Saturday, September 3, 2011

Life Upside Down ~ the 12th month since my diagnosis=one year down

Usually when one announces a one year anniversary you half expect to hear a fanfare. Maybe that fanfare only plays in your head or you hum it to yourself. In this case there is no fanfare and if there was one I fear it would be a half hearted two or three note off key fanfare.
I don't feel very triumphant. Actually I don't feel triumphant at all. It has simply been a year. A year of Status Quo days, the new norm, the trying my best, and grace abounding. The later being the celebratory point. My Jesus has seen me through it all. To Him be the thanks and the glory.
It's not easy for any of us to walk this life. We all have rough roads, periods of smooth sailing, valleys and mountain tops. I am just thankful that no matter what is going on, whenever, whatever, as we all can a test to, we can cast our full cares on to One that cares deeply for us all.
This year has been full of disappointments, joys, strengths, weaknesses. Looking back is hard to do and is sad. Though I am so grateful I have made it through and I know I will be guided on, it is still hard for me and sad to realize other than making it through, nothing has changed. The days are still the new norm, the Status Quo. I have known this disease would do this. That ms doesn't stop it's progression. And as I have mentioned before that it is disheartening in that fact.
Never the less, onward we press.
Through out this blog I refer to my days as the status quo. This is just my way of trying to simplify what happens every day in this journey, the effects of my ms.
Each of these symptoms seem to happen every day to some degree or another. It's hard to think that these can come and go through out a day or even though out an hour but, they do.
I'll start with the most earliest symptom of the morning. This symptom can show itself anytime of day or night but, since it is the one I first experience every morning It gets top bill.
The 2nd most earliest symptom evident in the morning is Balance.
I also am aware of my nausea.
Acid reflux may be evident as well. I have been on omeprozole to help this so it is to a lesser degree but still rears it's head. I have been taking it for most of the summer and have decided that I should try something else. The only something elses I came up with is peppermint and acid busters like tumms. The acid reflux still happens but, has been tolerable?I'm not taking omeprozole at the moment. Not that I think it's bad. But, the warnings on the package made me think I should give it a rest.
As I progress through the day my cognition issues will show themselves. This depends quite a bit on the load that the day has in store. I haven't had a symptom free day for a long time. In fact. I have only had one since my diagnosis.
Sometimes this cognition stuff is just a little fuzzy thinking. You know forgetfulness. Losing, I mean misplacing things. Little stuff like that. Most everyone does this kind of thing. Our minds are busy with going about life and some times the thoughts slip a cog. Other times this gets worse and I just have to stop and give into the fog. I haven't had an episode of the dizzy, lack of vision, cognition trouble thing happen for a while now. Maybe the low key lifestyle is helping dissuade that? Maybe not.
I am usually not weak in the mornings but as the day progresses the weakness follows suit. Other days the weakness is right there and hangs on. It's hard to describe these things. I've often thought that describing these things is ridiculous. Everybody gets tired. Everybody feels weak sometimes. Everybody has good days and bad days. So what's the big deal. So I feel weak sometimes. ? Well, on the flip side, it just plain scary, unnerving to be reasonably fine one moment and the next have your right hand lose 20% of it's strength. Just like that. And granted maybe the next minute your full strength is back or maybe not. Maybe it progresses to 40% loss of strength. Maybe it last for an hour this way or maybe the whole day. And then you do the battle in your mind that happens with each recurrence of the symptoms you have every day. The battle that makes you ask, is this going to stay this way always now? Is this the loss of the ability?
I don't want to be the whiner I feel myself becoming but, I do get scared. A lot of times I worry about this life of ms. I remind myself to cast my cares upon my Jesus and that He cares for me. I still have the troubles but, He cares for me.
Pressing on.
There are a few symptoms that I have that I haven't mentioned in the blog. I may have eluded to them but that is all. And that is all I will do here as well. They are still a battle and a battle the garners my greatest attention. To keep them at bay, I try to drink 8 to 10 glasses of water per day. I try to eat properly for me. Some people won't or don't have trouble with certain foods. I have tried to learn the ones that give me trouble and I stay away from them. If for some bizarre reason I forget the trouble makers and partake of some, I never get away with it, they always cause a problem.
A long this line, I take cranberry caplets daily. I also eat canned whole cranberries for lunch or dinner daily. Though these two cranberry supplements are taken for two different reasons, I have learned that for me cranberries in whatever form are a God send.
As to water. I can't speak highly enough about water. We take it for granted so much of the time.
I have always liked drinking water. I am so thankful that I have lived in a place that the water has always tasted good. I know that a lot of people don't care for water. Members of my own family are like this. But, from research we can learn all the benefits of water to our bodies. Water helps everything your body does. Keeping hydrated is so important. If you don't care for the taste of water add a little lemon or lime juice to it. Try to remember that other drinks can actually rob your body of water. Coffee and tea are diuretics. o.k. off the soap box now. ;-)
For me, if I didn't drink as much water as I do I would be in big trouble in a big hurry.
Little things I've learned over the course of this year.
Not to push a bad hand.
Stealing that term from card playing. Simply means if your cards are bad, you fold. You can't really win if your cards are bad. Bluffing, for me, requires at least a couple good ones.
Some mornings I wake up with the grandest of plans. So I start to prepare. The event solely depends on the ease of preparation these days. What kind of cards you get dealt through the morning. If all goes well, the event can progress. If things start poorly, the event gets pared down. If all the cards are bad, we fold.
My kid helped me with another analogy. It can be seen like launching a rocket. As we get ready for the day, we use the "Go" "No Go" principle. If something happens during the preparations we weigh what happened and decide if we can over come this and "Go". If it is too great of a problem, it makes the mission a "No Go"
Each step along the way gets weighed. Each step gets it's "Go" or "No Go". Last week we even made it a good way down the road before a "No Go" appeared. We of course are not immune to disappointment. But these guidelines seem to have made us safer and have kept us safe.
A few last thoughts.
MS has made me a liar. People greet me and ask, "how are you?" My most common response is "I'm fine". When more than likely I do not feel so fine. This is simply the easiest answer.
The hardest thing of the year is the "day to day" "no stopping" of my ms.
The kindest thing of the year was sent in an email shortly after I notified family of my diagnosis. It read. "I don't know what to say but, it doesn't mean I don't care." The strangest thing of the year was in the form of a comment, though by a concerned person. It was. "Do you still have ms?"
The most wonderful thing of the year is the love unbounded made evident.
I don't know how I look, I just know how I feel. I see the concerned looks on family and friends. I see the questioning looks on strangers. Granted this could be because of my choice in eyewear.
I battle fears and depression, tears and worries. The thing that ms has given me is a knowledge at how flawed I am on all levels. And how bad I need Jesus. Thankful He is near.

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