Handcrafted love you can wrap up in…

Being disabled comes with a wide range of emotions every morning. Today, for example, was exchange day, the day I hand my children off to my ex-husband for some much needed Daddy time. In general, I love having the uninterrupted thoughts that come with child-free time, but today I found some loneliness setting in with my solitude. When my children left they took with them the constant needs and demands that make it easier to forget that I am as sick as I am. As the quiet settled in around me my mood began to sink and I felt the potential spiral that is depression wake up and take notice.

Usually the best thing for me to do at times like these is get moving on something low energy but useful, like making the bed or folding laundry. As the dog had done her hurricane Penny act on the blankets, crawling to the exact middle of them and turning around and around until they are a tight spiral of warmth around her, I decided to make the bed.

I am so glad I did.

I am blessed in this life to call two excellent quilters friends. One is also my mother-in-law so I also call her mom. In my life I have been gifted with gorgeous, warm, hand-made quilts from them. Today I have three of them on my bed. One, from Mom, is a warm flannel shag quilt that she gave Dan. It is rarely off our bed. Another is a gorgeous batik quilt Ellen made me. The last is a smaller rainbow comfort quilt mom made to cheer me up when my headaches are bad.

As I smoothed out the wrinkles in each lovingly made layer of quilt on my bed my mood began to lift. Here, under my fingertips, was proof that I was loved. That two people cared so much about me that they would spent countless hours and money to make comfortable, beautiful reminders of their support. I can literally wrap their love around me every time I feel the slightest bit alone.

I hope quilters know how much the time and energy they put into their creations means to those of us who cuddle underneath them on cold days and warm, not just our bodies, but our hearts.

Thank you Mom, thank you Ellen. I am so blessed to have you both.

Balance isn’t just for gymnasts…

One of the hardest things for me to do is manage multiple days of activity. I usually need a day or two of rest between super busy days or I need to do only one little thing each day that drains my spoons and rest to save up for the next day. Of course knowing this doesn’t stop me from occasionally over-scheduling and looking at a coming week with activities and events every day and night. I am not the best at time management yet and I am even worse at turning down opportunities to see people I miss or do fun things.

This week had a lot of activities. They were wonderful activities and I enjoyed them but by Friday I was paying for my spoon spending excesses. My headache was so painful I thought I might have to go to the ER even though I know there isn’t much they could do other than shoot me full of drugs, even though the ER usually makes me feel worse due to the bright florescent lighting and loud noises. (Especially all the beeping machines. I hate beeping machines.)

I regretted my mismanagement of spoons because it meant I had to skip seeing Sweeny Todd with Dan. I have the hardest time canceling on events, especially when we had to pay money for tickets. I felt so horrible that we were not going to be able to go to this event we both wanted to attend so badly. I cried for the better part of an hour and tried desperately to summon a few extra spoons so I could make it but going simply wasn’t going to happen. I was curled up in tears in my bedroom because it hurt so much to simply exist that I kind of didn’t want to do that anymore much less anything as complicated as putting on fancy pants and going to a musical.

Dan is wonderful about these things. He offered me nothing but love when I told him we would have to cancel our plans. With teary eyes I told him how sorry I was to disappoint him and he replied with “I’m not disappointed, I’ve got the girl.” He brought me ice and helped turn the evening into low key time together. I am envious of his ability to remain calm and accepting. I felt like a sullen child who is told their playdate canceled due to flu, unwilling to accept the loss of my fun with aplomb and instead pouting in furious but ineffective mutiny.

I’ve learned that his boundless acceptance of my limitations is the most amazing gift on Earth. He never makes me feel that my chronic illness is my fault, or that there is something I should be working harder at. He always treats it like something that we need to work  through together, something that is part of me and is somehow therefore precious. I have no idea how he manages to have so much patience when I still rail against my limitations but I am desperately trying to learn from his example.

Today I am still suffering the aftershocks of so much activity. My headache is forcing itself into my thoughts and activities with wild abandon, making concentration and focus difficult. I shall have to rest a goodly portion of the day and start picking my scattered spoons back up off the floor.

It’s a constant lesson in self-acceptance and self-forgiveness, this daily struggle with chronic pain. I desperately want to be the superhero I now realize I once was but I am learning to accept the me who is shouldered with this burden. I am starting to see that I still do amazing things, even though I times when I can’t do much of anything, and I am hopeful I will start to feel as fulfilled working within my limitations as I did before they arrived.

It’s a difficult balance to strike. Most of us don’t realize our energy really isn’t boundless until our bodies force us to set limits on our ambitions. I know I thought I would have far more time to do everything I wanted than I have. I never gave a thought to not being able to work full time, parent full time, partner full time, have a dazzling social life, and donate oodles of time to charities that matter. Now I am impressed with myself if I can shower, make and eat food, put on pants, and do something in addition to these basic life skills. (Grocery shopping for the win!)

So today I will rest and borrow some patience and forgiveness from my husband until I can find it within myself. I will enjoy the sound of birds outside my window, the feel of the cat in my lap, and the warmth of the dog by my side. I will gather up my spoons and ready them for another attempt on the outside world, an attempt I will make another day.


The Art of Pain…

Every morning I wake up and have to force myself out of bed. It’s difficult because I know most of the time moving around and doing something is going to distract me from my pain but I also know doing too much will tire me out a lot.

I have found getting lost in an art project goes a long way to bridging these problems. When I make jewelry or a display piece or paint I am distracted enough that I reduce my discomfort without spending all of my spoons.

Yesterday I spent a few hours working up some new hair pins for display at The Cutting Edge Salon:


Today I am trying to climb out of a pretty high level of pain so we’ll see if I can do any fine work. I may just glue paper onto canvas to create some displays for my upcoming show.

Sometimes the best I can do is as basic as paste paper here, cut paper there.