Archive for the ‘Managing Emotions’ Category

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How Food And Family Help To Cope With Chronic Pain

June 3rd, 2009 by Julia

Food and family feed the soul.

Food and family feed the soul.

I’ve been putting off setting up my daughters medication box for a few days.

I think the reason I put off focusing on the medications is that while I am doing it I have to really concentrate on each pill, the dose and the regularity.

I worry about the effect the medications are having on her and I wish she didn’t have to take them.

The medicine box ritual also forces me to focus on the pain she is managing and I know I try to block that out and pretend she is a normal teenager.

As the winter and the rain have set in our household has had it’s share of seasonal viruses.

I have a big chicken stock bubbling on the stove as part of my response.

I have a recipe that includes sea vegetables for extra minerals. It strikes me that there is a long tradition of women brewing good food to get their families through the winter.

A few nights ago we had my husbands parents over for dinner. I made a decision to cook a season vegetable dish that took some time. I served this vegetable gratin with roast lamb and potatoes.

There we three teenagers at the table and the noise of several conversations filled the room. The baking dishes stayed on the table so people could serve themselves second helpings.

I understand that something really important happens when there is a lot of good food and the family gathers for a feast.

We strengthen our bodies and our souls. We remind ourselves of the tribal strength of family. After a big meal like this I feel we travel better as a family. We are anchored and reassured and able to face moments we would rather not.

So this morning I will attend to the pill box and watch the anxiety come and watch it go away again. Then I will make soup.

Soup photo by lotterymonkey at Flickr Creative Commons.

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What Does Coping with Chronic Pain Look Like?

May 21st, 2009 by Julia

2277017169_2cd1182cbd_mI recently attended a workshop by the psychologist and trauma counselling specialist Michael Tunnicliffe.

He said that he is sometimes called to events like bank robberies, mine accidents or shootings where people are shocked and distressed.

He told us that usually he is taken to the person showing most outward signs of distress. This person may be sobbing and yelling. He explained that there may be other people from the same event sitting staring ahead in silence.

In our culture the wailing folk are regarded as not coping and the silent are considered to be coping well.

Michael then carefully explained that the sobbing person is already adjusting and adapting to the reality of what they have just experienced. The silent person might be numb, not feeling anything, as if the event did not happen.

He told us that he saw his job as helping people who get stuck at some point along the path of adjusting and adapting to their new reality.

I am bringing this up because people have often told me they don’t know how I cope. They tell me this because I am acting normally and therefore labelled as coping well.

If your child is suffering on a fairly regular basis you can suffer a chronic fatigue and get numb and detached. Our culture rewards this by labelling it as “coping well”.

We run the risk of tuning out to our child’s reality because we feel powerless and overwhelmed.

I think kids are remarkably able to adjust to what they have to deal with.

One thing they do need from us is the ability to be present, to share how things are for them. That doesn’t mean doing or solving, that means sitting with the truth of how things are whenever we can.

I think coping well is not being numb and detached from what is happening in your life. Rather I think it is feeling as much as you are able, when you are able, and getting help if you get stuck along the way.

Photo courtesy of timcaynes at Flickr Creative Commons

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Important Message for Parents of Children With A Chronic Condition

May 15th, 2009 by Julia

Pay attention to your own needs - self care is a necessity not an option

Pay attention to your own needs - self care is a necessity not an option

Do you think of the needs of your child before you think about yourself? Do you find it hard to make time for what is important to you? Do you find yourself being grumpy more that you want to be?

My friend told me about a dream she had. It struck me that this story contained a universal message for each of us. With my friends permission I would like to share it with you.

In my dream I have a beautiful beautiful baby and I’ve been very busy
working and caring for family. One day I pick up my baby and it is floppy
in my arms. I realise that my baby is nearly dead. I feel so guilty and
ashamed because in my busyness I’d forgotten to feed my beautiful child. My
baby does not cry or complain, it is passive about its own needs. My baby is
not dead – it can be fed and revived. If the child had cried, fussed or
yelled about its needs, it would have a better chance of survival. A wise
woman told me the child in my dream is me. I now understand that if I get
too busy to nurture and care for myself, I will quietly die.

All parents are busy. If your child requires doctors visits and physiotherapy you will be very busy. Your concern about your child might drive you to even greater heights of activity. People sometimes even say – it helps if I keep myself busy.

The problem is that we might not consider our own needs as a priority in all that activity. We might not even know what our needs are.

Some parents might be able to get away with putting themselves last. Parents of children with a chronic condition just cannot afford to.

We have to schedule time to refresh our spirit in whatever way works best for us.

As the airline staff tell you, “Put your own oxygen mask on first, then assist your child.”

I am not saying this is an easy thing to do. I think it is particularly difficult if your own parents did not model doing things just for themselves.

You might experience feelings of guilt, selfishness or anxiety. Notice those feelings and make attending to your own needs a priority anyway.

As the dream so elegantly tells us – on some level getting this right is a matter of life or death.

Photo courtesy of kudumomo at Flickr Creative Commons.

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Ice Breaking: Assisting Children During Hospital Stays

May 9th, 2009 by Julia
Having your own mug and some nice tea can be comforting.

Having your own mug and some nice tea can be comforting.

Whether you are a constant bedside parent or a visit after work parent you can do several things that improve the hospital stay experience for you and your child.  I don’t always have the energy to do these things but I know they work.

Supplies
Leave you and your partners favoured coffee mug along with your favourite teabags or coffee in a bag in your childs cupboard. You might also bring a plastic container with your preferred biscuit or fruit cake, nuts etc.  Take time to make yourself a  good cuppa and sit back and enjoy it. Remind yourself to relax.

Learn and Use Other Patient Names
All the kids have their names on the wall beside their bed.  As you enter and leave the ward say hello and goodbye to the other kids by name.  ”Hi Michelle” ” “See you later Jo”.  I have found that this simple process helps the kids learn each others names and acts as a bit of an ice breaker on the ward.

Learn and Use Nurse Names
I use the staff names in front of my child.  If a nurse delivers a medication, I notice the name tag and say, “Thanks Kevin.”  It encourages your child to do the same.  Kids who are polite and appreciative are more likely to be chatted to by staff.  This also means your child is more likely to ask for assistance if they need it because they know who their nurse is.

Acknowledge Other Parents
It is easy to acknowledge other parents without being intrusive.  Most parents are very tense – don’t be put off – be friendly anyway.

  • If you are making a tea, offer to make them one too.  Some people find it hard to leave their chid.
  • When you have finished with a magazine or newspaper offer it to another parent.
  • If you are off to the shop ask around and see if anyone wants supplies.
  • Give a nod of acknowledgement as you come and go from the ward.

I have found the process of learning names and acknowledging other parents makes an important difference.  Somehow it makes it easier for other parents to comfort or assist your child when you aren’t there.  This might be a simple thing like opening the high security plastic in the little cereal boxes.  It might be something major like noticing your child is distressed and alerting staff.

Coffee mug photo courtesy of radiant guy at Flickr Creative Commons

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Chronic Pain Management – Small Words Give Great Hope

May 5th, 2009 by Julia
A few small words can keep hope alive.

A few small words can keep hope alive.

Sometimes our daughter has had rough patches that lasted quite a while.

During such time it can be difficult for all of us to remember that eventually things will get better.

I bumped into John from the physiotherapy department one day at the hospital. I surprised myself by saying how bad things were.

He said, “Look we see it such a lot here. Kids come in and they look awful. Down the track things are fine again. We see it so much – we just know they are going to get better soon. It is so much harder for parents because they don’t have that experience to draw on.”

I carried his words home with me like a precious jewel I’d found on the road.

One day my daughter asked her doctor, “Will I ever be well again?”

“Yes”, he replied with great confidence, “this time next year your life will be about something other than being sick”.

What a difference a few words can make. They help keep hope alive when difficult times go on for too long.

Wonderful photo thanks to HuaTongOversea at Flickr Creative Commons.

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Parenting A Child With Arthritis – Some Struggle Is Healthy

May 5th, 2009 by Julia

The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.
Scott Peck

If we step back kids can feel their own strength.

If we step back kids can feel their own strength.

Most of us understand that it is only through some struggle that children learn and grow.

If you protect them from too much they are unable to develop strength and judgement of their own.

I think it is harder to remember this if your child has an extra layer of suffering in their life.

As a parent I can’t take away her pain. So maybe I am a little too keen to step in to remove discomfort when I am able.

Parenting is hard.  Parenting a child in chronic pain is even harder.  There is such a temptation to try to make up for all the pain.

So I have had to learn to ask my daughter to do her house jobs even though she is in pain.  Like any normal teenager she won’t want to do them.  Like any normal teenage parent it is my job to insist.

It all sounds so obvious now but I have found this difficult to get clear along the way.

I’ve also learnt that the best person to solve my daughters problems is my daughter. We might listen and make recommendations but she is the one solving the mystery of her own life.

Photo courtesy of zenera at Flickr Creative Commons.

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The Art of Being Angry When Your Child Is In Chronic Pain

April 29th, 2009 by Julia
Dogs in pain will bite people they love.

Dogs in pain will bite people they love.

As a child growing up on a farm we had a lot to do with cattle dogs.

If ever one of the dogs was injured it would take up a position in the far corner of the shed or under the house.

To help the hurt animal you first had to get close. You then had to avoid being bitten.

I learnt the lesson very young. Dogs in pain will bite even those they love because they are frightened.

I have caught myself being a bit of a wounded cattle dog on occasion. It can be heart breaking to watch your child in pain and not be able to take it away.

The stress and uncertainty can turn this mellow Mum into a snapping snarling Dragon Woman.

My friend Judy has this quote on the back of her toilet door.  I couldn’t help thinking how true it was.

Anyone can become angry – that is easy, but to be angry with the right person at the right time, and for the right purpose and in the right way – that is not within everyone’s power and that is not easy.
Aristotle -Ancient Greek Philosopher Scientist and Physician 384 BC-322 BC

Have you noticed yourself being angry when you are really just worried about your child?

Kelpie named Indy courtesy of Michelle Joyce at Flickr Creative Commons

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Advanced Fear Strategies for Late Night Worriers

April 26th, 2009 by Julia
Late at night, when you are worried, things can seem a lot worse.

Late at night, when you are worried, things can seem a lot worse.

As you may have experienced, the wellness of children with rheumatology issues can fluctuate dramatically from day to day.

One night I was particularly worried. I emailed a friend.

Kay knows a lot about the anxiety that health issues can cause.

She is also highly trained in psychology and counselling.

I found her reply comforting.

Advanced Fear Strategies.

No matter what we do we can’t side step suffering. It is the fabric of the universe along with hope and compassion and love and hate and desire.

We live with the delusion that we are meant to be happy. This is not true. We want to be happy but we aren’t meant to be anything.

You are weaving your life with the colours that you have. Expect nothing. The past and future dim the lights. The worst you fear may never come true, the best you hope for may be the least of it.

Today you are scared and sad. Of course you are. Another day you will have hope and happiness. Of course you will. You already know this.

A clear head doesn’t mean hope and happiness – it means knowing what you are experiencing in the now. You already know that. You already are.

Watch the pain come and watch the pain go. Attaching to it takes all our energy – you don’t sound as if you have a lot to spare right now.

Life isn’t linear. We run, we peak, we plateau, we stall, we slide, we swim around in circles. None of it means anything in terms of outcome. We are duped into believing that it does. Let that go.

Breathe. Watch the sun set. Remember insignificance.

And remember – after enlightenment – the laundry!
K.P.

Have you found some words of wisdom you would like to share? I would love to hear from you.

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