was fighting a bad cold. It really hung on a long time. I was mega doseing vitamin c to try and keep it from hitting me. I ended up with a light cold. Though I am not sure, I can never be sure with ms, I think that triggered my relapse.
This has set up a fear or a caring in me that I am struggling with. I am concerned with germs now. To the Monk stage. O.k. maybe not to the Monk stage. But, more than I have ever been. O.k. this is probably a good thing to some degree. But the trouble I am having is in the making my concerns and needs known to others. I am having a little trouble standing up for my self and at the same time not putting my needs over others.
I'm probably not saying this well. So I try to paint the picture.
Grandview  photo by JC-thanks
My son and I went for a drive with some of our family. We went to place some flowers on some loved ones' resting places. It was a wonderful drive and a great time. Everyone seemed to have a nice time.
After returning back to town, the driver of the vehicle wanted to stop and pick up her granddaughter before going to her house. My son and I where still in the vehicle because our car was at her house.  I remembered that her granddaughter was just recovering from a cold and had had an ear ache the day before. So I asked her to take us to our car first. She was very gracious and gladly took us to our car first. I was so sad that I had asked her to do that. It put her out of her way by several miles. But, I felt like I couldn't take the risk.
Again, a couple days later, my son and I were at worship. They had prepared a beautiful Communion service. It was set up a little different than what was usual. The wine was in a communal cup with which we would be dipping our bread into. I mentioned to my son that I may not partake in Communion this time but, he should feel free to if he wanted to. I explained my concern to him.
His loving concern for me is so touching. He asked one of the associate pastors to put some of the wine into a separate cup for me. The associate graciously put several individual cups onto the table, one for me and any others that did not want to use the communal cup. I was thankful to my son and pastors for their understanding.
O.k. maybe dipping a piece of bread into a communal cup is no different than dipping a chip into some dip at a super bowl party (aside from the spiritual level) But, believe me I'll be rethinking that too.
There it is,  my concerns about weighing my health needs against others needs. I pray the Lord will help me find the right way to make my needs known without asserting them over others needlessly.
So that's been the past month. I continue to learn about my ms. I continue to experience it daily. Physically and emotionally. I caught a glimpse of acceptence this month. I felt a small change in me concerning my ms. I'm still not sure how this will all play out and I probably never will. I will walk this life and I will never be alone. My God walks with me.
Thanks for listening.


  1. I knew the reason for your request the other day, Kelley. It caught me off guard at first, because I knew it was out of character for you. But like I tried to explain in one of my blogs the other day, when you know ones character, you can pretty much find truth. Because I knew it was out of character for you, that caused me to stop and realize why you made that request. It was only a moment or two before I had my answer.
    That is pretty strong don't worry about how it may sound or whom it may offend...if they know you, they will know. ;-)If I figured it out, I bet everyone else did too. sweet of Grady...I love that..and I love your gracious and kind pastors, too.