THE ODDS (Debbie Does ALS)


Mother's Day 2010, plus

You remember this, don't you? Yes, yes -- twisted beyond all recognition, isn't it? However, if you know me you know I am also twisted (and, ha ha, these days in more ways than before). Imagine my delight when my eldest daughter presented me with a gift of the utmost twistedness:

I seriously doubt if anyone will appreciate it as I do, but I love it.

From Becky I got some lovely scented oil and reeds, since I am unable to light candles. Cecilia gave me a thoughtful and sentimental card, something she's not always inclined to do. We had a lovely day, a lovely brunch -- Mother's Day is always very special to me.

I was remembering last year, our New York trip. When I think back to how much walking I did, I am amazed at how much has changed.



Seventh: My stupid feet look like sausages. I don't understand why they decided to swell just at this moment, but they did and they look and feel awful. Putting my feet up does not seem to help. I wonder if this is something that goes along with reduced leg function.

Eighth: This week is my last week. While I am increasingly frustrated at the challenges I face doing my job, I am not looking forward to leaving. I have a few personal projects I am going to tackle but I will miss the interaction with the people in my office. I'm going to have to figure out a way to get out several times a week so I don't go stir crazy.

Ninth: The cotton sheets are back on the bed and work exceedingly well with the bed wedge.

Tenth: Quads are cramping like hell. Totally, totally sucks.

Okay. No more enumerating. I'll lose count, you'll lose interest, it's a no-win situation.

I have a new shower chair that is higher and has arms. It fits nicely into my shower and gives me a more secure perch. I am able to stand on my own and exit the shower with only a little help. I remarked to Jenny this evening that I thought we'd found a nice workable system. She agreed, but reminded me it was only going to work until I got worse. Twisted me laughed at the truth of this.

I am going to get worse. I'm already worse. The inevitability of this sometimes stops me in my tracks and breaks my heart. Pollyanna and her perky platitudes desert me and I'm left looking at swollen feet and ugly hands. This past week was particularly difficult, hence the lack of posts. Leaving work, filling out forms for all manner of benefits, saying goodbye to what was...I've shed quite a lot of tears. Practical me hasn't quite regained control but I am working on it.

Anyway, happy Mother's Day to everyone.

No comments:

Twitter Updates

    follow me on Twitter