Welcome

Welcome to all who visit this Blog whether you suffer from Multiple Sclerosis or have a loved one who does. Hopefully this will help all who read understand that they are not alone even though MS affects us all in very different ways. Maybe it can help open eyes of those around who do not know the unpredictability of daily life with MS.
The purpose of this blog is to offer support and inspiration. Please feel free to share any useful information that you have gathered along your journey and words of inspiration. It is hard to overcome all the obstacles we must face and it is nice to hear ways people have adapted. Inspirational stories and anectedotes are especially sought after.
If you post and suffer from Vision disabilities you are welcome to post in all capitals and no one will think that you are shouting.
my blog

Saturday, February 27, 2010

weebles wobble but they don't fall down

Went to work today.  Another exciting day, not really.  I miss the exciting days.  Helped to triage a patient and had to walked through step by step through the computerized charting because it has been so long since actually doing any kind of patient interaction like that.  Was only momentary though and back in the office making follow up calls.
I find it hard to focus.  I want to be out on that floor but I know that I probably never will get to be.  Makes me sad because taking care of people makes me so happy.  I need to take care of me now.
Today I still used the cane, but I felt like maybe I don't need it anymore.  The problem is the longer I am up walking, the more I really need it.  I get clumsier and off balance as the day progresses, so the dilema is do I use the cane all the time or carry it around until I need it later in the day (and how dumb would it look to carry a cane but not use it) (not that perception matters, but it kind of does to me).
I wonder what it is about this disease that makes day to day so different.  Some days I am at a higher level of functioning than others.  It's so bizarre.  I have never been quite normal since April (I am sure this has been a repetitive theme in my blogs), but one day I am walking with barely any problems and the next day I feel like I have those big old clown shoes on and stumbling all over the place.
Maybe I should wear a shirt that says If you pull me over for a sobriety test, I will fail, not because I've been drinking, but because I am MSing.   Hope to never get caught at a checkpoint. I will surely fail their field test.  The whole irony of that situation would be that I don't drink (very rare).
Anyway, just sort of rambling on.  No real though process here.  Having issues with that today too.  I have noticed that my spelling is awful lately.  I can't make a complete sentence. (except that one)  My coordination for typing is way off.
This has really turned out to be a diary more than anything.  I am sure that no one really reads these but they help me in the end.  I have to tell you that looking up these end of the post quotes has been helpful too, inspiring.
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ...Mother Theresa 

Friday, February 26, 2010

fatigue

Trying to beat this fatigue.   I am so exhausted and drained.  It takes everything I have just to move my body.  My body feels like it's being weighed down by 10 tons when I get up and move around.
 I think about how before I knew that I had MS and I would get this fatigue, it was so confusing.  The "normal" me is very active and never stagnant so when this overwhelming fatigue would come I would think how "lazy" I was.  It's not like I would just sit on the couch and not do anything.  I would get up and do normal everyday stuff , but I was utterly exhausted after simple tasks.  I would become so clumsy and stumble.  It would never last for very long, just a matter of weeks and it would be like nothing ever happened.  Now it's always with me and it frustrates me so.
When I was first diagnosed, the MS doctor asked me what my most troubling symptom was.  I could have chosen from a plethera of symptoms such as foot drop in left foot, trouble walking, trouble talking, coordination problems etc.......  But the Fatigue is the worst for me.
"If you're feeling low, don't despair. The sun has a sinking spell every night, but it comes back up every morning. The way I see it, if you want the rainbow, you gotta put up with the rain."     Dolly Parton

Tuesday, February 23, 2010

accupuncture

I went to accupuncture today.  I can't believe that I was such a doubting Thomas before.  She is amazing.  Today we worked on not just my pain but also on my MS itself. 
The needles themselves actually rarely ever hurt and compared to the injection I give myself every night, they are nothing.  She feels the scalp for tender points and puts the needles in those places.  I am amazed how she knows all the tender points.  When I try to feel around I can't seem to find them, but when she presses down, OUCH!!!!!  and this is just the scalp.
My session was longer than usual.  The normal session takes about an hour, but today was a hour and a half.  I fell asleep. Sometimes she puts these electrodes on my muscles that pulse and they end up making my muscles relax.  What a relief to my tired and achy self.
I think the effects of the steroids are wearing off because the last three days I am taking more and more naps and actually sleeping through most of the nap.  When I am on steroids, I can hardly sleep at all.  The effects seem to stay with me for over a month after I stop taking them.

"Throw back the shoulders, let the heart sing, let the eyes flash, let the mind be lifted up, look upward and say to yourself... Nothing is impossible!" ~ Norman Vincent Peale





Sunday, February 21, 2010

Sometimes when you are sick you can become so self-absorbed and not realize that there is a whole world out there that is suffering. I try not to dwell on my illness, but when I do I remind myself that I am not as bad as others and not as sick as most.
Today I went to church.  As I have said before, this is a place that brings me joy and happiness.  I feel so comfortable and welcome there.  If you really knew me, that is saying a lot.  I am shy and takes a lot for me to feel comfortable.  I am good at faking comfort, when inside I feel a huge amount of anxiety.  Church reminds me that there are people with bigger problems than I. I am lucky to be loved, loved by my family, friends and mostly importantly by God.  He loves me no matter what I look like, how I walk, how grumpy I may be, and when I fall short of expectations.
"Worry weighs a person down; an encouraging word cheers a person up".     Proverbs 12:25 (NLT)