This is one of the excellent submissions for our December contests.

Hi, I’m Kathy.  I live in Australia with TMJD (jaw pain) and daily headaches, which have been severe since 2002.  I also attempt to hold down various full-time jobs.  I hope you can benefit from some hard-learnt wisdom I’ve acquired along the way.

1. Look at your environment

Home
Take a look around and see what you can change that will make daily living easier for you.  Have you got a supportive bed and a comfortable pillow?  I found that just changing to a new mattress and pillow made my sleep a lot better.  Have comfort items in easy to reach places for when your pain levels are bad.  Make sure that the ice packs are in the freezer, and you have a dark, cool place to retire if possible.

Clothing
Do you have easy-to-care for clothing, which can be wearable without a lot of ironing and fuss?  Importantly, buy clothing that’s comfortable.  There is nothing worse than being in pain and walking in uncomfortable shoes.

Work
Look at your desk – is the desk height, screen and chair at the correct levels for comfort?  Is the commute too long?  If so, can you find another job closer to home?  Does your work offer flexibility to work from home?  Do you get adequate breaks?  These things can have a massive impact on how much pain you have.  Work can be difficult when you’re in pain.  Try to plan your day around the difficult periods.  For example, my pain is worse mid-afternoon, so I complete as much work as possible before this time.

2. Acquire allies in medicine

Get a General Practitioner (GP) who, if he/she doesn’t understand your condition, will follow the plan designed by a specialist.  It can be tricky to find specialists if you have something obscure.  TMJD is considered a dental specialty in Australia and isn’t well covered by Medicare.  My GP really didn’t know what to do, but a regular dentist referred me.  You may also be able to locate good allied health practitioners through your pain clinic.

3. Things I have learnt whether I liked it or not

Have a plan for the day.  A simple goal that you’ll strive for.  It can be simple or complex  – it doesn’t matter.  This gives you a reason to get up in the morning and makes you feel good when you achieve it.

Try to make the pain smaller and less important in your life, so it dominates less of your day.  Focus on doing the stuff you wish to do, rather than what the pain demands.

You’ll be tired.  Bone tired and weary a lot.  No one ever warns you of this, and you’ll find every little task that much harder.  Try to pace as much as you can and not be too hard on yourself.  I spent years pushing and punishing myself for not living up to expectations, but this did nothing but make me miserable.

If you can do so, work.  It’ll boost your self-esteem, give structure to your day and pay for expensive dental appliances.

Expect work not to understand nor care how much pain you’re in and how hard it is to do the job at hand.  Be prepared for the worst.  Remember, work is not your family and won’t give the same concessions.  You have every job for a season.  Work at it as best you can for that season and then move on.  Leave the failures behind and taking your valuable experience with you.  Don’t give up!  They’ve sacked me twice and I’m still very employable.

4. Plan for hard times

Have an action plan with adequate resources set aside so that you can cope or retire with minimum stress.  At work, leave instructions for a substitute.  Keep lists and important dates on a notice board.

Think ahead about how you could get home if a headache strikes.  Could you call someone to pick you up?  Otherwise, keep taxi fare available.  Have some meals pre-made in the freezer, or have simple ingredients for a dinner.

Try to make life as easy as possible while you feel bad.  Keep a supply of medication on hand.  There’s nothing worse than running out of your painkiller and having to spend hours in your GP’s waiting room with screaming children.

5. It’s really hurting – what should I do?

First, don’t panic.  Take a moment to take a deep breath and then start with some of the things you know may help.  When the pain is at its worst, remind yourself that it won’t hurt like this forever, and it’ll probably improve as you put the strategies into place.  Remember that this is the hardest thing you’ll ever have to do.

If your pain doesn’t improve, dig your heals in and try to endure as best you can.  If nothing helps and you decide to go to the ER, take any letters or reports from your doctor with you.  This may help the ER better help you as well as believe your reports of pain.

6. Finding peace with pain?

Finding peace with your pain may be difficult.  After 8 years of violent headaches, I’m still shocked and appalled that they can continue every day without ceasing.  It’s ok to be upset about this.  I’ve found it takes a long time and some significant pain relief to pull your life back together and be a little bit normal.

There’s a fallacy in pain medicine that a good attitude will make the whole pain experience better.  I’ve found that a good attitude makes doctors feel better.  I find I can keep it up for short periods of time while I have to, then I spend time crying alone.

Never underestimate the power of hope.  Let’s face it – sometimes this is all we have left.  But there is hope.  Every new day is a new start and a new opportunity to try again.  Hope is not positive thinking, or wishing.  It’s a longing, a waiting for things to be different.

It’s important to remember that we have a Father in heaven, and the time is not lost to pain.  It’ll be given back to us who love Jesus and follow him in eternity.

7. Find something that gives you joy

Do it often.  It can be as simple as sitting in the sun.

I hope this helps a little bit,
Kathy

Thanks so much to Kathy for taking the time to share so much advice and hard-earned wisdom!

Grand Rounds, a medical blog carnival, is published this week at The Covert Rationing Blog.