Here we are at the end of 2014 and I've only blogged one bit of it here. I do have a blog at onceinabluemoon.us that I try to update weekly with little snippets of our life. Most of the readers there call it cryptic, as of late it has proved less of a mystery especially if you know me or have known me for some time. Or maybe that's just fooling myself.
Anyway, back to this 2014 that we've just lived. I am doing well. I think. Not as well as one would hope for.
It's been a slow paced 2014.
I guard my spoons.
I've learned that taking a nap with hopes of gaining the spent ones back does not work. At least not for me.
I've learned that having a family member that I've been a caregiver for is now a caregiver for me. Which makes one wonder if one can see a glimpse of God's greater reason for the "why" of this young man's life. (Romans 8:28 KJV And we know that all things work together for good to them that love God, to them who are the called according to His purpose."
I've learned that my MS is a "thief". That's the name my husband has given it.
I've not gained new symptoms. Thankfully. Nor have I lost any old ones. They are all still present. Actually I guess that's not true. I haven't experienced double vision again. TYJ. that's "Thank You Jesus." So I suppose I have to say there is a new one too though it's been around since the double vision left. I do have episodes of what I call eye jumping. Some times when I am looking forward the peripheral vision on the right jumps. Quavers. Shakes. I don't know what to call it. Things on the vision line jump up and down. It looks like the counter top (for instance) is bouncing.
Anyway, This symptom doesn't happen all the time. Just occasional and I really haven't figured out what starts it up. Fact is, at this time in my life, I've stopped trying to figure it out. It just is. To much examination of the "why" tends to be depressing and I battle that enough without adding fuel to the fire. I just try to live life with what I've got. I just try to live life as best I can. Don't we all have to do just that?
I will say here, One of the reason I don't blog much is cognitive problems. I don't sit down very often and type out my thoughts on things. It is difficult to do so. And even just sitting at the computer and trying to get thinks put down in any form, however poor, is a task. And it uses spoons that some days I just can't afford to lose. Also, to me, it all seems like I am just complaining. I try to avoid complaining. I can't do anything about most things. I can do something about complaining.
Throughout this past year I have tried typing out some of my thoughts.
I have sat down to do this a couple of times this year and have never gone back to them to proof them to get them uploaded to my blog. So, the next part of this blog will include those attempts. revised.
Spring time 2014
To be sledge hammer blunt, life is a tight rope walk. I oft times find myself saying that and other little quips to explain what it is like for me if asked. The truth is that it's hard to explain what it is like for me so the quips come into play. MS is interesting, to say the least. MS is multi-faceted. It is for me, and countless others, a mire of symptoms. Most of which intertwine so that one single problem is not preeminent. Most of my inner circle knows when I say things about spoons it means I'm running low on energy. Other problems may go unnoticed because MS can be ,and is for me, a silent, invisible disease. I try to guard against the fatigue that can get debilitating. I guard against heat and stress that can take my strength in a moment's notice.
On the same coin but the flip side- that strength can return in a short time if I mellow out or cool down. Sometimes strength fades for no apparent reason and returns the same.
My strength and dexterity in my hands will fade away. Mostly my right hand. It mysteriously returns as it left. Time spans vary. The same with my feet but, with them it is numbness. I believe my right foot is numb to some degree all the time.
Depression needs it's own formula. Tears can and most times will come without reason if I over do. I may not even be overly sad but a breaking will occur. Standing too long in one place, for instance. I mourn the fact that I can't do what I use to.
At times my equilibrium is bad. I have difficulty walking. My husband says I do fine but, in my head it is all messed up. It takes a lot of concentration to walk normally. At home a do a MS shuffle in hopes of not falling. Coordination is out the window.
Cognition troubles fade in and out. All of this lends credence to what is going on in my Central Nervous System. The pathways for some of the signals are being damaged or have been damaged. The signals get blocked or confused. The brain tries to do an end around of the problem areas, if it can. I've read that this causes the brain to work overtime hence adding to the fatigue problems.
Some days if I do all the right things, if I walk the tight rope safely, I have a pretty good day, it could even be called a really good day. Other times it doesn't matter. Those are just bad days. They are what they are. Recently I've had to be a bit out and about. I've needed to be in a type of place I would normal avoid. But, with caution it's been o.k. Tho' the quips "sword of Damocles" and "Russian roulette" do make an appearance on my lips a couple times. I try to be diligent and not give myself any reason to attack me.
This was titled - Dream 2014
My neurologist is a fire hose of information. I really like her and she gives good care. I feel that my well being is her one and only focus when we visit. I am truly well pleased with her style. Tho' I always take my husband in with me so that he can catch what I miss. In this case adage "two brains are better than one" is true. It's been four years since my diagnosis. Actually weeks passed that anniversary. We didn't celebrated.
On one of my first doctor visit with my neurologist, in amongst the flow of information, I caught this one stream. "Don't get hurt." It was amid the part of general MS information about infections and my body's new response to illnesses, cold, flu, and injury. Over the past years I've been careful. The first couple years I still rode my motorcycle. That ended this year. I figured, if I can't walk cross the kitchen with out crashing, I've no business on my bike. The words "don't get hurt" still fresh in my mind.
I drive less now. It was a passion. I loved to drive. My cars have always been manual. Shifting was fun. Is fun. It's all a challenge now and going to the store or church takes most of my energy. One my ask, why? It's driving? You're sitting down? The answer is cognition. It takes a lot of focus, a lot of thinking to drive.
This latest visit was not a disappoint. She was attentive and her normal fire hose of information. She had gotten back my latest MRI and was going over it with me. Time for a med change was the jist of it. She didn't go into the old list of things I've lost. She knows I know that. She didn't go much into the new things I'm loosing. She knows I know that too. The area of the latest damage, the reason to get moved onto a different med, was her focus this time. And when she noted the fading of my attention she rolled away for the computer monitor and squared up with me and looked me in the eyes.
She dropped the medical gush of thought. Instead she told me a dream, a hope she had for me. She told me we need to switch meds. That the one I am on is not doing the job. Hopefully another one will do better and slow this up. She told me she wants to get me, I want to get me, to an older age.
As we age our immune system slows down. After we get to a certain age one might be able to go off the DMM because the immune system gets so inactive it stops damaging they myelin. We need to stop the damage happening now so that If you are able to go off the meds at that time in me life, I could do the things older people get to do. Travel with my husband. Enjoy life and still have ability to enjoy it. Just needing to slow this damage up until the body slows itself up.
This was titled: MS Winter 2013- 2014
The best way of explaining MS, for me, is to use the electric wire analogy. It's a simple concept for me to explain, I think, and it is a concept most people can grasp.
In this analogy, the electric wire represents a nerve in the CNS (central nervous system). If one has an electric wire that is coated with a plastic or rubber sheath it can better represent a nerve with myelin, the insulating substance around the nerve. The electric wire being the nerve and the coating being the myelin. MS attacks the myelin. This is known as lesions during an active attack of MS and when these lesions heal they are known as scarring.
Either one can cause the passage of the brain's signals to the body to be impaired and/or interrupted completely. Just as an electric wire can short out if the wire's covering is bared. (short circuit) Even if one tapes the bared spot on the wire the electricity can be impaired.(healed but scarred) The light the electric wire runs may work but because of the faulty wire it does not work at it's full power or is intermittent.
Some of us have had appliances with bad wires running them. Depending on the damage to the wire, the appliance may not work at all or it may work poorly or the electric wire running the device gets over heated or stressed and the unit fails. When the wire cools down again the unit may be usable. At times the unit will work though inefficiently, taking more power to do so.
For me, this explains quite a few aspects of MS. When one is having an active attack it manifests itself as a new symptom. Let's say, a body part that hasn't went numb before goes numb. Not a fallen asleep numb that can be woken up in a few minutes but a numb that stays numb for days. O.k. It's a new lesion on the myelin of the nerve that runs that body part. After a time that lesion heals. Then there is scarring on the nerve's myelin. The body part starts to feel normal again. If the person is over stressed, or over heated, or over tired, the numbness reappears until the heat, stress or work load is lessened. However if the initial damage is too great the effect of the damage can be permanent.
Maybe a new route or wire for the signal can be obtained.
Well that's all I think I know about it at this point.
All I know is I have symptoms that occur because of some scarring of some of the myelin on the nerves that run parts of my body. When I am over tired, stress, too hot, or ill with a cold or something. These symptoms become worse or flare up again. When I feel better, the symptom with go away or diminish. At times going thorough the cycle is very tiring and an over all fatigue sets in.
For the most part my symptoms are with me always. I keep a little notebook with a calendar of sorts. Each day I record the words "Status Quo" That's a catch all phraze I use to express what day I'm having. All my MS symptoms. The next thing I write down is the symptom that is the most bothersome for the day. An entry may look like this. 1/22/2014, Status Quo numb right foot. O.k. usually both feet are numb but on this day the right foot was the most bothersome.
Since non of my symptoms seem to trump any other and I don't really seem to have new ones appear, I am suspicious. I am anxious to hear my Doctor tell me if I am still MSRR (relapsing remitting), or have I changed to progressive MS. I had high hopes that the colder weather would allow me to regain some of the strength I had last year before summer hit. So far I don't believe that's happening.
"Amazing Grace how sweet the sound that saved a wretch like me. I once was lost but now am found, was blind but now I see. T'was Grace that taught my heart to fear and Grace those fears released. T'was Grace that brought me safe thus far and Grace shall lead me Home. ____________________________________________________________________
Well, I think that's it. I know, I think it's a jumble. I will welcome the New Year and have hopes for it's betterment. I have learned from this past year, hopefully, how to get through. I'll try to safe guard against the "thief" and remain thankful for the love and help from my caregiver son and am indebted to my beloved husband for all his love and steadfast help.
May you all, May we all have a Blessed New Years.