LIVE with LUPUS and STILL have an AMAZING LIFE!

When the word ‘LUPUS’ slips out in conversation, I am met with a range of different reactions. A blank face, or the question, ‘What is Lupus?’.  But for a person who knows somebody with Lupus, they’ll ask a different question.

‘WHAT’S LIFE LIKE LIVING WITH LUPUS?

Never did I expect waking up one morning just 19 years of age feeling like I was 80 years old. My joints were so sore and painful, my feet swollen and throbbing with pain and feeling like I couldn’t move out of bed!  I was healthy growing up, rarely missing a day of school.

Then out of nowhere it just hit me – I couldn’t move – I had arthritis all over my body.

My boyfriend at the time told me ‘You aren’t exercising enough, that’s all’, so I did my best to stretch and squat and exercise despite the pain it brought. My mother told me it was because I didn’t drink enough ‘Aloe Vera,’ but it didn’t help me.

A GP at a medical centre looked at my swollen hands with little interest, took a blood test and said, ‘You are low on iron, just take iron tablets’.  Finally I ended up at a naturopath who diagnosed me with metal poisoning. She gave me a list of food I couldn’t eat which was basically everything!

It wasn’t until someone saw me barely walking trying to get to university. They brought me to a ‘good doctor’ (explain what you mean an integrative practitioner?) who tested me for a young person’s arthritis then they referred me to a rheumatologist.

I was diagnosed with LUPUS – or the technical word “Systemic Lupus Erythematosus (SLE)” or the “Wolf”.  A somewhat difficult chronic illness to diagnose because its symptoms resemble other sicknesses and are so varied from person to person.

The doctor explained it to me this way: Lupus is an OVERACTIVE immune system… Instead of protecting the body it attacks the good parts of the body. The major concern is when it attacks the major organs. I remember him saying to me, “It can attack any part of your body from your head to your toes, particularly if there is a flare up, so avoid stress…”

A flare up is when some sort of trigger like stress causes the Lupus to become active.

When Lupus is active it attacks the body.

Attack it did!

Shortly after diagnosing Lupus I had a month of fevers, rashes, hair loss and loss of vision. I woke up with black smudgy lines in my vision – what happened to my sight?

Discovering that I had a rare case where the lupus created abnormal blood vessels in both my retinas which were bleeding, the medical team said these had to be removed by laser.  I am blessed that the part of my sight they removed was in my proliferal vision and that I can still see.

After the initial flare up, finding a medication that worked was a challenging time. Until I could find a medication that worked with my body I continued with the symptoms. This time was perplexing as I wondered when the symptoms would settle down?  Fortunately after a few months I found a medication that brought the Lupus activity down into remission.

Now it was up to me to live a lifestyle that wasn’t stressful.

I am grateful I was diagnosed at the right time – years ago when little was known about this, people would die from Lupus. People were also ignorant about Lupus and not understanding. Nowadays with the proper care people continue to live amazing lives.

I have had Lupus for 16 years.

Thanks to some changes I made to my lifestyle and a considerate understanding husband and family, I have been able to live an amazing life with Lupus.  I have been able to study and teach Visual Arts which is what I am passionate about. I have travelled all over the world. I have even had a miracle child with Lupus.

Trying to live life with less stress involved me making some choices:

I chose to work part time as a teacher and as a mother instead of  full time so that I did not over exert myself and cause a Lupus flare up.

It involved me asking for special assistance at university to be  granted assessment dates spread out to reduce stress for medical

reasons.

When I had my baby I asked for help from a charity that had volunteers relieve mums for two hours a week to prevent a Lupus flare up again.

All of these steps helped me have the energy to enjoy life and to give to loved ones.

Focusing on my goals moved me forward.

Recently I met with a friend who asked to see me. She was going through the same perplexing process of what I went through when I was first diagnosed and she had so many questions. In the end, she said ’Thank you’. She thanked me because I gave her hope that she could still live an amazing life despite her illness. She could see that I still did the things I loved, travelled, met an amazing partner and had a miracle baby despite the challenges.  She knew this was possible for her.

If you are living with Lupus or have a chronic illness, it IS possible to live an amazing life.

These are my tips on how to create an amazing LIFE with a chronic illness:

 

  • Manage your LIFESTYLE:  – Know how much your body can handle and make adjustments. That may mean reducing work hours, working in a less stressful environment, asking for help, or taking more time to rest in the day. Taking these measures will assist in greater wellbeing and enjoyment in life. You will also have more energy to give to your family and friends.

 

  • Don’t compare yourself to other people:  I used to get myself worked up feeling guilty that I wasn’t working as much my friends were. Was I lazy? Was I making up this sickness? After trying to keep up with others by overworking and feeling the painful consequences, I learned how to listen more to my body. Focus on what you can handle rather than comparing yourself to other people. If they make comments, just remember that they don’t understand.

 

  • Be a victor instead of a victim: Feeling sorry for your self can block you from living such an extraordinary life. True there are some adjustments you need to make in your life, but you are still capable of so much. There are people without sight, limbs and devastating illnesses.  Your life is still a dream life for thousands of people in the world. Be a victor and start making a list of all that you is grateful for – the fact that you can breathe, you can walk, you have a home, the people in your life, your talents and gifts and so on. Then say thank you to the Universe, someone is looking after you.

 

  • Have GOALS: Make a list of all that you would like to Do, Be and Have. Create a vision board. Stick images up on the board of where you want to travel and what you would like to experience. Doing this will help you to focus on enjoying your LIFE and working towards goals rather than focusing on sickness.

 

  • GIVE BACK: Give back to the community from the heart. Even if it is to donate your old clothes to charity. Support a cause. Do something. It changes your energy from being self-absorbed to seeing that bigger picture. It also feels good. If you can’t give money give in another way, even if it is just to listen to a friend in need.

 

  • Get out in the fresh air: Get reacquainted with nature: Go for a walk at the beach with your shoes off, take a walk and feel the grass. Sit in the morning sun and breathe in fresh air. It clears your mind, refreshes your soul and puts you in a positive frame of mind.

 

  • Eat an apple and drink plenty of water: Apples are loaded with Potassium and Vitamin B which are depression fighters. If you can’t eat an apple eat a fresh fruit at least two serves a day. If possible eat more raw fruit and green vegetables and drink plenty of water. It leaves you feeling more energised instead of lethargic.

 

  • Do something enjoyable: Raise your energy by doing something you love. Read an inspiring book or watch a movie. Sit in a bath and relax or listen to music. Love yourself by treating yourself.

 YOU can have a TRULY AMAZING LIFE!

Want to know 5 simple steps to help you experience more joy in  your life? Register on this page to find out more.

Do you have any questions? Contact me at anna@valuelifecoaching.com

 

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