Did you ever wonder why authors tend to skip the narrative during long journeys? I guess the answer is pretty obvious: there’s nothing to tell. Unless the party gets attacked by highway men or captured by trolls, there’s really no point.
When I began this blog, I was pretty sure I was in for a long journey. I’d read enough about other’s battles with chronic pain to have just an inkling of what I was looking forward to.
Looking back I can see that I really didn’t know what it would be like to still have this headache now. I’ve gone through a huge range of emotions trying to learn to live with it. And I think I’ve done a good job. At some point I switched perspective from getting through the pain until we find something that helps, to living a full life with the pain.
So to all of you who are on a similar journey, let me just say this: We are not travelling just to get to a destination. We are meant to experience every moment of the journey. Try not to wish the time away. Let yourself, instead, find moments to savor on even the toughest of days. A hug from a loved one, petting a dog or cat, a warm bath, the feeling at the end of a difficult workout, a held hand. Life is found in the little everyday things.
I’ve had this headache for a long time, and yet I’m still making changes to my life, still adapting to the limitations dealing with chronic pain has given me. And, yes, still fighting against those seeming limitations.
Something I have to be on constant lookout for is depression. It can really sneak up on you. I recently made a lifestyle change that left me feeling depressed. I’ve homeschooled most of my children their entire school careers. One decided on public school after we had her try it out last year, and one just went on to college. That left a high schooler and an elementary schooler at home. Looking back at how this past school year has progressed, I really was not happy with the results. My kids are smart, not geniuses or anything, but capable. I really felt they weren’t getting the opportunity from me to challenge themselves. The younger one started school a month ago and is adapting well. The older one will start in the fall.
Not homeschooling may not sound like a big deal, but this has been my identity for a long time. I stopped working almost two years ago. The homeschooling community has been my only source of social activity outside of my house. Although they still value my input, I now feel detached.
I am not the same person I was just days before. Suddenly I feel alone.
This identity crisis and the disappointment I felt from not being able to do for my children something I had promised myself led to some serious insecurity and low self-esteem.
So here’s my advice to myself, and to anyone who suffers from depression due to chronic pain:
Practice mindfulness This link is to the Zen Habits website. He gives a great plan of 9 mindful things you can easily do each day.
Daily write three things you are grateful for. Or more if you choose. Happiness can be cultivated. When we are in pain, it is easy to forget the good things in our lives. By writing them down, you remind yourself to be happy.
Hug someone, or pet a dog or cat. Don’t forget you need physical contact even when all you want to do is stay in bed in your dark quiet room.
Play a game. You may not be into board games, but I am a total game geek. Even if I really don’t think I want to play, playing a game with my family makes me feel better. It helps me reconnect and feel like I am a part of things.
Last, and possibly hardest; Get some exercise. It may hurt, but your body needs it more than ever. If you have to schedule a nap afterwards, do it. If you can only manage a few minutes, do it. It may take time to work into it, but your body will thank you.
It’s been months since my last post. Not because I suddenly became well, though that may very well happen some day, but because I’ve been significantly unwell. And I haven’t wanted to focus on the headache at all. As a matter of fact, I spent the summer trying to ignore the elephant in the room and live life as though nothing was amiss.
I chose not to spend my evenings composing blog posts, which forced me to anyalyze myself. I watched Dr. Who with my family, becoming fully immersed in a lovely world of geekdom from which I was only forced to surface when there were no new episodes to watch. Instead of playing Dominion or Catan (table top games are one of my favorite past-times), I lay back and watched the rest of the family have fun. Rather than reading to myself, I listented to audiobooks. I may not have been doing the things I would normally do, but I was enjoying myself, right?
Chronic illness has a way of slapping off those rose tinted glasses and forcing you to face reality. As my headache worsened this summer, I was forced to re-evaluate my expectations of every day life.
And to ask for help.
In July I started counseling at a local practice. This about sums up what I took away from each session:
We need to have family meetings every few weeks to talk about expectations, otherwise I won’t notice when I need help.
My therapist has no idea what to talk with me about, so 30 minutes in he is looking at the clock .
I benefit more than this talking with my husband.
Learning skills to cope with pain, and talking with others who have similar issues might help, but this isn’t.
I’m not actually depressed, if my head didn’t hurt I’d be fine. Thus I am diagnosed with “mental disorder due to a general medical condition.”
Obviously we’re done here, can you recommend someone who knows what they are doing?
I have one appointment left with my therapist to close things up and see if he found any recommendations for me. I would like to find someone experienced with chronic pain and maybe a group therapy so I can hear from others. I’m pretty fortunate to not be prone to depression. I know of people who’s struggle with chronic pain is made worse by comorbid depression. Part of my reason for starting therapy was to rule this out in my case.
Feeling certain depression isn’t a serious factor for me, I am free to pursue my next course of action.
There are days when odds are my head pain and related symptoms are going to get me down. Some days I can even the odds for the day. Some things I do help me to work towards lowering the odds for the coming years, not just the coming days.
Things I do on a daily basis:
Take care in my meal choices, if I drank too much cola yesterday, I’d better watch it today.
Eat when I’m supposed to, not waiting until I finally feel hungry.
Lie down for a nap when the pain starts to creep up on me, don’t always weather the storm.
Keep the lights dim and the noise level low.
These sound like trivial details, but they add up to an altered life. How can you keep the lights dim while you expect the kids to get lessons done? How do you keep the noise level down but still spend time playing games with friends? I can’t always follow those simple rules. Life gets in the way.
While I’m busy balancing my illness and my life, there are some things I can do to help myself get healthier. While these won’t cure my disease, they may help with the severity and they may prevent symptoms from worsening or new symptoms from developing.
The things I strive to do (but may not always manage) for a healthy life:
Relaxation exercises my neurologist suggested. I’ve being doing this nightly and it has helped me to get to sleep at least.
Physical exercise, which is a big challenge. I’m not good at taking my exercise nice and easy, but my head can’t handle the pace I’d like to set. So this I am constantly struggling with.
Spiritual practice- this is one of the keys to my ability to cope. I may be doing a small amount daily, but I try to keep God always in my heart and mind.
Truly these three things are beneficial to everyone, not just a migraineur.