ELLIE'S BLOG on Living Well with MS

I was in my garden the other day when a neighbor came around.  I had been down trimming off the dead Fairy Roses which had bloomed so luxuriously on the fence in the area where my raised lettuce bed is.  She remarked all this is so nice and as it was a very good day for me I didn't even think about my walker which I had in that area and just walked up the ramp to see her.

She commented of course on how well I was doing. I then mentioned about the new drug Ampyra my Neuro had added to my medications I take for MS. I explained that it allowed my nerve impulses to be carried over damaged myelin sheath thus allowing me to walk further etc. She then commented that it was such a shame that my sons had put in ramps for me. She went on to say that of course the ramp going like a bridge across the lawn area (which is now my son's vegetable garden) probably was ok in that you could look over and see the garden.  But she felt it was such a shame that I also had that other ramp.

This"other ramp" is the ramp that I've used with my walker and wheelchair to get down to my raised salad bed and to go out to the side of the house and out front when my walking was down.

I made no comment as I was shocked and puzzled that she would say such a thing.  Did she think I was cured and would no longer need them? Or could she see them from her upper floor windows and had been offended by them?  It was especially shocking as she always asks how I am to my family members and has stated she knows all about MS.

The morning she popped by was a very good day for me MS- wise and the weather was cool with low humidity. If, it was not a good MS day for me, hot or in the afternoon I would have been tired and used my walker back up the ramp. I might also have had to sit on it's seat and go backwards pushing and pulling  myself back was up the ramp. Or if I was really not good that day I would be using my electric wheelchair.

The wheelchair and ramps have allowed me to function at a higher level doing what I want to do. Like helping my son's painting our apt. house next door. Obviously I'm not going up on a ladder or scaffolding to do a big job.  However going down the side ramp to the side of our house I can paint the screen door if it's set up for me to manage it. And they have done that with an enclosure to shade the area. I plan to do the storm window for them too. I'm part of the family I do what I can.

  But I think the biggest thing is even if I was cured and no longer needed them I would never say it was a shame they put them in. I feel they have saved me!

  My backyard has been over time adapted for me with ramps ,raised beds, tall containers and a tall raised salad garden bed. This  has enabled me to do something that I love and which is very good for me. I was able to get out in the backyard and  garden. Without it I couldn't do it even today now that I'm better. And I would like back all those wasted years before we did adapt the back yard .

This episode reminded me again that people really don't understand.  What got me was that this is a person who seem to be so caring and supposedly knew all about MS and what I was going through.  But obviously she knew nothing as that was a very hurtful thing to say.

This is one of the frustrations of having MS you never know. So like a good former Girl Scout I have learned the best way to cope with this is "to be prepared ". You can have a bad MS day that turns into a good MS day. Or visa -versa.  So I try to listen to my body and choose the appropriate assistive device how I pace myself and rest when needed.

Actually my family can tell by what I choose to use how my walking is that day.  And if I have a lot of physical work to do I have no problem using my electric wheelchair to allow my energy to go to the project not to walking ,carrying things etc. Of course I also use my wheelchair when I go out for a long day or a long distance of walking.

And taking this further to a more universal theme with MS the inconsistency of our physical well being can be frustrating and confusing to others as well as ourselves. With our relapses, remissions, heat, fatigue and stress affecting us so strongly how can we be consistent?

We daily have to organize our life to live to our full capacity knowing that we live with a progressive disease.  Most definitely we can not let ourselves be distracted by thoughtless people.

Coincidently I just received an e-mail on the 2nd part of the MS Society's 7 part wellness program . The next one is on Maximize Mobility, Achieve Independence

 http://www.nationalmssociety.org/living-with-multiple-sclerosis/live-fully-live-well/index.aspx

Go for the full life !   ellie