Thursday, 28 February 2013

Facing your fears

I'm a stay at home mum to Miss M.(aged 3).  I love writing, gardening and making things.  We have recently moved to Auckland.Prior to living in Auckland I ran a support group for parents of allergy children and spoke to groups in the community raising awareness of allergies.

By Sarah,

We’ve just come home from our first visit to a new playgroup.  I smiled to myself when Miss M.(aged three) sat not touching her morning tea, waiting.  She’s not used to sharing food and it was not until I gave her a silent nod that she realised it was ok to share.  She piled her plate high with pop-corn and fruit with no intention of eating it, but loved the opportunity to use the tongs and share.

Two years ago, I never dreamed that we could take her to a play group.  Miss M. at age one had allergies to: wheat, dairy, soy, tree nuts, eggs, sesame, banana, she was salicylate intolerant (most fruits) and had full body eczema.  She had anaphylaxis at three months and again at six months.  She is still allergic to tiny traces of allergens.  Today the eczema has almost gone and she is allergic to dairy, eggs and tree nuts, shellfish she has environmental allergies and asthma. 

Sometimes this is Miss M’s allergy journey.  And, it is also our allergy journey as parents.  My journeys could be aptly named: 

- The crazy experimentation with food journey that enabled my child to love food. 
- How to advocate for your child journey when eczema and allergies seem so confusing. 
- 100 ways to stop your child from scratching journey.
- How to stay positive and manage the allergy stress journey.

My survival lifelines in managing Miss M’s allergies and getting to where we are today, has been:

1. A doctor and dietician who I feel really comfortable with.
2. A network of parents who are going through the same things.
3. Talking to a psychologist who specialised in coaching families with chronic conditions.

I have met so many parents who not only have to manage allergies day to day but also have to manage their own very real fears. After watching my three month old (first time parent) foam at the mouth and go floppy in front of me, and then at six months old have another severe allergic reaction where she: vomited and became unconscious, I was terrified. 

The initial fear starts when you know something is wrong but it is not quickly validated by your doctor.  Fear grows because the diagnosis and initial treatment phase is not always clear.  Reactions progress fears.  Being handed an Epi-pen or medication might seem like it should alleviate fear, but it often doesn’t.  Stories from well -meaning mothers incite fears.  Not knowing what an allergic reaction might look like or if the test results are ‘actually true’ lend itself to fears.  Fears of the Epi-pen not working or the fear you might use it wrongly can trouble you.  I not only feared allergic reactions and anaphylaxis, but had so many dreams of being separated from Miss M. where I was not able to protect her from a well-meaning person who might give her food or a situation where we might not be close to medical help.

I knew I had to seek help.  And so thankfully I found a psychologist who I could easily talk with about how to manage my fears and stress.   I would encourage you if you are new to allergies or if you are an old hand to make sure that not only you are empowering your child but also you are empowered to manage your allergy journey.

I spoke to the psychologist about how to manage my fears and stress and also about how to manage Miss M’s allergies so that she felt empowered rather than getting into a situation where I was transferring my fears to her.

These days we are ever vigilant but pretty relaxed about Miss M’s allergies.  We focus on celebrating the milestones like the one today.  We are always doing our best to support and empower Miss M. through her walk with allergies.  I still have the gamut of feelings that comes with managing my allergy journey, I just don’t let the fears manage me. I think some fear is normal and a useful aid in keeping Miss M. safe.  And, I have found freedom in liberating myself from the fear and stresses that can be managed. 

Tips for managing the fears associated with allergies:

- Find a doctor you feel comfortable with or if you have only one option try and seek a second opinion.

- Find a group of people you can talk to regularly about your fears. 

- Feelings are not always truth so arm yourself with the facts: your doctor and Allergy NZ are great places to go.

- Managing allergies is tiring; find time to get rest and relaxation.

- Exercise and eat well.

- Make sure your plan for managing allergic reactions is clear and well documented so everyone knows.

- Ask for help in specific areas especially if it involves the mental and physical health of you or your child.

- Do everything you can to empower you and your child to manage allergies.

- Find positive stories and limit the negative.

- Attend an allergy group in your neighbourhood.

- Find ways to manage feelings and fears: journaling, exercise, talking to someone, sleep, choosing thoughts carefully.

- Use affirmations to increase positive thinking.

- Having a down day over allergies?  Set an amount of time for wallowing in it and then do something nice for yourself once your wallowing time is up.

- Did you know children do not have the concept of ‘what is fair’ until they are 6-7.  This helps parents with young children when they worry about the psychological impact of a child missing out on certain food or experiences.

- In our house we tell Miss M. ‘that is not your food right now but one day it will be’.  This has helped Miss M. to have hope and to see all food as good.

- We choose not to take Miss M. to some occasions with food – being so little she would never know and we do not need the stress of trying to manage her contact allergies.

- We only tell Miss M. what she needs to know about her allergies when she needs to know it.  We always check – Are we doing this to empower her or is this more about our fears?

- If you are a person of faith this can be such a positive asset in creating optimism.

- Celebrate successes and the positives of the allergy journey - look for the silver linings. 

- Find other families and children with allergies so your child does not feel alone even if it’s a ‘skype pal’ or ‘pen-pal’. Allergy New Zealand has a facebook support group here.

- During a reaction/ blood test/ food challenge - try to keep your voice light and where possible try and limit your fear.

- Children may not benefit from hearing conversations about your fears; find adults to talk with.

- Don’t be hard on yourself – forgive yourself at times and congratulate yourself.

Sarah also has a blog, click the image above to be redirected there.

I bequeath love also has a Facebook page here.

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