Wednesday, July 24, 2013

how we're going (and a bit about chronic pain)

Project 365 #192: 110710 Light At The End Of The TunnelWell, friends, it feels like we've just passed through a very dark tunnel; but we're beginning to see the light at the end (cliche, anyone?). Hope feels fragile and uncertain, like we can't quite put our weight on it. But I am so thankful to God for his mercy to our family.

Ben and I visited the OT at the hospital last week, and were actually told - get this! - that we might be seeing too many doctors, and did we want to stop seeing her? We didn't (she's wonderful); but we did put off our next appointment for a month.

Picture me mentally dancing around the room at the thought that we might not have 3-hour-round-trip doctors' visits most weeks, and sometimes twice a week, this term!

If I'm tempted to hopelessness - and I am - I only have to compare the start of this term to the last one. It was a black dog of a term, take it any way you like. Endless trips to doctors and the hospital. Ben still missing heaps of school. By the end, I was battling pretty intense anxiety. In God's grace, I'm recovering; and Ben is looking healthier and stronger.

Looking back, here were some turning points:
  • Ben's diagnoses after a few years of illness: migraines (2012) and chronic daily headaches (2013)
  • a phone-call I made to the paediatrician late last term, when I said, "This can't go on. I think Ben's just going to have to go to school even when he's feeling horrible!" and she said, "Yes." Hard, but good.*
  • attending a pain education clinic and reading a book on chronic pain. I now understand what we did to contribute to this situation (ouch!) and what we can do to help Ben get better.
  • a meeting with the hospital psychologist in the final week of last term, when she said, "You need to stop asking Ben about his pain." I did, and it helps him to focus less on his pain and more on living.
  • 2 weeks holidays and lots of exercise - soccer, ropes' course, boogy boarding - helped Ben regain strength and energy.

Here's what I'm learning about chronic pain:
  • Chronic pain can happen when you respond to ongoing pain as you would to acute pain.
    • You rest, so your body becomes weak. 
    • You protect the area, and your nerves become super-sensitive. 
    • You get help, but begin to rely on others. 
    • You avoid danger, until everything looks dangerous. 
  • The result is that your whole system becomes oversensitised to pain. Your nerves grow extra sensors. Your brain lays down pathways that reinforce the pain. Your nervous system becomes overly responsive to stress. Migraines often turn into chronic daily headaches this way.
  • What's needed is to reset your system. Your brain needs to learn new pathways; your nerves need to be desensitized; your body needs to be strengthened. Normal function generally returns before pain decreases. A slow process!

Here's the plan (otherwise known as "how to deal with chronic pain in children 101"**):
  • get on with life despite the pain, slowly and steadily, as you are able. Don't focus on the pain (and, if you're a bystander, don't ask about it); instead, do things that distract you. This turns down the brain's awareness of pain.
  • set achievable individual goals - e.g. a 2 hour visit with friends every weekend - and build up slowly
  • pace yourself: 16 hours playing with your brothers on the weekend is great, but you need regular short breaks to rest, or you'll overload your system
  • gradually work your way back into normal life as your system re-adjusts - we're planning Ben's first full day's school next week (now put off by a week due to migraines - such is our halting progress!). By the end of the year, our goal, God willing, is for Ben to be doing full weeks.
  • get daily exercise: swimming, walking, strength training ... Some kids have to start by walking to the door and back again. Thankfully, we're further on than this, but it takes perseverance and commitment.
  • learn to do relaxation exercises, because anxiety contributes to chronic pain. Ben dislikes these, so we're still working on this one!
  • learn to read your body, manage your stress, and know when you need rest. Ben is getting very good at this.

So we start this term with new energy and new hope. Last week, Ben did 4 1/2 hour school days, as planned, though he was in pain every day. This week a full-blown migraine shortened his days, but he's making it to a bit of school each day - a great achievement. If he goes downhill, we'll rethink things. But at least we now understand what is happening and what to do.

Thank God for his mercy and his grace, and keep praying for us. God hears and answers your prayers.

* If this sounds remarkably like advice I received many months earlier, let's just say that it takes time and experience to realise just how much pain it's possible to be in, yet for it still to be the right thing to go to school.
** Disclaimer: I am not a professional, and this is not medical advice. You can find a good practical guide to some of the current thinking on chronic pain at MoodJuice.


Karen said...

Jean, you're amazing. I know you've had some dark moments with all this, but it's so good to hear that some light is finally showing. Such an answer to prayer for you guys.

I think the change in mentality from Ben's condition being "something that will get better" to "something you have to learn to manage for the rest of your life" is a big shift for people to make, and it's something I've learned over years of working with big and little people and their families. Most of what I do I see as coaching people through this change and adjusting to a new pattern of thinking and doing things from this different mindset.

I loved reading your positive words about your OT too. It always gives me a warm feeling inside when people say nice things about OTs! Reading between the lines of what she said, and what I would be thinking as the professional in a situation like this, she must think you are doing fine on your own if she's offering to reduce the frequency of your appointments!

Brad Hansen said...

Jean - This was most helpful! It parallels our situation exaxtly. And it addresses the hard things our son Kirk is needing to learn. Could you re repost this on The Briefing so we could print out a hard copy? Blessings.

Jean said...

Thanks, Karen and Brad.

Brad, it's good to hear this was helpful. I'm not sure it's appropriate for the Briefing, but you should be able to print it from my blog using "File Print" or at least cut-and-paste into Word and print it out that way even if there's no print link on screen. (A book we are finding incredibly helpful is Lonnie Zeltzer's "Conquering your child's chronic pain"; it would be relevant to any age group.)

Karen, OTs are now some of my favourite people! :):):) So much so that I'm encouraging my daughter to consider it as a profession, and she's keen (amongst many other exciting possibilities!).

And yes, it's good to shift from "maybe we'll wake up and this will be gone" to "here's what we need to do to manage this and make slow-and-steady progress." Although it's probably not a lifelong condition, at least in its current, severe form (it is often associated with the teen years, and CDH do respond to this kind of treatment) but certainly lifelong lessons and self-management.

Jean said...

Oh, and Brad, chase up I have a list of other references if you need them, but that book/website have been the most helpful.

There are chronic pain teams in most hospitals: have you managed to get your son in to see them? It might be worth getting a referral. Pretty much all I wrote came from the pain team at the Children's.