Category Archives: Chronic pain

Chronic Pain, Connection, family, frustration, grief, Healing, Migraine, Observations, Self over analysis

So not self-helpful…

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I think I may have PTSD when it comes to self-help books, books on migraines, or generally any written device intended to explain to me how to make my current state in life better.

I have been trying to unwrap why I loathe self-help lately and I have hit upon a theory. It’s a relatively new theory so bear with me but here we go.

Ours is a society of the quick fix. If we have a cold and can’t sleep we take NyQuil. If we have a cold and need to go to work we take DayQuil. What we don’t do is rest long enough for our bodies to battle the cold on their own.

Due to our quick fix mentality we have a tendency to offer solutions to the people in our lives who express problems. We rarely actually commiserate. It’s not because we don’t feel sympathy or even empathy for them, but our language of caring has morphed over time from listening and empathizing to offering solutions.

As a migraine sufferer I have had a lot of experience on the receiving end of solutions. It doesn’t bother me from friends or family but it’s the complete strangers that make me crazy. Usually when I meet someone and they find out I have migraines I get asked my entire medical history by someone without a medical degree because their fourth cousin once removed has migraines and maybe they can mention something my nationally recognized neurologist hasn’t thought of yet. It is exhausting and not a way I want to spend one of the rare times I actually leave my house to go out into the world.

I think this is why I hate self-help mechanisms. Rather than listening to each other, talking about our feelings, and creating deep, strong bonds of friendship we are offering other people’s takes on our interpretations of someone else’s problem.

Meet someone at a party going through a divorce? Offer them this book. Got a brother with MS? Here’s a book on how one person worked through their experience with it. Children being… children? Here’s a book on how to parent in a way the person who wrote the book likes most.

Now I am not saying seeking self-help is a bad thing. Personally, if you want to read books on parenting, relationships, investing, whatever medical diseases you may have, and that helps you handle life, go for it with my blessing! There is nothing wrong in my mind about seeking out information.

What upsets me is offering these unsolicited solutions to others in lieu of care.

I get it, caring is hard. It’s time consuming, it takes real listening and empathizing to truly succeed at it and none of us have the time or the energy.

Is that last part true though? Would we find consoling someone less tiring if we did it more often? Could it be we are out of practice and therefore it seems more tiring and time consuming then it truly is?

Here’s my truth: My best memories are from times when I opened up my mind and heart and joined someone in their hardships. Really joined them. Crawled down into the hole they were stuck in and sat with them for a while. I have been blessed enough to build truly amazing relationships with people because I was simply sitting with them and listening when they were having a hard day.

Sometimes the way to be the most helpful is to offer no help whatsoever.

Chronic pain, Just me, Spoons

Handcrafted love you can wrap up in…

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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.

Chronic pain, Migraine, Mygraine

Balance isn’t just for gymnasts…

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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.