Sharing the lessons along the way…


When you focus on only your symptoms, it is a challenge to see anything else.  I learned years ago that focusing on symptoms seem to make them the only thing present in my world.

As I am struggling now with symptoms I have not had to struggle with since the onset of the illness, it has taken me a bit to remember just how I ever got through my days before.

The illness symptoms are catching up quicker than the baclofen dose increases in the pump, which has taken me a bit by surprise.  I am not shocked, but I certainly never really considered that I would be doing worse today than I was a month ago with regard to many of the symptoms.

I have not been sure exactly what to do with this information, but one thing was clear to me, and that is that I could not afford to react to it, fear it, worry and focus on it needlessly, or allow this current situation to rule my life.

Instead, what I decided to do was to sit with it.  I sat with it for about a week before sharing it aloud with anyone because at that point, I was then more ready to figure out ways to plan to work with the symptoms.

Then it occurred to me that I could probably rehab the lower body symptoms, regardless of how much they progress in the meantime, when we are back to the current dose of baclofen.

I did it before using the pool.  It is warm enough and I have access to a pool, so I am less concerned with getting back to walking my dogs myself.  I just have to wait to do this until the last scab is gone from the surgeries.

I started having to recall how I managed my upper body symptoms in the early years of the illness.  Typing and using the mouse are quite challenging and these are symptoms that no one (including me) expected the pump to help.

These symptoms inadvertently were helped, and even the intention tremor went away after a year or so, in spite of the placement of the catheter that targets only lower body areas.  I do not know if one gets that lucky twice!

Teaching online requires a lot of typing and quite a bit of mouse work.  Early in the illness, I used the talk to text software (after some struggles with the software understanding my accent) at work.

So far, I have had to cancel a couple of courses I was scheduled to teach, so this is certainly a plan that I am working toward implementing soon.

I am also eager to get back to the Homeless Emergency Project with Duke, so I am making plans toward that, whether I can drive or not after the increase in dosage next week.

Since I have no idea what is really next, I decided that it was going to have to be my choice.  That is where the last blog came from as I was sitting with the reality of my current situation.  I cannot quite envision it just yet, but I am working on that too!

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