Tuesday, November 14, 2006

Thoughts on Head Pain, Caregivers, and then some healthy cynicism...

I've been thinking a lot lately about caregivers, our relationship with them, and other general philosophical (and dark) stuff around headaches.

I have chronic, daily tension-type headache with migraine features that leaves me incapacitated to some extent almost every day. Sometimes I am physically incapacitated, like on the days when my head and neck and back ache so badly I cannot or can barely function and just want to go to sleep. I'm often intellectually incapacitated from the strain of trying to think clearly, day upon day, while my head aches relentlessly. This constant physical and intellectual stress leads to emotional incapacitation as well. I am not emotionally resilient. I am emotionally vulnerable, short-tempered, easily hurt, sensitive and defensive. The normal boundaries stretch very thin and I feel easily irritated, easily annoyed with the world around me. The usual resilience to this hard world is gone, worn thin, and I am defenceless.

This makes life a challenge for my caregiver. While I am not physically dependent on my caregiver, I am emotionally dependent on him - for his understanding of my condition, his patience, his gentleness with me. I rely on him for comfort - comforting words and queries, concern. Despite the pain and the lack of emotional strength some days, I still manage to put on a smiley face and not go postal. Even for my caregiver, I muster a smile and an "I'm okay" when I literally feel like jumping out the window.

Recently I found myself so drained that as I stood at a street corner, a large truck rushed by and I thought about how it wouldn't be so bad to be run over by it, because then I would be free. Free from constant pain in my head and my heart. I also thought about how wealthy my mother would be from my generous life insurance policy, and how David would have the house instantly paid-off by the mortgage life insurance. The situation really would be great for everyone. Except I would be dead. Ok, so it was just the brief fantasy of an aching mind, but for a second, it really brought a smile to my face. I am not suicidal, so no need to call in the armed guard to protect me from myself. But you know that life is really crummy when a brief fantasy about death brings you a warm glow of relief. Of course, I am not wishing myself dead, but my God, how I wish I would feel better for a day or two, even an hour. No one around me knows what it's like to be in pain every minute of every day, how demoralizing it is, how spiritually tiring it is, how physically exhausting it becomes.

Rarely do I talk to my caregiver about this really dark side. We talk a lot about my headaches, he asks about them. I tell him how tired I am. He comforts me. But I try not to be too desperate and too dark with him. I try not to tell him about how each day, I have a really, really low point. I don't want him to worry too much. And I don't want him to have me committed for depression. I am not depressed, not clinically. I am just a normal person who is psychologically spent.

So my caregiver and I share this experience, but with different perspectives. For him sometimes, I imagine it is also hell. He has a girlfriend who isn't much fun. Who doesn't feel light and silly and whimsical and cheery all the time. Who doesn't feel like that at all, in fact, ever. I am cheery when I act cheery, not when I actually am cheery. Like many headache sufferers, I am an excellent actress.

I sometimes wonder how he feels about my illness. If he feels a little jilted, or if he's accustomed to it by now. Or if he simply forgets when I am acting normal. I hope he forgets, that he can just see me as a woman, and not as the well of pain I've become. Sometimes I like it that I am normal to him, because it makes me feel normal to me.

Sometimes I want my headaches acknowledged. I want people around me to feel my pain. Other times, most times, I don't want to talk about it, least of all with strangers. They don't understand, and they say stupid, insensitive things like "have you tried...?" which is my most hated phrase in the English language. When they say that, I want to say "no, I haven't tried a chiropractor...what a brilliant f*&king idea." All I say is "yes, I've tried it" and I don't add that it cost me about $10,000 and 300 hours of my life.

And I have yet to meet a person who listens to my tale and says "my God, that must be Hell. You poor dear. How do you cope?" I would love to have that response. Then I could be real and actually explain my life, my feelings, my struggle. Instead, no one ever says that. All they say is "my relative (insert name) has migraines" and then go on to explain Aunt Bertha's malady ad nauseum. That, or the old standby "have you tried....?"

Sometimes they say another fascinatingly helpful phrase like "I used to have headaches years ago and then I started (a) chinese water torture (b) sleeping with spiders (c) eating organic lettuce whilst standing on my head and simultaneously doing downward-dog, or (d) injecting myself with a litre of liquid morphine 8 times a day, AND THEY COMPLETELY DISAPPEARED!"

There is nothing less disheartening to a headache sufferer than a headache sufferer whose headaches COMPLETELY DISAPPEARED.

I know it's supposed to be inspiring, but it isn't. It's frustrating because it makes it look so easy. It makes it look like you haven't tried nearly enough things. It makes it look like you are stupid. And they are a wise old sage who, quite superiorly, defeated thousands of hours of genetically-induced torture with a simple massage.

Ok, so I am being extreme again. But you do get fed up. And just for once, I would love it if every single one of my colleagues (who look at me sadly and disdainfully and not quite believingly when I mention I have a "another" headache) would have a whole 48 hours of blessed HELL with a killer headache, like the one I had Thursday. And then they would stop looking at me with incredulity and feigned interest and contempt and just start admiring me for the incredible Goddess/Martyr that I am.

So back to my original thought, which was about caregivers. Which lead me to think about what people think about me. Which lead me to the Goddess that I am.

Caregivers. They need our care too. Maybe my caregiver doesn't need a lot of help. I am not terribly dependent on him. I am emotionally dependent on his kindness. And I can't be a picnic all the time. But I think he shoulders the burden well. Still, his life would probably be easier with someone else.
Then again, I guess I am kind of a Goddess. Or at least that's what I tell myself when things get dark and murky and I stand on a sidewalk dreaming about being run over by a truck...

Think about your caregiver. Thank them. If you ever have the energy, do something really nice for them. I know you appreciate them and I know you say thank you all the time. But really look them in the eye and tell them "thank you" again. Thank you for helping me be normal by being there for me, by helping me maintain a normal life, by loving me, flawed as I am. And thank you also for getting by without my support some days. Some days I don't have it to give you and I am sorry for that. But I am doing my best and thank you for doing your best. Thank You mostly for sharing the weight of this illness with me. Thank You.


  1. Anonymous11:04 am

    That was so very well put. AALL of it. Funny, I've been where you wre, on that street corner (same situation) and it's both comforting and frustrating, as you put it. But definitely not crazy. I heard EVERY word you said; and I, too, will thank my husband, my caregiver. He does a wonderful job. It's truly no picnic on either end! I hope ;you'refeelling better soon.

  2. Anonymous11:49 am

    Oh Terri, we have ALL been on that street corner.

    I think one of the most frustrating things with headaches, especially the kind that us chronic girls get, is that no one can see them. If you were walking around with a cast on your leg, people would be offering to help left right and center because they can SEE the cast. But because they cannot see your headaching (excpet when we let them see the misery on our faces), they forget that we are always in pain.

    The other frustrating part of chronic headaches and migraines, is that people that have an "ocasional mild headache" think that that's what we go through, the the term headache and migraine are used so often in soicety today, that people think they are light and fluffy terms and "everyone" gets them, so whats the big deal?

    Terri I feel you pain, I wish that there was something more I could do for you. Hopefully once you get settled into the new house, you will be able to relax, and maybe, just maybe a little relief will come your way, we all know you deserve it, you goddes you!!

  3. Anonymous2:02 pm

    terri -
    i have had most of those same thoughts you have. recently, in fact. in some ways, it does feel that death would be a welcome release.

    i also am blessed with a phenomenal caregiver, and i hope he knows how much i appreciate all he does. he helps me physically, emotionally, and helps me not to overwork or overdo. thanks for sharing this intensely personal and honest post.


    also, i hope you know that we (with the chronic pain) recognize you for the goddess you are in surviving and living with pain every day. we understand all too well, and thus credit you with the strength of character to live this way.

  4. matteo 812:54 pm

    Excuse me if my previous post hurted you(?), it wasn't my intention.
    You can erase it if you want.

  5. Thanks lovely lovelies for your comments! Your kind words mean a great deal!

    Yes, we are all on one crazy ride and there are good and bad days and some extreme moods and anger and all of it. But all in all, it seems we are coping, thanks to some exceptional people.

    I was joking of course about not wanting to hear about other people's headaches, or other people's suggestions. I am open for anything. The joke was more aimed at those casual acquaintances that we meet, or extended family who don't know the extent of our problems and instead of asking or taking the time to listen or even understand simply start diagnosing us or trying to FIX us. I welcome all feedback and ideas in this forum, where we are here to really listen to each other and take what we can and share what we can, with sincerity!!

    Mateo, I'm not sure what post you mean. I wasn't offended!! Feel free to post your thoughts - they are welcome. Terri :)

  6. Christine9:08 pm

    Terri, I didn't see your post until today--I got home last night in so much pain and so pissed off about my headaches that I just threw myself into bed.

    What a great post and rant--I could really relate to it. I feel the same way about people whose headaches have COMPLETELY DISAPPEARED--they only make me feel that there's got to be something wrong with me, since nothing I've tried seems to have made any difference.

    I'm glad you're posting more--I missed hearing your voice...

    Hope all goes well with your move..

  7. matteo 818:40 am

    Thanks Terri. I think It's a good idea to talk to your caregiver of your problems. If my girlfriend (currently I havn't one unfortunately...) would talk to me of her problems and I could help her, I will be honored by the fact she consider myself able of understand her. I will be glad of help her because it makes me feel good.
    I think that if two people can help each other they become very bind, isn't it?.

  8. Anonymous3:44 pm


    Great reminder to thank our caregivers. I have an awesome support system and too often I am too sick to thank them. I will make a point of doing so more often.

    Thanks again for a great post!


  9. Anonymous11:04 am

    Terri my love,
    Thank you for sharing on such a raw and emotional level. We need these windows into each others soul - they heal us all on some level.

    I have often thought of you in the past six months and what it must be like to live in chonic pain. I'm sure the nature of your work is mentally demanding. Exhausting for anyone, but more so when suffering headaches daily.

    Continue the good fight...and stay off the street corner.

    blessing your way.

  10. Wow, can I relate to this post. You are not alone, but I'm sure you know that =)