Yes, it’s International ME / CFS / FM Awareness month again, and I’ve decided to once again run the #ThisIsME blog chain that was so successful last year. (See links at bottom of this post!)
Below I’ve basically just copied and pasted the post I did last year, just with a few updates.
As I believe there are multiple answers to each question, I think all of us who participated last year could still answer the same questions as 2014, just with different 2015 answers.
Please share this with all your ME / CFS / FM / Spoonie network. It doesn’t take much to take part in, but is something that I believe is extremely cathartic, but also useful to others with these illnesses.
May this year bring you health!!
#ThisIsME 2015 Edition
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 / Fibromyalgia.
How to take part
- 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 and also create whole new one depending on how many I get – like I did last year here in 2014.
This way we will have a long list of people’s answers and stories within the answers.
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). A new name that has been put forward in recent times is Systemic Exersion Intolerance Disease (SEID) (love it or hate it as you may!). 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 on to 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 22 years at differing levels of severity. I also have developed electrosensitivity (or electrohypersensitivity / electro-magnetic hypersensitivity – another one with no agreed-upon name) 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 18 years.
Age (if you’re willing to share)
42
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1. I’ve posted a photo of something I’m grateful for for the past 485 days as part of a #365Gratefuls project I started on January 1st 2014. Once I did 365 days in a row, I just found I couldn’t stop. It felt like breaking the chain, and I must admit that forcing myself to find something I’m grateful for every day AND find an image that represents that, has helped me focus on all the things I have to be grateful for as opposed what I’m NOT so grateful for. My photos can be seen on Instagram – louisebibby72
2. I’ve been addicted to live musicals since I went to see “Cats” in Melbourne when I was 15 (1988). Since then I’ve seen all the Andrew Lloyd Webber musicals, and Les Mis (on the West End – and many times more), and pretty much every musical I can manage to afford tickets to. One of the highlights was seeing Hugh Jackman in The Boy From Oz at the Melbourne Tennis Centre. His ad-libbing and audience interaction just made me adore him more!
3. I have eclectic music taste. I love Bon Jovi, U2, Jewel, Alanis Morisette, along with Enya, classical music and even some Eminem. I think I could find a song on most albums that I like. I love lots of the modern stuff too. Sia’s Chandelier is magic. My free 6 months of Premium Spotify that came with my new iPhone is my greatest love right now!!
4. I wrote a 200 page A4 full-colour book about the 100 year history of my hometown football (Aussie Rules) and netball clubs. It took me 2 years of research, involving indepth video interviews with many people, trawling through old newspaper articles, watching old videos and talking to lots of people. It then took me 12 months to write. It’s one of my proudest achievements but it nearly killed me from a health point of view. I love my home town of Navarre and the community there, which is why I pushed myself to do it for them. I’m also a perfectionist, so what could have been a 50 page booklet turned into a full production. I’m now editing for a reprint … and I’m taking ages to get it done!
5. I extended the home loan on my house last year, hired 2 virtual assistants in the Philippines, and threw myself fully into creating an income online that will set me and my daughter up financially for life – that is the aim anyway. It’s the only way I see of ever becoming financially independent, and so I’m throwing every bit of energy, time and money into exploring the various avenues of passive and active income online.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
(I’ve just read these answers from last year and they all still stand – unfortunately! So I’m leaving these ones as is. Most people in my life STILL wouldn’t know all this. It’s ok that they don’t, but it’s kinda nice to just put it down on ‘paper’ here. I rarely talk too much about it. I don’t get it, so how are others supposed to??)
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?
2014 – 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.
2015 – It’s a constant challenge. I don’t often like to use the word struggle. It’s a word I’ve tried to take out of my vocabulary in relation to illness because I think it can bring me down more. But it’s a word others understand, so I use it here. It’s a constant struggle. Getting up in the morning to take my daughter to school when I’m exhausted and in pain. Getting up from my afternoon nap to pick her up after school when I’m exhausted and not rested enough. Doing all the Mum stuff that I feel I need to do, and doing it as a single woman. Doing all that while in almost constant pain and fatigue is hard. Very.
What is the most frustrating aspect for you of living with ME / CFS?
2014 – 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.
2015 – I could just say ditto from 2014, but that’d be a bit boring. It’s frustrating that in order to pursue the natural health treatments that I truly believe will see me become well again I have to spend so much money. Just maintaining my body and health in order to live a semi-normal life is beyond my budget, but I have to do it or I can’t function at all – regular massages, chiropractic treatments, supplements, healthy food. And then there’s the treatments like I’m on at the moment which involve a range of liquid herbs, minerals, vitamins and a strict diet regime – along with the consultations with my chiropractor/kinesiologist/herbalist (all one person thankfully!). It all costs so much – well beyond my pension – and it means I am constantly using my credit card, then stressing over how I’m going to pay it. But the alternative is to stay the way I am now. So I choose the debt and stress. Unfortunately many, many people in my situation don’t have a credit card or supportive family, so these things aren’t even an option for them. I wish that the medical profession could work more in alignment with alternative therapists, and that the government would assist us more to be able to afford holistic treatments. A holistic health system is my dream – and probably my Utopia! 🙁
Anything else you’d like to say before finishing?
2014 – 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.
2015 – In the interests of finishing this post I WILL say ditto for this one. I truly can’t remember what it’s like to feel totally healthy and pain free. That makes it hard to visualise, but I still try. I believe I will be well again. I’ve been saying that 22 years, but I’m nothing if not an optimist
Contact details (if you want to give them) – blog, Twitter, FB etc
Blog: www.GetUpAndGoGuru.com Twitter: @GetUpNGoGuru Facebook: facebook.com/GetUpAndGoGuru Instagram: LouiseBibby72 Pinterest: LouiseBibby
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.
#May12BlogBomb
I am also joining with Sally at SallyJustMe.Blogspot.com.au who is again 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 🙂
Louise
#ThisIsME Posts By Other Bloggers From 2014
http://www.mecfsselfhelpguru.com/2015/05/this-is-me-2015.html – Posted on 10 May by Julie at MECFS Self Help Guru
#ThisIsME Posts By Other Bloggers From 2014
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 from 2014. I will update this post when the 2015 posts are up, and will create a separate page for those posts like I did last year.
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!
Keeps Smiling
Louise
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!