Top Tips for Chronic Illness Patients

These are my best ideas for dealing with chronic illness.  Got some I haven’t thought of?  Share your ideas in the comments, I’d love to know your thoughts…

Picture of a girl in a robe, asleep on the sofa and the words 'top tips for dealing with chronic illness'

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Learn: find out for yourself, anything you can on your condition so you can make good decisions about your care.

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Manage the symptoms:  follow the recommended treatments given by doctors, including taking all medications at the correct times. Use an alarm system or app to help you remember.
Plan for proper nutrition, engage in a recommended exercise program if you can.

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Observe:  Know what triggers your symptoms, if anything. Learn to pace. You know your limits better than anyone else.  Sometimes, challenge your limits a little. It’s okay to try things to better assess your capabilities as they change.

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Rearrange:  Identify the things in your home that can be re-organised to make daily tasks easier. eg. We have just installed a high bench in the laundry so I don’t have to bend down to do the washing. Changing things can help you maintain more independence.

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Enquire:  Ask away! Ask your doctor, social worker and anyone else involved with your care about the services available to you.  Ask online support groups for advice. These people have often been navigating these waters longer than you.  They will have invaluable ideas to help.

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Talk:  You need to continue to talk to the people in your life who are involved in your care. Don’t give up on expressing your needs.  If they don’t know, how can they help?  Just make sure you also keep up the listening part of the communication equation.  The talking and listening is so important, especially in your primary relationship. Try not to shy away from the hard conversations, persist with them until you find resolution, because in the resolution you’ll find peace and connection again.

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Redefine: what your roles and responsibilities are.  Discuss these with your partner, family, friends.  You might need to sometimes be assertive to help people understand the things you can and can’t do.

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Prioritise:  Decide what really matters to you in any given moment and congratulate yourself for prioritising that.  See if you are spending too much energy on tasks or people who are detrimental to your wellbeing.  It might be time to take some things out of the picture.

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Plan:  set realistic goals for your day and try to adopt a kind of structure. Eating at regular intervals can be hard to manage, but it is really important if you are taking medications.  Plan your food in advance whenever you can so that it will be easy to get to and eat. You might need to ask for help to get your food organised for the day. Avoid spontaneous activities if you don’t have the supports or circumstances in place to make it work for you.

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Reinforce:  how valid and useful you are by finding ways to empower yourself.  Being creative is a wonderful way to remember how unique and special you are. It’s also a great distraction.  Find ways to express your own skills and talents and explore all the ways you are able. This detracts from the focus of all the ways you feel dis-abled.  Think of things you can do and get into doing them.  For me, it’s writing… blogging has been a wonderfully empowering tool.  And I can do it in bed!

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Reframe:   Taking a different perspective from the negative is a powerful tool of choice. Being positive can be as simple as seeing the humorous side of a situation or reaching out to someone else who is suffering with some encouragement or acknowledgement. It can make an enormous difference to your emotional well-being.

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Distract:  If you like to be in control, this one is for you.  Man-handle your mind’s focus on your illness by wrestling it into another thought pattern.  Use some strategies recommended by psychologists. Listen to music, do some art, write; get your brain and fingers busy.

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Relax:  Stress worsens the experience of symptoms and leads to increased tension.  Deep breathing techniques, massage, meditation, yoga, tai chi are some things you could try (depending on your physical ability) to improve your relaxation.

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Laugh:  it’s the best medicine. If nothing in your daily experience is tickling your funny bone, seek out laughter.  Search online for funny videos, comedy channels or TV series.

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Get support:  It’s totally normally to be emotional about being chronically ill.  Of course you are!  There is grief for yourself, but also you may find self-blame, anger, frustration, hopelessness, despair.   Seek help among those dealing with your illness.  If you can, find a support group, online or in person. But also, use the mental health help-lines or seek professional psychological help. Friends, family, fellow-sufferers and health professionals can all help you find ways to let go of the sadnesses and find a pathway through.

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Let it Go:  take steps to accept that the old definition of yourself and your old life, prior to becoming ill is no longer relevant to this time you are walking through. Let yourself redefine and create a new meaning and purpose beyond your illness.  I have found that asking by myself  “What sort of person am I?”  rather than “What do I do?” I have a good starting point for this process.  Letting go is not something you’ll do once.  You’ll let go in stages, or you’ll let go over and over.  Just keep your focus on who you are. And be kind to yourself. This letting go is tricky.
*Are you in New Zealand?  If you are and you are registered with a ProCare GP, you may be eligible for funded sessions with a psychologist (no cost to you).  You can find out more about this service by contacting ProCare Pscyhological Services or your GP.   www.psychologynz.co.nz
Some health insurance policies cover psychiatric services or there is always the option to pay for the services of a qualified psychologist.  Call your insurance provider if you have questions about it.

Chronic Illness.  Top tips for dealing with chronic illness.

Student

She is standing in the witness stand. The trial has been dragging on, but she is here for a very important reason. It’s time to tell the perpetrator exactly what impact their crime has had on her life. She’s been waiting for an opportunity to make her voice heard.  Yet she doesn’t even know if her words will make landfall. Still, she has to say them. She takes a deep breath and begins to read a letter.

What would you write_(1)

Imagine if you got the chance to tell your Diagnosis exactly what it has done to your life. If you were writing that letter, what would you say? What would your ‘victim impact statement’ describe?  Here’s mine:

headerDear Dysautonomia,

Some of my friends have pet names for you.  But I have never wanted to do that.  Calling you something cute might give you the idea that I’d like us to be friends, when I don’t think that is possible.  I often wish I had never met you.

I’ve had weaknesses in my autonomic nervous system, since I was a kid. And that was okay; just something about me I learned to make adjustments for. Those little quirks of my system, the fainting, the tummy aching, the tiredness.  Those things were just something to accept, like my lack of natural talent on the sports field.  Who needs basketball when they have books?

Then you arrived with full force.  You came in through a window left open by a nasty virus.  You made my already wobbly autonomic nervous system your target.  You hijacked my immune system and made it your henchman. It’s been doing your dirty work ever since.  You hid there, where they didn’t think to look for you. Sneaking around my nerve junctions, sliding out of view as one doctor after another searched for the reason behind my ills.

First, you had a go at my heart.  They put in a pacemaker to limit your influence.  Then my digestion, and my ability to go to the toilet. You made my extremities burn and numb in relentless torment. You troubled my focusing ability and pulled and pushed my blood pressure into a see saw of ups and downs. You made it hard for me to regulate my temperature and threw in some dizziness every time I moved into an upright position, you drowned my days in bone sapping fatigue.  You shifted my career well out of my reach. I felt so purposeless. The doctors gave me pills and potions, enemas and catheters.  For every trick you pulled, we tried counter-manoeuvres. Few of them were effective.

There were times when it even seemed like you had taken the shine away from the best treasures of my life.  My marriage and the motherhood I had longed for.  These gifts were tarnished because I couldn’t be the wife and mother I yearned to be. I was angry with you for that.  Angry on behalf of the beautiful people I call my own, too. I was so angry about the freedom I had lost to you; they had lost to you.

I hoped.  For six years, living with you, attached to my every move, dulling my capacity to think.  I hoped.  Someone will discover something, I thought.  Medical advancements are happening all the time.  Maybe they will identify something important in those minuscule, sparsely funded research studies.  And they are. Little by little the scientific community is inching their way towards something.  I chanced upon a keynote presentation by a neurologist in the States. A man who has studied autonomic ganglia for years. It flicked a switch in my brain and I began to see.  There might be a way to finally let you know, Dysautonomia. You’re not welcome here.

And now, I’m on a very promising treatment pathway; I’m getting the movers in. I just wanted to write you this letter as we attempt to excise you from my life.  My own victim impact statement. All those things above, they are painful facts about why I don’t like what you have done to me.  But there are other facts too.  Surprising gifts you’ve given, even as you have been carving your swathe through my autonomic nerve fibers.

You taught me that I could find things out.  Figure things out, too, things way beyond my artsy brain.  You led me to patient groups where I have found some of my staunchest friends.  And you forced me to re-arrange my interior self. To consider who I am and what I want to be remembered for.  To identify the things that really matter.  To let the people I love know how I feel.  And you gave me back a gift I had dropped a long time ago.  You made me write again.

I don’t know why it is that it takes hardship to gain insight.  But it does. Being sick with a chronic illness, dealing with you, Dysautonomia, seems like too harsh a price to pay, but I would pay it all over again.  To learn what I have learned, to become who I am becoming.  I would like to tell you that although I don’t like you, didn’t want you in my life and would dearly love to see you go, I am grateful to you.  You are my shortcut to wiser living.  A portal into a new and better me.

Thanks for that.
 I also want you to know, that even if I never manage to eradicate you from my life, I will always be your EX victim.  Because I can choose whether or not I continue to be victimised by your presence. And I choose a different perspective. To accept that every torment, is a teacher.

I remain,
Your student,

Rach