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

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

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.