Tuesday, May 28, 2013

Small Victories and a Few Sweet Moments

I have not posted to my blog in quite some time. Primarily, this is because I haven't felt well enough to put my thoughts together in any kind of formal, unified manner.  But it's also in part because, being bedridden, not much happens in my life that feels all that worthy of noting. I wake up each morning, I check my e-mail, I eat some food, I look out the window, listen to some audiobooks or the radio when able, then -- exhausted from this minimal activity -- I am forced to go back to sleep. Day in and out, year after year.

Occasionally, though, things do break from the norm.  This past winter, for example, I woke up one morning to a rare dusting of snow on the ground. As a native New Englander, this would hardly seem worth mentioning. However, having lived in Arizona for 15 years now, the sight of snow accumulated on the ground (versus merely gracing the tops of mountains) feels like some sort of magical event. Thus far, I've only seen it happen twice.

Of course, this being a desert, the snow had completely melted within a few hours of morning sunlight.

In other news, this past March, Jim and I celebrated our 10th anniversary. He sent me a beautiful bouquet filled with 10 unique flowers to represent each year. It was incredibly sweet and thoughtful of him, as always. Our relationship continues to be long distant as a result of our health, but it remains as strong and rewarding as ever.

In April, my brother and his family came out to visit. I got to see them for the first time in two years. As with their last visit, my health only permitted me to spend a few minutes with them each morning. It was just enough time for me to enjoy seeing their smiles every day, give them a hug and tell them I love them. As much as I yearned to spend more time with them, I was grateful for every moment we were able to share.

I also loved to hear about some of their adventures as they visited various tourist sites in the area.  Here's a photo of my adorable niece and nephew at Sabino Canyon, which was one of my favorite places to visit back in my healthier days (photo courtesy of my brother).

When you have severe ME (or, for that matter, even mild to moderate ME), life becomes all about the small accomplishments and the rare but sweet moments of slight reprieve.  Perhaps that's why, when I got to move from a bed and lie outside for the first time in over two and a half years, it felt so amazing and utterly liberating to me.

This was the first occasion in almost three years that I really felt well enough to even consider lying out. It also helped that we seem to have found a way to make it a bit easier for me, eliminating the need for a ramp. My parents move the lounge chair right up to the sliding glass door, so that all I have to do once they wheel me to it is plop down from my wheelchair. Getting back up is a bigger challenge, but thus far, I seemed to manage it without too huge a setback.
It's one thing to see a small patch of sky from your window every day, but it's another to have it right above you.  I tried to soak it all in as best I could.

Spring is such a beautiful time of year here, with all the colorful cactus blooms brightening up the desert.  Everywhere I looked, I saw tiny splashes of pink, yellow, red, white and orange.

I also loved seeing all the tree branches gently swaying in the wind as all sorts of different birds sang their pretty songs.  It was almost like watching nature put on some sort of graceful ballet.

My own bedroom window continues to allow me momentary glimpses of other lovely sights as well.   On one recent Sunday morning, two deer showed up and decided to lie out under the shade of one of our mesquite trees for well over an hour.  They were beautiful.

Apparently, much like cattle, deer will lie down in a secluded place to chew and digest their food. I was glad they chose a spot so close to my window where I could watch and admire them.

And that about sums up some of the basic highlights of the last six months of my life.  There were plenty of negative highlights as well, of course, but I'm choosing not to focus on those for now, as there's no sense in reliving them in any detail.  The repeated setbacks and crashes that inevitably come with this disease often can be so brutal, persistent and difficult to put into words that, as soon as they lift even slightly, one doesn't want to look back.  

Overall, my health remains the same. I am still mostly bedridden and unable to speak much more than a few words above a whisper.  I still can't stand, walk, read, take baths, watch TV or fully care for myself.   However, thanks to small victories and a sprinkle of precious moments like the ones above, I also still have hope.

Note:  After a long break, I am back on Twitter!  However, I lost all my followers when I deleted my account.   If you'd like to follow me or re-follow me, I can be found here: @DreamsAtStake


  1. What beautiful pictures (including the one of you!) I'm so glad there have been happy moments and rays of hope in these past few months. I think of you every day & send positive, healing thoughts your way. Love and light to you, my friend. xoxoxo

  2. Lovely to read your post Laurel and hear is hoping you have many more moments outside soaking up the sunshine.

  3. What beautiful pictures, Laurel! I know how much seeing the natural beauty adds small moments of joy to every day, even during the darkest times.

    Being outdoors picks me up like nothing else! I have a goal to spend at least 10 minutes outdoors every day, even if it's just lying on the deck. I rarely manage it EVERY day, but I try.

    So glad you got to enjoy seeing your family during their visit - I hope that one day you will be able to join them on their hikes and outings.


    Live with CFS

  4. Beautiful pictures as always. Especially the snow in the desert. I've never seen a picture quite like that. I'm happy you got to go outside and see the whole sky. And happy ten year anniversary to you and Jim!

  5. the snow on the cactus is so beautiful! we saw snow through the desert when we drove through your part of the world many years ago.
    it must be lovely for you to get out into the sunshine and take in the beauty of the outdoors.
    my thoughts and hopes are with you.
    cheryl xo

  6. It wonderful to hear from you Laurel and the photos are just beautiful. I'm so glad you've been able to get outside a bit. It's so restorative. Thank you for catching us up on your life. Love to you, Toni

  7. Your descriptions of what you see around you almost make me want to move to Arizona. You do a wonderful job of explaining what your life is like. I admire your courage.

  8. What lovely pictures! Thank you for sharing. I am so glad you were able to sit outside and I do hope it can become a more frequent occurrence. I just discovered your blog. I am looking through M.E. blogs to try and help pass along some information about severe M.E patient Karina Hansen. I found myself debating as whether to share it or not. I have M.E. and have had years of being mainly housebound and during the time some of it I was bedbound. However I have not had true severe M.E. so I don't want to ask you to exacerbate your symptoms. However I dislike it when people keep things from me because of my illness. I will just leave a quick summary and if you want to know more please feel free to contact me.
    Karina is a severe M.E patient in Denmark forcibly removed from her home and there are petitions circulating in support of her. I will leave you the link. Please take care and I truly wish you more good days and happy surprises out of your window until there is a cure.
    change.org petition : http://tinyurl.com/p55nxdp

  9. Laurel, I'm so happy that you were able to actually get outside for while, and see the sky overhead. That must have felt amazing.

    Thank you for sharing your beautiful desert pictures. I love the desert and it's one of things I really miss. I wish I could smell the scent of the desert in spring again, especially after a rain.

  10. Yes yes yes ! ! ! The great outdoors! Let that visit outside feed your fire, lady. We shall overcome.

  11. Wonderful you got to lie in the sun a little, I hope there are many more moments of 'outside sun' ahead for you. Again, I salute you in coping with ultra severe ME the way you do. All good wishes to you. NASIMx

  12. Your photos are just gorgeous, especially the one of the snow on the cactus - such an unusual and precious thing to witness! I'm glad you were able to spend some time outdoors. It's really amazing to have that connection with nature, even for a short time.