What are you struggling with most right now?
This is not a theme for a long blog. This is a question I’m asking YOU.
What aspects of having ME / CFS / Fibromyalgia do you most struggle with from a coping, psychological, emotional point of view?
I write a lot about MY experience of CFS / ME and electrosensitivity on this blog, and give you MY perspective on how I manage it.
But today’s blog is about YOU?
I want to know what YOU struggle with the most. What are the issues YOU want me to blog about?
That’s it.
Leave your answers in the comments section below or on this special thread on my Facebook page.
Then I will know what YOU want me to write about.
In a later blog, I’ll tell you the answers to this question from MY perspective, but today is about YOU.
Today I am struggling with keeping up with a daily blog, and lots of physical and mental stuff that goes along with that and managing illness, motherhood and other commitments.
Today and tomorrow I’m throwing it over to you so YOU can have a voice and tell me about YOU and your stuff.
So, for today, I ask you again:
What are you struggling with most at the moment in living this CFS / ME life?
Looking forward to hearing your answers!
Today’s Action Step
Actually take a few minutes to answer this question in the comments, this Facebook thread, or Twitter. (if you answer on Twitter I’ll probably copy it over to the blog so we can keep all the answers together)
I’ll compile the answers in a later blog, so EVERYONE gets to contribute.
Over to you my friends π
Farda shoma ra bebinam (see you tomorrow in Farsi)
Keep Smiling π
Louise
PS. Happy 33rd Birthday to my brother! π
Related Posts
Day 1: 31 Days To A Better CFS Life β 3 Myths of Acceptance That Hold Us Back
Day 2: 31 Days To A Better CFS Β Life – It Is As It Is. Choose It!Β
Day 3: 31 Days To A Better CFS Life – 5 Ways To Control Our Thoughts When In Overwhelm & Despair
Day 4: 31 Days To A Better CFS Life – 6 Things You Can ALWAYS Do Despite CFS / ME
Day 5: 31 Days To A Better CFS Life – 7 Ways To Focus Your Thoughts On Something UpliftingΒ
Day 6: 31 Day To A Better CFS Life – Being Present – 7 Simple Mindfulness Techniques To Help Manage CFS
Day 7: 31 Days To A Better CFS Life β Learning To Ask For Help β 5 Simple Tasks You Can βOutsourceβ To Help Manage CFS
Day 8: 31 Days To A Better CFS Life β Discover Podcasts β 5 Steps To Finding & Listening To Good Podcasts
Day 9: 31 Days To A Better CFS Life β Listen To Your Body. I Am Today!
Day 10: 31 Days To A Better CFS Life β 10 Ways To Nurture Yourself & Fill Your Bucket
Day 11: 31 Day To A Better CFS Life β 5 Ways To Combat Spoonie Mother Guilt on Motherβs Day!
Day 12: 31 Days To A Better CFS Life β My 5 Fave Ways To Connect With The Online CFS / ME Community
Day 13: 31 Days To A Better CFS Life β How & Why Audiobooks Are A Great Illness-Management Tool
Day 14: 31 Days To A Better CFS Life -10 Top Audiobooks I Recommend
Day 15: 31 Days To A Better CFS Life: 5 Tips For Getting Tasks Done When You Have CFS / ME
Day 17: 31 Days To A Better CFS Life: What Are You Doing WELL In Managing CFS / ME / Fibro? What Are You NOT Struggling With?
Day 18: 31 Days To A Better CFS Life β 3 Things I Struggle With At The Moment & How I Manage Them
Day 19: 31 Days To A Better CFS Life β 101 Ways I Manage CFS / ME & Electrosensitivity Pain
Day 20: 31 Days To A Better CFS Life β 5 Benefits Of Writing To Help Manage CFS / ME
Day 21: 31 Days To A Better CFS Life β Gratitude is Healing β 5 Ways To Practise Gratitude
Day 22: 31 Days To A Better CFS Life β A Letter To Partners Of People With CFS / ME
Day 23: 31 Days To A Better CFS Life β 7 Healthy, Safe Ways To Release Emotions
Day 24: 31 Days To A Better CFS Life β Letter To The General Public From Those With CFS / ME / FM β Part 1
Day 25: 31 Days To A Better CFS Life β Letter To The General Public Pt 2 β How You Can Support Someone Who Has CFS / ME / FM
Charlotte Clark says
Hi Louise
Now it’s Spring here in England, and we’re getting some lovely sunny days, I would like to be able to get out and enjoy some of them. But I’ve been pretty much housebound in my flat for the last six months so I really need a way of motivating myself. What can you suggest?
Louise Bibby says
So many ways to answer that question Charlotte. Let me give it a go.
I guess I’d ask, what motivates you usually? What do you love when you DO get outside? Is it the flowers? Is it the fresh air? Is it being near water? Is it doing some gardening? Whatever it is, try to harness that to get you motivated.
It’s hard to answer this question properly as I don’t know how debilitated you are. Assuming you have SOME mobility, I’d suggest just starting with sitting outside on a chair in the sun. Use mindfulness to really stay in the moment and take in the colours, the smells, the sounds, the feel of the sun and wind on your face … absorb yourself in your senses and enjoy the beauty of spring from that perspective. Day 6 was all about Mindfulness if you want a read.
If you’re able to be a bit more active, or someone can transport you, take yourself to a favourite spot in nature – a park, lake, lookout (viewing spot). If you can, sit on the grass and put your hands and bare feet on the ground. It’s a very grounding thing (stating the obvious), but I find those sort of things very therapeutic and calming.
I’d say, start small, then extend your outings if energy permits. Also, if you’re into photography (as I am), take your camera or smartphone and get creative with your photography. That could stimulate your creativity and provide some motivation that way.
Let me know how those answers sit, and if you have any further questions or responses to this, just post on here and I’ll do my best to suggest some other motivating tools.
Having been in Europe for one winter of my life, I realise how amazing these spring days must be for you after a long winter. I really hope you CAN get out and enjoy them π
Keep Smiling and thanks so much for taking the time to comment. My Day 17 post is also an interactive one that you might be interested in. It’s here!
Louise π
SiobhΓ‘n says
I struggle with the lack of consistency and a feeling of not being useful or giving back. Even when I pace really strictly I can’t seem to increase activity long term.
I’m absolutely guilty of pushing through to complete things (like one off volunteering stints) because at least I feel I’m doing something and giving back. It’s not something I can do regularly so charity days are the least I feel I can do.
I willingly suffer the consequences and I accept them as a given ‘evil’ because it’s worth knowing I did something useful and selfless. Saying that I’m still bedridden after last weekend’s stint it was a night/daybreak, Darkness into Light suicide awareness walk, crazy manic but so rewarding. But I’ve learned that if I do that event again to be more rested and prepared for what it entails.
It’s taken a long time but I feel more confident with being ill and accept my limitations but sometimes the human in me just has to feel I suppose ‘worthy’ is the right word? I miss my work which was retraining unemployed people hard work with high rewards I got my kicks from helping people.
This series is so useful thank you again for stretching yourself to persevere I hope you’re not suffering too much. A couple more like this where you ask for input, a great idea hope it affords you some rest, for today anyway xx Sibh
Louise Bibby says
Firstly Sibh, thanks so much for the positive feedback. It makes all the difference to my ability to persevere when I get such generous responses as yours today! π
Boy can I relate to what you have shared. I, too, have often felt like I have not been able to contribute to society in a way that makes me feel ‘worthy’, and hence, I have often pushed beyond my limits to do so. And, like you, I don’t regret it – though have often paid the consequences. At one stage I took on researching and writing a 200 page full-colour history book of my home-town Aussie Rules football and netball clubs. It took me 3 years – 1 year of solid writing, designing and editing the book. I was so worn out by the end, but it gave me such a sense of satisfaction when it was published and launched. I finally felt I’d contributed something really worthwhile to my community (after feeling like I’d never ‘done’ anything with my 20s & 30s! – though I HAD. I just felt I hadn’t done anything worthy in societal terms).
What an inspiration you are getting out there and doing a walk for suicide awareness. Some may say you’re crazy for doing something that led to you spending a week (and possibly more) in bed, but, as you say, for you it’s worth knowing you did something useful and selfless. AND I love that you have chosen to take the learning from the experience – not in order to give up or not do it again – but in order to see how you can better manage and prepare beforehand next time. That’s inspiring to me!
I think the human in all of us wants to feel ‘worthy’. I guess it’s all in how we interpret that word. It seems you’ve found at least one way to do that, and I’m so thankful you shared it with us.
My post today might also interest you if you like being asked for input. This one’s about what you’re NOT struggling with that you used to? What, in your CFS / ME management have you mastered at the moment? This is the link
Looking forward to hearing your response!
Keep Smiling
Louise
PS If you want to read a post re me pushing beyond my limits for something that meant a lot to me, have a read of this post. THEN you may think I AM the crazy one! π