Chronic Fatigue Syndrome: Live With Hope!

Caring For You

BoardwalkBy Joy Turner 

When our youngest daughter Jo fell asleep in class at high school, we had no idea it was the beginning of a difficult journey of more than 10 years. 

Jo was diagnosed with a glandular fever-like illness, but as her list of symptoms increased, she fell further and further behind at school. Despite her best efforts, Jo had to leave school after Sixth Form.

Jo, who had previously played sport, loved hanging out with her friends, and was achieving well at school, was now spending her days unwell and sleeping ... and we didn't know why. Five years passed before Jo stumbled across a book about Myalgic Encephalopathy/Chronic Fatigue Syndrome. A formal diagnosis followed.

Relief at finally obtaining the diagnosis, and information about what Jo was going through, turned to dismay at the realisation there is no quick fix for this condition.

Jo took a holistic approach to her recovery that included symptom management, nutrition, an allergy diet, alternative therapies, rest, and maintaining a positive outlook.

Her health improved and she was able to study by distance, spend time with her friends, and take part in voluntary work, moving towards her goal to eventually study to become an occupational therapist.

My boss was great and really understanding but, because we didn't know how long Jo would need my support, I asked my employer to replace me. Although this was the right decision for our family, it did cause financial pressure.

ME/CFS is now classified as a ‘chronic illness' rather than a disability, affecting the services and funding Jo might otherwise receive. The frustration of this was highlighted when I went into hospital for a hip replacement and could not access any help for Jo or myself while I recovered. My husband, Neville, and our eldest daughter Rachel had to take eight weeks off work between them to share our care.

I believe that everyone who is caring for a person 24/7 should be able to qualify for a benefit, home support, and respite care, as people are not machines, and need this help to continue.

If the carers burn out, who's going to provide the necessary support? Trying to earn an income while caring can add to the stress.

Nothing prepares you for the role of full-time carer. I thought when I left my job that this would be a temporary situation, but the years have gone by. I am often exhausted and overwhelmed. There never seem to be enough hours in the day to get everything done. Finding time for myself is difficult too; sometimes the only spare time for myself is at night after everyone else has gone to sleep.

Making time for my husband, our other three children, grandson and friends is important, but challenging. I miss the freedom of going out for visits; instead, others must come to us. Family plans are often put on hold as trips, holidays, and weekends away are out of the question at the moment.

Tina Richards, the Bay of Plenty ME/CFS field officer, has been a lifeline, visiting and providing encouragement when we have been at our lowest. She is knowledgeable and positive; it is really good to talk to someone who understands what is happening in our family.

Tina has offered suggestions and pointed us in the right direction to seek help and answers. ME/CFS has been described as one of the worst non-terminal illnesses, as it robs you of so much in your life. As a parent, it is heartbreaking to watch your child attempt to fulfil their dreams, only to be held back by the effects of their illness.

Although Jo's days are still spent in bed, exhausted and weak, we have seen small but significant improvements. While she still finds conversation tiring, Jo is able to talk more, and has begun to relearn how to walk with the support of a physiotherapist. If it wasn't for my faith in god, I would find it hard to get through. Phone calls, emails, texts, or visitors appear at just the right times, helping me to reach out to others.

I cope by believing this is just a season, and that Jo is going to recover. it is important to live with hope and to feel that the best of life is still to come ... that Jo's future is going to be really good, and that her story will have a happy ending. Lack of awareness and understanding of ME/CFS makes life for sufferers so much more difficult.

People have either never heard of it or have inaccurate or preconceived ideas about the illness ... or even disbelief that it exists! Being so completely misunderstood can make sufferers feel very alone.

What is ME/CFS?

ME/CFS is a chronic illness thought to have three contributing factors: genetic susceptibility, an infection of some kind (such as glandular fever), and environmental effects. The illness causes extreme physical and mental fatigue, impacting the immune system, and the nervous and endocrine systems. The severe fatigue of sufferers does not improve after rest. Even normal physical activity can make those with ME/CFS feel very unwell. ME/CFS can affect every part of the body, and those who have it can look well whilst experiencing serious symptoms of this invisible illness. It is common to have trouble walking, standing, or reading.

Learn about ME/CFS and support across New Zealand at www.anzmes.org.nz

Did You Know?

Florence Nightingale of Crimean War and nursing fame was largely bedridden for the last 15 years of her life.

ME/CFS was not known then, but her symptoms suggest she had the illness. For this reason, ME/CFS international Awareness Day is celebrated on her birthday (12 May) each year.

Interestingly, in light of Florence Nightingale's nursing history, there have been outbreaks of ME/CFS among hospital staff, one of the more well known being London's Royal Free Hospital, where a large number of medical staff developed the illness.

Joy's advice for family, friends, and supporters of someone who has ME/CFS

  • Help them keep hope alive.

  • Find practical ways to assist.

  • Keep in touch with short but frequent phone calls or texts.

  • Visit, even if it makes you feel uncomfortable to see them unwell.

  • Send amusing, uplifting cards or e-cards. Treat the person the same as you did before they got sick.

  • Make known times when you are available to help, and things you're willing and able to do (baking, grocery shopping, hanging out the washing, vacuuming, meal preparation, ironing, child care etc).

  • When you visit, make your own drink ... and one for them!

  • Drop off a meal for the freezer.

  • ME/CFS can be a lonely, soul-destroying nightmare, seemingly with no end. Don't let your friend or relative go through this alone; your love and support can make all the difference!

How to cope - Jo's tips!

  • Keep hope alive.

  • Keep your sense of humour.

  • Watch funny movies and DVDs.

  • Make an inspiration wall with positive imagery.

  • Keep a diary of all the positive things you have accomplished, and special memories to reflect on.

  • Listen to relaxing music.

  • Pamper yourself! You deserve it.

  • Avoid stress and stressful situations.

  • Just scream sometimes!

  • Pray.

  • Text someone, if only to say hello.

  • Pace yourself.

  • Have contact with a field officer; join a support network.

  • Go with the flow; tomorrow is another day!

  • Keep your dreams alive.

  • Do some gentle exercise if you can.

  • Conserve energy for special occasions so you don't miss out on life.

© Family Care NZ

Photo: Shutterstock.com, IsraelGil