My last post in this new series about living well with chronic illness was about Brittany and her love of coffee. This week I would like to introduce Linda, another chronic illness blogger, who lives in a most beautiful part of the world and gets to work with my favourite sweet treat – chocolate!
Life with ME/CFS and Fibromyalgia
Linda has Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia which appeared “out of nowhere” in 2007 following a very stressful time in her life. Prior to that she was just like any other mum raising a young family.
In the early stages of her diagnosis, like many of us, she saw a number of doctors and specialists who declared her to be a “picture of health”. However, she knew something was wrong and, undeterred, continued in her quest for answers. It wasn’t until she sought out a ME/CFS specialist that she finally received her diagnoses.
In those early years, Linda did it pretty tough.
At the time her symptoms first appeared, her family was in the middle of a move some 3000kms away to a place where they had no family support, she was homeschooling her 3 kids (aged between 9 and 14 years at the time) and she was dealing with a debilitating illness that left her exhausted and sleeping 15-20 hours per day. At one point, she ended up in bed for a month in extreme pain after attempting to add exercise back into her life thinking it would help! I hear her on the exercise front, I had my only little discoveries there too.
She is now in a much more stable place but still experiences wide spread pain, extreme fatigue, un-refreshing sleep, post exertional malaise and continual flu like symptoms. Despite all this, she has a strong belief in being the best version of herself that she can be. She regularly paces herself and has had to change a lot of things from the way she used to do them. She’s had to learn to let a lot go. Difficult at first, but necessary.Living well with chronic illness is about learning to let go. Click To Tweet
In terms of managing her life, she has a very supportive husband but says living frugally has helped them all adjust. Linda also has her own chocolate business, making high quality additive-free chocolate. It gives her some space to rest and pace herself (whilst the chocolate is setting) but it still takes its toll on her health. She’s hoping to reduce the demands on her body further by moving into a virtual office admin/writing role sometime soon.
Comfort in beauty.
Linda gains a lot of comfort from her surroundings and takes amazing photos of the scenery around her (some of them I have included in this post). Linda lives near the sea in a colder part of the world to me where she gets to see the odd iceberg float by! Just like this one:
I, on the other hand, live by the beach in a typically hotter country which she tells me is on her bucket list to visit. If truth be told, I think we were both a little in awe about where the other lives!
In terms of managing her symptoms, pacing is hugely important as is nutrition. Linda eats a whole food diet and supplements her regime with homeopathy and naturopathy too. She likes to juice vegetables and she’s identified the vitamins and supplements that work for her which she sticks to.Pacing is hugely important as is nutrition. Click To Tweet
She says she is still a work in progress trying to learn effective methods of dealing with stress. I think I can safely say she is not alone in her quest to do that!
One of the biggest impacts Linda experienced has been on her social life. It has been difficult for others to get what she’s experiencing – with the explanation of ME/CFS often losing something in the translation. So whilst she occasionally socialises, she finds it easier not to engage too much with anyone outside of her immediate family because it’s just too hard for others to grasp what it means and understand what it feels like. She finds some people can be quite dismissive of ME/CFS.
Be the best version of you.
Despite the difficulties with getting to grips with a sudden illness that has endured for 10 years, Linda says there have been some good things to come out of it. She has become much more easy going and doesn’t sweat the small stuff as much. Her daughter has also discovered a passion and gift for helping others with pain management and is now pursuing a career in massage therapy for those who are in chronic pain.
For others who perhaps find themselves in a similar spot, Linda says it is very difficult. Adjusting to living with a health condition is like having to come up with a new version of you. Acceptance of this can be especially challenging but is absolutely necessary. Once you do get to a place of acceptance, it does allow you to move forward.
Her other words of advice include:
“Know that you are not responsible for your illness. Tune out the naysayers. Know that you are not lazy and you don’t just need to get more exercise, eat better or do the latest XYZ fad in order to improve. Also, take it one step at a time. Some days, that will mean one minute at a time. Other days, it will feel like you are going backwards but tomorrow is a new day with several minutes to try again. Find people who have the same illness who can help with what you are going through. Above all, do what you can to be the best version of you”.Be the best version of you. Click To Tweet
For more information on Linda, please check out her blog Balance Despite the Chaos. It’s aimed at creating balance in life, despite the chaos that goes on because of chronic health issues. She shares photographs of the beauty around her (whales, icebergs and gorgeous sunrises), along with her journey through chronic illness, the things that work for her, her struggles and her successes too.
Thank you Linda for being so open about your illness and sharing how you’ve got yourself to a better place. And thank you for also totally wowing me with your beautiful surroundings – I now know where to come when I need an iceberg fix!
Note: All photographs in this post belong to Linda and are used with permission.