Fatigue and Pacing. I’ve recently come to realise that I’m one of those annoying people that freely gives advice .. but I don’t always apply it to myself 😛
I’m in the final stages of editing my self help book about living with fatigue; and writing it has highlighted that while I’ve learnt lots of tips that help me to live with fatigue … I don’t always take my own advice. I never thought I’d write a self-help book of any kind. The idea for this book coalesced slowly. It came to me after I found nuggets of useful information and helpful tips scattered all over the internet. I found a strange comfort in knowing that I wasn’t alone in my struggle, but most of all, I just wanted to pull all the suggestions and good ideas together in one place.
A few days ago I was editing a section about understanding your own limits and pacing yourself to avoid overdoing things and crashing. After a couple of hours at the computer I needed a break, a lie down and a cup of tea should have been my goal. But it was a beautiful day and the glory tree in my courtyard was laying over my washing line and really needed a light pruning …
I did start making a cup of tea – at least I put the kettle on.
It wasn’t a big job in gardening terms. I only needed to trim a few branches to free up the washing line … but then I had a courtyard covered in branches, twigs and purple flowers.
I do love the flowers, which is why we keep the tree even though the deep purple petals and washing don’t always mix well!
Sweeping the courtyard became an exercise in trying to stay upright .. I should have remembered fatigue and pacing, but instead I had to stop and really lie down.
In my book I strongly recommend that people with fatigue learn what their bodies can handle and pace themselves. I do know this works! I also know that sometimes we push past the limits of what’s sensible for us to do. Sometimes we can get away with it, but at other times we crash in an undignified heap and give ourselves a couple of days of extreme exhaustion as our bodies try and recover.
Since my own diagnosis seven years ago, I’ve met a lot of people who must cope with chronic fatigue. I’ve met people who manage to work full-time jobs, but have little or no energy left for anything else. And I’ve met people who can barely stand in the kitchen long enough to make themselves a sandwich. Fatigue is an invisible symptom, and it’s often associated with an invisible illness. I’ve met too many people, in everyday life and online, who are struggling, and who feel totally miserable and downhearted because they can’t imagine ever feeling any better. I’ve learnt that people may look okay, but if they are trying to fight fatigue daily, while they may look okay, they are suffering inside.
Medical practitioners, good friends, kind strangers, all help in different ways. But, especially at the beginning, it’s hard to find someone you can just talk with about how to cope. About what practical steps you can take to carry on living, to enjoy living, to not be consumed by an illness or undiagnosed fatigue and exhaustion. It’s easy to be overwhelmed by medical processes and options. Throughout the last seven years, I’ve researched exhaustively and I’ve tried a lot of recommendations. It hasn’t been quick or easy, but I have put several lifestyle tweaks into practice that have helped me. I hope by sharing them, I can help others with fatigue.
If I learnt to take my own advice, I could help me too!
Back in the courtyard Miles sniffed at the pile of leaves and gave me a cheeky grin.
Thankfully he didn’t jump into the middle of the pile and scatter them all over the courtyard again. He’s a beautiful boy … most of the time.
You may be thinking, “who is she? And what makes her think she has any business writing a book about fighting fatigue?”
For most of my life I’ve worked hard and for long hours, primarily in sales and marketing. In 2010, I was a senior marketing manager for a large telecommunications company. I spent a lot of time with my laptop, and on my blackberry, typing emails, typing reports et cetera. When I started experiencing pain in my hands, I assumed it was down to overuse, I didn’t think much about it until my right hand turned blue. Despite my hand feeling icy cold, it burnt with sharp shooting pains that did not ease with rest.
My GP was worried. He sent me for blood tests. Then he rang the closest hospital with a reputable neurology Department, to get me an appointment with an experienced neurologist as quickly as he could.
Many tests later, the specialists have given up on definitively finding what triggered the problem. Their best guess is that I had an atypical Transverse Myelitis that has left me with significant scarring in my brain, chronic pain in my arms, especially my hands, and chronic fatigue that is aggravated by the medication I need to take for the pain.
Everyone who suffers from fatigue will have their own experience. For me, fatigue commonly includes:
- Debilitating fatigue in my limbs after too much physical activity,
- Sharp pain in my arms, especially my fingers and wrists,
- An inability to focus and concentrate on anything,
- A lack of awareness of what’s going on around me.
I may need to print the first dot point in very large letters and hang it on the wall … where I will see it often lols.
What do you do to cope with fatigue? What life jacks have you learnt that helps you spread your energy across the day?
I love hearing from you! Let me know your tips in the comments below.
I’m looking for people who are happy to come forward and give me a snippet of information about how you cope with fatigue. I’ll be adding the most interesting comments to my book (with your real name or a pseudonym if you prefer) If you would like to help me out, and I really appreciate it if you do, please just email me: firstname.lastname@example.org
♥ Thank you!
My best wishes to everyone dealing with Fatigue xxxx