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

Thursday, October 4, 2012

Sum it up

Well it has been a few months since I lasted posted, the whole summer actually.  Main reason is that it turned out to be a pretty busy summer.  I was "sick" for a little part of the summer, regressed to using a walker, but am now happily back using my cane.   However, I did buy me a new snazzy walker with 3 wheels.  Turns on a dime.  I actually think I walk better using the walker, but it is not always necessary.
I am glad that the heat is being "turned down".  My body was not happy with it.  Spent time indoors, but our swamp cooler was not keeping up with the heat of the day,so I watched ALOT of t.v.  Boring. 
August was spent with my parents who happen to have central air.  Oh glorious central air, why have thee forsaken me.   I LOVE CENTRAL AIR.  Here is the funny thing about me though, I get cold.  So here I am with the glorious central air, covered up with a flannel throw. 
Now the temperature is perfect.  70's.  I love the 70's.  I can function so much better.  Yay for the 70's.  Still cover up though :)
I did get to go on vacation with my family.  It was wonderful.  Took alot of naps to be able to get through each day.  Nice to be away though, get out of the house and all.
Hmmmm.....so the time I did spent with my parents, I got fed ALOT of food.  Oh boy.  My pants are not happy with me right now, so now that I am back in town, I will be going back to swimming and working with a trainer to help me.  Bathing suit......ARGHHHHHHH


Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.


Philippians 4:6-7

Thursday, May 17, 2012

Sunshine and roses

I am tired.  That pretty much sums it up.   Well that and maybe I slightly overdid it yesterday.  So I am tired with a clean house :)
I am sitting here looking through my screen door at my roses and flower garden.  How nice it must be to bloom in the sun.  Having the warmth spread all over your face and soaking it all in.  Sunshine is not my best friend now a days.  Well let me reiterate, heat is not my best friend.  MS and heat = vision fade in right eye, an exacerbation of clumsiness, balance problems, increase in leg fatigue, numbness and tingling, exhaustion within minutes and the best one is the drunken speech.  I bet the flowers don't have that problem.  Maybe they do in a way.  If you don't water them, they droop.  Maybe MS is like a watering problem in the heat.  If you can't cool down you droop. Hmmmm, interesting.
Still, love the sunshine.  Now I enjoy it in the early morning or as it is setting.  Beautiful times of day.  Bought a cooling vest, but that didn't really work out so I can enjoy it from a distance.  Watching the butterflies on the flowers.  Our adopted lizard who has made our garden his home; we named him Bob.  He comes back every year.  The beautiful and tantilizing colors make me shine just like the sun.  My inner sunshine comes out.



http://www.youtube.com/watch?v=E1fzJ_AYajA&ob=av3e

Tuesday, May 15, 2012

Ruby Red Slippers

Paying a little for the overdoing yesterday. It's a hard balance between participating and surviving.  When my energy is up and I can do more things, I just can't help myself.  Still striving for my yesteryears.  So today, I am exhausted.  Managed to do a couple loads of laundry and had my daughter take me to the store for some household goods, then it was everything I could muster to cook dinner.

It's funny the silly things that come to mind when you are deprived of certain things.  So a while back I posted about an AFO I have to wear related to some mild foot drop.  The problem with it is the design is strictly for tennis shoes that have removable soles.  The AFO fits under the sole, which means cute sandals, flip flops are completely out.

Here's the thing,  I like cute shoes.  I never was a high heel gal, but cute sparkly shoes I love.  Today I went to the store in cozy flip flops and it makes so much harder to walk.   My leg gets so tired and my cane gets more of a work out.  Darn it, I want Ruby Red Slippers like Dorothy had.  Ones that can take me over the rainbow where I can be "normal" again, not to mention stylish.

I have settled for wearing Vans.  They actually have sparkly red ones, maybe I will get them.  They can be my new Ruby Reds.  I guess sometimes you have to create your own rainbows.  I am working on that. 



http://www.youtube.com/watch?v=PSZxmZmBfnU

Monday, May 14, 2012

Day to Day

It seems I am in a bit of a remission period.  I am grateful, but I can't help but waiting for the floor to fall out from underneath me at any given moment.  I have had steady improvement since my last big incident in January with the only setback being a slight gallbladder incident.

Today I spent the day cleaning.  Slowly.  I remember the days when it would only take me a few hours to clean the house top to bottom spotless.  Now I am slow and steady with frequent breaks but I am happy with that considering a few months ago it was an impossible feat.
I wonder if that person I used to be would understand the person I am now?  It seems that I would never sit still and now I sit around so much more than I can stand.  

It makes it so difficult for me and somewhat embarassing to know that I am not working.  I worked so hard to become an R.N. and I long so much to be one again.  I still have my liscense and it has been less than a year since I worked, but I miss it so much.  I look at the job openings and wonder if I will ever be that person again.  I think that doctors don't understand how much more encompassing this illness is.  It's just not the physical but everything in your life.   NOt just what they can test with their little instruments.  They can tell you that you seem better, but it's so much more than that.  Its the day to day struggles that they don't see.  Sure, today I am walking, talking better, but no way I can have the life I once had.  The life I was so content with.  The one I long for.  They are not here to see how hard I try to keep that aspiration by working on my stamina.  I can hardly do more than a few hours in the house with out multiple rest periods and it's so frustrating.  I want to be a nurse again!!!!   I want to work.  I want to have friends to talk with on a day to day basis.  I want that comradarie.  I want everything the way it was, but for now I am living day to day.
 

Monday, April 2, 2012

swimming with your head above water

When I first started this blog I must admit that I had some delusions of grandeur. I figured everyone I know would be reading this and become instantly inspired. Well that certainly had not been the case at all. I can't even get my own family members to read it so I have just decided to let it be what it has evolved into, an online journal.

For the first time in many many months, I have been feeling good. I went from using a walker in January walking only a few feet to not needing a cane in the house. My cane is still my companion once I leave my front door, but my stamina has improved so much. I am or as tired as I have been, still have to be careful about doing too many tasks. I tire very easily. The hot season is near by and I don't need any setbacks.

It is so weird to think that a few years ago I would never have thought about these things. My walk was alerts brisk and I rarely sat still. I was a working machine and nothing could stop me. That was until multiple sclerosis started to rear its ugly head.

I have decided to do a little more for my body. My biggest fear is to end up in that wheelchair or worse. I am back in the gym swimming. It is such a strange sensation because there are parts of my body that I have no control over. My left foot for example just kind of flops around and does it's own thing. My left hand, I can't control some of the fingers and the spread apart when I am swimming. This is the nerve damage that I may never regain but I am going to do my best to prevent what I can. I can tell that my left side is so much weaker as it tires out so much faster, but slowly but surely I hope to regain that strength. For now I am a work in progress and I hope that this disease will leave me alone for awhile, actually forever sounds good to me! The other thing I hope for is the courage and mindset to keep going to the gym. It's hard and I dont want to give up.