My Journey With… Living with a Chronic Illness

This newest series on my site has gained such a brilliant response that I’m keeping the stories coming (as long as people are willing to share, of course!)

The idea is that each post features a new brave warrior women sharing her journey…. My hope is that these real stories will make a real impact in your lives and start new conversations, sharing, healing, gratitude and personal growth.

I’m so grateful to the brave woman who have already come forward, willing to share their journey. Some have chosen to remain anonymous, some are sharing openly.

 

Today’s My Journey With… story is shared by a thirty-six year old woman who has been chronically ill for nearly all of her thirties.

I’ll let her take over and tell her story…

 

Growing up, I was heavily involved in music and choirs throughout my schooling, as well as a healthy dose of regular sport, including cycling to school from a young age. I loved school and excelled academically and was a very sociable young woman. I had a happy, adventurous, fun and privileged childhood, and I was educated to a professional level.

I grew up in a family who loves the outdoors, something I enjoyed into my adult life – especially walking, running and hiking, and cycling, participating three times in a 109km cycle race around Cape Town in my twenties. Traveling is one of my favourite things, and I lived/worked overseas twice in my twenties. I’ve always eaten very healthily and tried to live a balanced life.

2011 was a busy year full of change and challenges. It is only with hindsight that I can see just how stressful it was.

It was in November 2011 that I woke up one morning feeling like I was getting flu. And so I diligently rested, trying to “sleep it off”. But the foggy brain, swollen glands and fatigue didn’t leave. I didn’t know it at the time, but this was the start of my battle with ME/CFS (Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome).

ME/CFS is difficult to diagnose and treatments tend to be varied and mostly happen on a “trial and error” basis. It was only in the middle of 2012, after more than 6 months of visiting various doctors that I eventually got the diagnosis of CFS. The best advice for the early onset of ME/CFS is to rest as much as possible. Unfortunately I wasn’t given this advice and so pressed on with life. I continued working, travelled to Johannesburg to sing at my sister’s Church’s Carol Service, and socialised with friends.

Christmas 2011 was spent largely in my room. I didn’t want to go to the beach with my family (which is very unlike me) – I mostly slept and rested. Unlike with a common cold or flu, resting doesn’t make you feel much better or ensure recovery when you struggle with ME.

Ever since then, despite eating healthily, seeking medical advice, trying to keep exercising, limiting stress and cutting back on commitments, my symptoms have only worsened as the years go on.

Affecting approximately 17 million people worldwide, ME/CFS is extremely debilitating. Some of the symptoms that I struggle with the most are physical and mental exhaustion, muscle and joint pain, a high heart rate, nausea, dizziness, IBS, fever, un-refreshing and disturbed sleep, extreme sensitivity to light, sound, smells and touch, brain fog, poor memory and concentration. 75% of those affected cannot work and 25% are bed bound. Only 5% recover.

ME/ CFS affects people of all ages, races, socio-economic status and both males and females, although it’s more prevalent in females. It also affects many children and teenagers. Even though there is continual research, it has no known cause, no cure and only mildly effective treatment options to alleviate certain symptoms. Very sadly, because the research is not at an advanced stage, the medical profession often provides conflicting advice and, many times, the therapies provided are more harmful than helpful. There are some myths that are still prevalent in the medical profession – three of which are: it is all in our heads, that we are depressed, or that just getting out and exercising will heal us. Unfortunately, the largest studies (eg. The PACE trial) have shown that talking therapies (i.e. CBT) and even graded exercise therapy (GET) have harmed more sufferers than helped them.

I often feel discouraged by not being able to pursue my passions like music, exercise, being outdoors, socialising and working. Even watching movies and reading can be draining. It is an isolating illness. Daily decisions are tough, even the choice between showering or sending an email. My husband and I have to plan our whole lives to the minute detail – spontaneity results in a backlash from my body that affects me for days to come. Simply going to church and being in that small crowd, where I sit comfortably, can leave me badly affected for a few days.

One thing I am not looking forward to is using a wheelchair at the airports for my next flight – however I have decided this is necessary – what’s the point of spending the time and money on a holiday if I must spend most of it alone and in bed? Lastly, one of the hardest things about this illness is the stigma of laziness and demotivation or depression which is still associated with it (though awareness is slowly improving). This is contrary to my own dreams and aspirations I have for my own life.

What, or who, helped you to push through this experience? A book, a person, an incident, therapy, medication or simply, time?

Coping with a chronic illness is never easy, especially when it feels like it has stripped away the very things that make you you but there are some things I have found to be very helpful….

To start with, there is a wonderful book entitled “The Amazing Technicolour Pyjama Therapy” by Emily Ackerman – I would recommend this for anyone who suffers, lives with, or knows someone who has a debilitating chronic illness.

Another thing that is critical to “surviving” with this illness is listening to one’s body. This is something I have had to learn – when to say “no” and when to rest. Unfortunately I didn’t do enough of this at the start because I didn’t know that I had ME/CFS at the time. Knowing this may have increased my chances of a full recovery.

Light exercise is important to me. I do Pilates and stretching most mornings, when I can handle it, even if it’s only for 10 minutes. I like to get outside most days for a short walk around the block, however I can’t manage it every day.

My faith is crucial to me. Without God, I don’t know how I could keep moving forward. Yes, I feel discouraged, I hurt, I worry about the future, I get disappointed daily, I question Him often, but He never stops being my God. And I know He is always there and will never leave me. I also know that He loves me, treasures me, and is a very good God!

Having a Facebook support group has been so helpful: for tips, articles, and just general support from those who truly understand what it’s like. I’ve made some great friends already. I try not to be online too much as it aggravates my symptoms, but it is so good to have the group there when I need it.

Staying in touch with my friends is important too. Even if I can’t see them regularly we chat by text and email and we make plans to see each other where we always do something very low impact. Understanding friends are often happy to come visit me at our place. When I go out to see them, they understand that it’s for very short periods of time.

People’s efforts to understand me and my illness really means a lot to me, knowing that it can come at a cost for them to do so, and also because I don’t look sick! People will never fully understand, but they will do their best and I have a few people who really do “get it” and try to be on my level – my wonderful new husband is a great example.

 

Through this experience I have learnt to be more compassionate to everyone I meet. Whether it be the way I listen to them, talk to them, encourage them, and help them, I am more willing to engage in peoples’ struggles and show empathy. I know that I am more open-minded than I used to be about how what people are going through shapes them, that you can’t know what people are going through unless you actually take the time to talk to and listen to them, AND that some disabilities are invisible. I am less judgmental, and have realised, for example, that we all need to be more patient with a person walking at a snail’s place while we’re in a hurry, or not get frustrated when someone just stops in the middle of nowhere to rest… because you never know what is going on with them.

Compassion extends not just to the words we use or the way we try to listen, but to actually offering help to those people (I try to do this even though I have such little physical capacity). Encouraging people is so important, even if you can’t be there in the flesh.

I’ve also realised that this compassion needs to be extended to myself more often. I have spent a lot of time in my life evaluating the concept of “identity”, especially since my faith speaks so strongly about it and because I come from a high achieving family. I believe I was always a bit too hard on myself. Having said that, I have always had high standards – and tried not to be selfish but rather put others’ needs first. So it’s a tough balance to strike. However, living in a place of grace and mercy for yourself and others is, in my opinion, the best way to live.

Obviously there is not always a reason for going through such hard times in life, but now that you are further down the journey can you share any insights or personal growth that the experience taught you? 

I have learned so much about managing the illness in the last 12 months, owing to a “crash” last August. As a result of this “crash” I’ve done a lot more research than previously.

Having moved overseas recently I have the extra challenges of meeting new people and knowing that they don’t know the real me – the active, sociable, adventurous and even capable me. I am slowly learning to ask for help but this is still a challenge, especially at my age!

Being stripped of my independence is something I still battle with – my husband does a lot of things around the home to care for us as well as being the main breadwinner – I can contribute very little.

I am still battling the work issue. The bright office lights, being in front of a computer and relating to people for a 6 hour day were all a problem. This meant that I recently had to give up my 24/hour per week job. I do need to do some work to bring in some funds – but this is difficult because I can only think clearly or prevent post-exertional malaise if I have bedrest between each small chunk of work. I am going to be freelancing for a while. I don’t know what the future holds!

I would like to be a mother, and this will have to be soon, but we will see how my health behaves. First and foremost, I am still trusting for a miracle – that I would be healed of this disease and that I will find better ways of managing it every day. I also hope and pray that those few people around the world who are researching for a cure would be successful soon and that they would be given much more funding for this!

Lastly, I continue to hope for general medical practitioners to be educated and empowered to treat ME/CFS patients better on the whole, and for the social stigma around this illness to come to an end. Please be aware of this illness and other illnesses that often aren’t as visible as some disabilities, as you may know someone with it but be unaware of their struggles – try to help them practically with day to day life: give them a lift to a social gathering, make some meals for them once in a while, send them encouraging messages regularly or ask them when would be a good time to have a phone call or a visit. And lastly, please pray with me for my miracle! Thank you.

Jenn Brea, an ME/ CFS sufferer who has recently directed a documentary about her illness. Watch the trailer below.

Some useful resources

Help and discussion forums:

The ME Association aims to support people with ME/CFS through all stages of their illness.

www.meassociation.org.uk

This website, founded by Cort Johnson, is dedicated to providing timely, accurate information to people with chronic fatigue syndrome (ME/CFS) and fibromyalgia.

www.healthrising.org

 

Research and Advocacy:

Invest in ME Research (IiMER) was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals.

www.investinme.org/lander17.shtml

David Tuller is a lecturer in public health and journalism at UC Berkeley, who advocates for ME/CFS patients and writes on Virology Blog.

  1. http://me-pedia.org/wiki/Virology_blog
  2. www.virology.ws/mecfs

 

South African Foundation:

Run by Retha Viviers, a sufferer.

mecfssa.org

www.facebook.com/MECFSFoundationSA

 

I also found this amazingly written story by an Irish woman, former lawyer and fellow ME/CFS sufferer, really helpful.

This movie trailer for Unrest is also really great. It’s an excellent movie coming out in theatres in Autumn and it was directed by a sufferer, Jennifer Brea, from her bed and has won awards at film festivals in US and UK, including Sundance Festival!

 

 

 

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Kathryn Rossiter

Kathryn is a South African lifestyle blogger and mom of 2 who has been blogging daily for almost 7 years! She writes about travel, health, beauty, fashion, decor and family... but not food (unless it's food she's eaten made by someone else) as she is a hopeless cook. She only wakes up early for 2 things... a red-eye flight to somewhere exotic and early morning game drives. She has just finished an extensive home renovation and would prefer to never see another box again. She's never met a chocolate or glass of bubbles that she didn't like!

2 Comments
  1. Every single thing said in this post resonates so deeply with me-even the fact that we both live in Cape Town! I’ve been diagnosed with Fibromyalgia for four years but I figure I’ve been suffering with it for twelve or so. I feel robbed of the person that I was and that I hoped and worked to become. I’ve resigned from my job after having been denied my disability application. I am married with two very active boys and freelance now when I am able.

    This very sensitively written post says everything I would say if someone asked me for my story but what the writer and I cannot express in words is the soul wrenching agony of the pain. The moments when you tell yourself you shouldn’t be doing this activity but your heart wants to be involved and share in family events and so you do and suffer during the event when you smile while your head spins with the noise and other stimuli. Then there’s the suffering for days after when you’re actually bed ridden and quite useless. We struggle to speak and remember promises to friends and family, kids school events and where we put our keys. We go to be tired and wake up exhausted if indeed we had the pleasure of sleep.

    People hear and read our words and bless them, they try to empathize but really only a fellow sufferer will know the daily, the constant effort of living in constant chronic pain and all that goes with it.

    When I dreamed of having kids of my own I pictured us hiking and cycling and doing all sorts of silly but active things. My reality now is that I’m lucky if I have the energy to supervise their homework and cook supper. I don’t want this to be their memories of their mother. I don’t want them to be influenced by my condition but they are and they will be forever affected by a mom who was sick. It kills me inside to know that my legacy to them might be this debilitating, inherited illness.

    Sufferers like us so often write about our experiences and our struggles I think in the hopes that just one more reader may take one step closer to understanding our plight but also sufferers in general so that we all will relate to our family, friends, colleagues and strangers in a gentle, more forgiving way.

    My hat is off to you dear writer and you are now in my prayers.

  2. Liesl, I only read your comment now, so I am sorry for my late reply.
    Thank you for your kind words and very apt comments. You certainly hit the nail on the head, and I always appreciate that! May your comment enlighten others too.
    Xx blessings and prayers to you too, May the God of all comfort be very close to you in all of your times of need.

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