Considering International ME / CFS / Fibro Awareness Day is fast approaching, I thought I’d try to start a blog-chain where we all get a chance to tell the people in our lives a little about how it is to live with CFS/ME – PLUS also let them in on a few other things they may not know about us.
It’s in the spirit of other posts I’ve seen where people fill in answers to questions to let others learn a little more about them.
This time, however, it’ll be partly a few questions about our lives in general and partly questions about the experience of living with ME / CFS / Fibro.
How it will work is that I will fill out the questions here myself, related to me. All YOU then have to do is copy and paste the whole section and then delete my questions and answer your own.
Then, in order to help build awareness and keep the blog chain going, you would then post the same blog on your site. When you do, let me know the URL and I will add your link to the bottom of this blog post (or create a whole new one depending on how many I get). This way we will have a long list of people’s answers and stories within the answers.
I don’t know if this will work. I’m just giving it a go. So here goes! 🙂
This Is M.E
Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.
As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.
Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you! 🙂
What is your name & how long have you had ME / CFS?
I’m Louise and I’ve had CFS/ME for 21 years at differing levels of severity. I also have developed electrosensitivity (or electrohypersensitivity) since pregnancy 11 years ago.
Where do you live? (Country, State, City – however detailed you want)
I live in Ballarat, Victoria, Australia. I originally come from a small town of around 80 people called Navarre, about 90 minutes drive north-west of here. I’ve lived in Ballarat for 17 years.
Age (if you’re willing to share)
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1. I love Buffy The Vampire Slayer, Angel, Star Trek & The West Wing, among many TV shows. My current favourites are Modern Family and The Big Bang Theory. I also love The Voice and X-Factor. Oh, and Glee!
2. I write poetry and have done since I was about 14. It’s mostly free-form and I usually write it when I’m feeling particularly emotional – sad, angry, frustrated or in love 🙂
3. I really want to learn to sing one song properly and well, and then sing it in public.
4. I spend almost every waking hour working on my blog, websites, coaching, etc trying to create an income for myself so I can become financially independent
5. I really love a band called “Vampire Weekend” that my cousin introduced me to recently.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
1. I’m in pain constantly regardless of how much I’m smiling or laughing or talking. I can fake being joyful very well. The depth of the crease in my forehead is usually the only indicator of how mad my headache is. I also have a bad temper that is made worse by the pain, and my daughter bears the brunt of this at times, which I’m quite ashamed of. Few people know either of these things.
2. Within seconds of sitting in front of a computer (or being in a room with one) or a TV, I get a severe headache which starts as prickly facial and head pain like someone is pushing pins into me, and quickly moves into a more burning, pressure-like pain.
3. Within milliseconds of looking at my smartphone and sending a text or Instagram post or whatever, I get pain in the base of my skull and neck area as well as my face and head (all part of the electrosensitivity that began in pregnancy 12 years ago). I could have a massage every day because my head, neck and shoulders are always in a lot of pain. As it is, I often need a massage twice a week to keep the pain levels manageable.
4. I’ve had a sleep/rest in the mid-afternoon almost every day for the past 19 years. It’s not because I want to, or that I’m lazy, or that I find it fun. It’s because if I don’t, I feel even worse than I already feel. It’s like someone has taken my batteries out, and if I don’t recharge them my body ends up in more pain and more fatigue.
5. I feel embarrassed to say I’m on a disability pension because I don’t look sick, and most people would not even know I was constantly in pain or fatigued. I sometimes feel ashamed of being on a pension and feel that maybe I don’t deserve to be. But I know I do. I know that people living with much less pain and fatigue than me are on such pensions, but because I choose to continue to use electro-magnetic devices in order to attempt to earn a living (and get off the pension), I feel guilty sometimes. Silly, but I do. Why do I choose to keep using electro-magnetic devices if they cause me such pain? Read this blog to get some idea.
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?
It’s a rollercoaster. Sometimes you’re up, sometimes you’re down. Actually, often you’re down, but those are the times when nobody sees you, except maybe the people you live with – and sometimes you hide it from them too. It’s not always a matter of being bed-bound. There are many levels of CFS/ME and many variations in symptoms. You can’t lump everyone into the same box.
What is the most frustrating aspect for you of living with ME / CFS?
Feeling like I’m not contributing to the world and making a difference in the way I really want to. Feeling like every time I seem to be getting closer to that goal, I’m thwarted by a relapse or new symptom. Wondering whether I WILL ever get this business to a point where I’m financially free and wondering if I’ll ever truly be totally healthy ever again.
Anything else you’d like to say before finishing?
I can’t remember what it feels like to be pain free, fatigue-free, indigestion-free and totally healthy. Two decades of my prime years have been lost to this illness, and it scares me to think that I may not even know how to be healthy anymore. On the other hand, I have to believe that I will be totally healthy again, and I continue to strive toward that.
Contact details (if you want to give them) – blog, Twitter, FB etc
Any other bloggers who want to join the blog chain, please copy this and fill in your own answers. Then email Louise@GetUpAndGoGuru.com or send Louise a Tweet so she can link to your blog post in her original post.
So There It Is …
That was an interesting exercise. I found I could have made the second list much longer than the first. I realise I cover up a lot of my illness-related stuff or they are just things that I do in the privacy of my own home. I also realise that because I’m pretty much an open book in other areas of my life that there is very little other people in my life don’t know about me in a general sense. Interesting!
I’d Love You To Join In!!
Please join in this simple, yet hopefully interesting awareness campaign. When you’ve finished your blog, post the link on your personal Facebook wall or email the link to family and friends. Or just post it on Twitter if you’re not feeling that game.
If there’s any other bloggers who would like to add a list of participating bloggers on their website, please let me know. It’d be great to share the love.
And if there’s anyone who’s not a blogger but would like to participate, I’ll create a special page where I will post your “This is M.E” article. All you have to do is email a Word document to me at Louise@GetUpAndGoGuru.com and I’ll let you know when it’s up. Alternatively you could just post the questions on your Facebook page or if you’re a bit shy, just get behind other people who put up #ThisIsME posts and retweet them or post them on Facebook or other social media platforms.
I am also joining with Sally at SallyJustMe.Blogspot.com.au who is orgnanising a #May12BlogBomb where bloggers all post a blog about living with CFS / ME / Fibro on May 12. If you do a #ThisIsME post, I will post the link here, but Sally will also link to my #ThisIsME blog posts and I will link to her #May12BlogBomb posts. Read her article here about #May12BlogBomb.
I don’t see why you couldn’t do a #ThisIsME blog post and then schedule it to go ‘live’ on May 12 – therefore being part of both the #ThisIsME awareness campaign and the #May12BlogBomb. Wins all round!! 🙂
Looking forward to reading all your #ThisIsME posts. Use this hashtag on Twitter or Facebook to encourage more people to take part and to help people find #ThisIsME posts. And please let me know when your post is up and I’ll link to your page!! (and as Sally will be linking to my page, it’ll be like a double link for you!)
Keep Smiling All 🙂
#ThisIsME Posts By Other Bloggers
I’ve now created a whole separate page for all the #ThisIsME posts because I believed they deserved a special page. I’ve been so incredibly moved by all the stories within the #ThisIsME blogs, and even moreso, incredibly inspired by the people behind the stories.
What outstanding individuals we have within the ME / CFS / FM community. Just a sampling of the millions of outstanding individuals affected by these illnesses worldwide!
Go to THIS LINK to get links to all the other #ThisIsME blogs.
Thanks to all who supported and participated. I will be continuing #ThisIsME over time, so if you or someone you know still wants to write a #ThisIsME post, please do so and let me know when you do!
TipsForME.Wordpress.com – Posted 1 May 2014
SallyJustME.Blogspot.co.uk – Posted 2 May 2014
BeingTheImperfectMom.com – Posted 5 May 2014
Granualie.blog.de – Posted 7 May 2014
MyChronicLife.com – Posted 9 May 2014
fibromyalgia-dee.blogspot.com – Posted 9 May 2014
AllanCDickinson.Wordpress.com – Posted 10 May 2014
Freckles-And-All.Blogspot.co.uk – Posted by Faye Savory on 11 May 2014
MeMichaelAndME.Blogspot.co.uk – Posted by Laura on 11 May 2014
Guest Post by Katherine Wall on GetUpAndGoGuru.com – Posted 12 May 2014
For More go to link mentioned above!