Coping with ME/Chronic Fatigue Syndrome is complex. Here I am sharing Ali’s story. She has been battling with ME/CFS for the past 18 years now. Ali is not only my best friend but also my daughter Jessie’s godmother.
It means so much to me that she wanted to share her story to help others who suffer with this disease. I have lived through her struggle with her and witnessed first-hand how difficult life can be when dealing with this.
Ali’s Story – Living and coping with ME/CFS (Chronic Fatigue Syndrome).
The first time I was ever asked about ME/Chronic Fatigue Syndrome, I can remember the incredible sense of terror at the thought of it. The fear of having to speak about an illness that has so many stigmas and preconceived notions attached to it was very real. After 18 years of living with and learning to manage my illness the fear has not left me. However, I am also aware that without speaking about it and educating others, the stigma and fear will never fully disappear.
Suddenly my health changed
At age 20, my world fell apart in a way I had never expected. As someone who was incredibly energetic, high achiever, constantly busy and loved my hours of ballet practice I suddenly found myself unable to concentrate for more than 30 seconds. Just getting out of bed felt like the biggest mission of the day.
The diagnosis of ME/CFS
After months of meeting with doctors, I was diagnosed with ME/Chronic Fatigue Syndrome. Alongside that I was also told that I was experiencing a depressive episode. Everything that I had planned in my life had to change. My Dean at University was not very supportive and told me that I probably would never finish my degree. Within a few months I decided to leave the University I was studying at in Cape Town. I moved back home to Durban to be with my family and figure out the next steps in my life. Fortunately for me, I had supportive friends and family, in particular those who had been with me when I was diagnosed. But there were a huge number of people who did not understand the disease. Over the years I have lost many friends who don’t understand, many disappearing when I experienced a flare up.
Lack of research into ME/Chronic Fatigue Syndrome
The feeling of loneliness, fear and not much available information is the worst part of the illness. Thankfully times have moved on in the 18 years since I was diagnosed and there is more information available. However, the resources for research and development on ME/Chronic Fatigue Syndrome still remain incredibly low. The research papers that have been produced often differ in their outcomes. More funds and an integrated approach are needed before real headway can be made.
In absence of this research I can only offer thoughts from my own journey and these are ever evolving as I go through different experiences. While there is a list of possible symptoms everyone seems to experience different aspects and the symptoms, I refer to are the ones I experience.
The symptoms of ME/Chronic Fatigue Syndrome
If someone asks me to sum up what I experience on a regular basis I would say exhaustion. This is not just tired but really shattered. I also experience an inability to control my body temperature, pain which varies in intensity and never fully goes away, headaches and mind fog. By nature I am someone who always wants to achieve at the highest level. The inability to have clarity of thought and sometimes memory issues is incredibly frustrating. Suffering with headaches and pain are something I have learnt to deal with over time. Pain is debilitating but there are ways which can help alleviate this and I am not referring to painkillers.
Here are my top 5 tips which have helped me.
Find Your Tribe
You need a crazy awesome support group. People who want to understand what you deal with every day and don’t judge and assume anything. For me, I have a close group of friends who know what I have been through. I never have to explain myself to if I need time out. Not only that but they are proactive about helping when they notice something is not quite right with me. They are without doubt the biggest blessing in my life and I am forever thankful.
Ditch the Toxins
Easier said than done and will require research. Working and living in London means travelling on the tube and can be grim in terms of pollution. To combat that I make sure that my home is as chemical free as possible. This includes all personal care products, make-up & skincare and household cleaning products. Personally I use the brand Arbonne, which I purchase online through Wendy. I use these because of their no-nasties and toxins policy. For cleaning I use Method and Ecover cleaning products.
Clean Up Your Diet
Of course this can be a tricky one as I believe that we are all made differently. Watching what I eat and ensuring it is the best quality and cleanest food makes a huge difference. Gluten does react with me and while I don’t exclude it totally, I try to keep it to smaller amounts. Fresh fruit and vegetables play an important role alongside good supplements. Everyday I start off my morning with a green smoothie. This really does help! Alongside this I use Arbonne Nutritional supplements because they are gluten free, dairy, whey and soy free too.
Write it Out
Use a journal or draw, colour or paint – whatever works for you. Getting the emotions out helps balance me in some way. I am huge fan of the Start Journal where you write out 5 gratitude’s and 10 dreams every morning. Even in the worst brain fog it helps bring clarity to my thoughts.
Connect to the Earth
I grew up in Africa and nature is a huge part of my world. Whether I am walking in a park, riding a horse in Nebraska or sitting in the African bush, being a part of the earth makes me feel connected to reality and inspires positivity. We come from the earth and our connection to it keeps us grounded and in tune with ourselves and others.
Try some of my tips or find your own to help you through each day. Even if you are not suffering with ME/Chronic Fatigue Syndrome you will find these tips help balance your health and combat stress.
Living with ME/Chronic Fatigue Syndrome
Living with ME/Chronic Fatigue Syndrome can be hard but through this illness I have also found myself and continue to learn and grow every day. My biggest piece of advice is: don’t beat yourself up for having a glass of wine or a day on the couch. There is no perfect way to live. And mostly remember to find joy in the small moments – even if it is just hearing a voice on the phone that makes you smile.
Arbonne Products have really helped me
Wendy,my best friend, introduced me to the Arbonne brand about 8 years ago. The main thing that impressed me was their no nasties and toxins policy, plus the fact that they were Gluten free, dairy, Soy & Whey free. Once I started using them I found the benefits straight away and I’ve been hooked ever since. They have helped me so much that I wanted to share with others . I use so many of their nutrition supplements, skincare and make-up range.
Here are my top 5 products which have helped me with my ME
- Arbonne Immunity Support – especially during the winter months. This helps me with keeping illness at bay.
- Arbonne Detox Gelee – this cooling gelee helps me with my tired and sore muscles
- Arbonne Digestive Plus – this supports my gut health, which keeps my mental & physical wellbeing in check
- Arbonne CC Cream (with Pollution Defence) – I wear it every day and helps protect my skin while not adding toxins to my body – I also use all the other make-up on offer.
- Arbonne Greens Balance – I have this in my morning Arbonne Protein green smoothie (1 scoop = a portion of the 10 recommended fruits & veggies a day).
There has been received no payment for this endorsement. The reason I am sharing this is because I know these products have helped me. My hindsight can be your foresight. With very best wishes on your health journey, Ali xx
If you are reading this article and are suffering with ME/Chronic Fatigue Syndromw you will find more help and resources from Action for ME -more details on this website.
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