Category Archives: Mygraine

The Art of Pain…

Evening came and went and whilst my love was sleeping the creativity I sought all day long surfaced in a rush. Sleep became impossible and I gave up trying when evening turned to night. In the quiet darkness of my house I crept to my desk and turned sleepless discomfort into shiny things. I found comfort in the act of shaping metal and pairing stone.

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The work is quiet and takes little physical energy, though it can often leave me exhausted if I do too much. I find sleep again after a few pieces are finished, my former restlessness replaced with satisfaction.

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 Bell Jar…

BellJarMigraineSylvia Plath wrote “How did I know that someday―at college, in Europe, somewhere, anywhere―the bell jar, with its stifling distortions, wouldn’t descend again?”

I understand exactly how she felt.

The doctors don’t know what causes my headaches. I spent 12 days in the best hospital in the nation for headache treatment and we are no closer to knowing why I get them. Is it hormones? Stress? Food? Nighttime teeth clenching? Pressure changes? All of the above?

I lost four months to my headaches when they were at their worst. Four months of not working, not going much of anywhere. Four months of distance in friend groups and business relationships. Four months of earning no income, not volunteering, and generally not being me.

Now I am better, kind of. I am back to work a few hours a week. I am up to camping for a few days at a time and able to table an event here and there. I can contribute. However, I walk around on tenterhooks, uncertain whether or not I am going to be able to continue this pace or if I will suddenly turn bad enough to have to stop working for four months and spend another 2 weeks in the hospital. I live under the possibility that one day my own bell jar will descend again.

I don’t drive much precisely because I never know if, once I have gotten somewhere, I will feel well enough to drive back. Will I get to a restaurant to meet a friend only to have to send someone for my car in the morning because my headache upped it’s game and rendered driving impossible or will I be able to be out for two hours without any negative consequences?

This past week is a perfect example. I felt great. I gardened, I cleaned, I cooked. I spent time with the kids. Then the 4th of July hit. Suddenly I had to cancel my original plans and find another way to celebrate. I took medication and saw the doctor and this morning it was a little better. Then this afternoon it got worse. I spent the rest of the day generally in bed resting waiting for it to calm the hell down.

Three not so great headache days in a row and I am facing the fear that I will fall back into that hellish place I awoke to in January.

I have lowered my work load and pruned my volunteer efforts. I chose two organizations to stay working with and dropped everything else. I can handle a couple days of work a week. I have to try to succeed at this. If I give up and just wait for the problem to go away I will spend forever waiting.

I take my medication and see my doctors. I eat right and exercise. I sleep. I have built in rest periods in my week to replenish my energy levels. I am doing what I can to make this work.

I just wish there was a way to do it without having that bell jar hanging over my head.