This guest post is by Katherine L. Wall, who does not have her own blog, but wished to take part in the #ThisIsME ME /CFS Awareness blog chain. Thanks so much Katherine. Your post is another honest, illuminating insight into the life of a person with ME /CFS.
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. ME / CFS / Fibro 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! 🙂
1. What is your name & how long have you had ME/CFS?
My name is Katherine L Wall & I’ve had ME / CFS for 16yrs
2. Where do you live?
I live in East Riding of Yorkshire, England – On the coast in an old fashioned seaside town (Prince of Wales & Duchess of Cornwall visited last year)
I’m 39 but in September I’ll be Naughty 40 🙂
4. 5 things about you that the people in your life probably don’t know? (Non-illness related)
1. I’ve always been a gamer chick at heart since getting my first hand-held game in 1981 – It was a Mini Munchman (UK version of Pac-Man). I still have it. Since 2008 I’ve been watching a gaming podcast/broadcast 4playerpodcast (webpage 4playernetwork.com), they got me back into loving video games and the guys/gals are the best bunch of people.
2. Predominately my diet is Vegetarian – At the age of 3 I couldn’t eat any fish, then when I was 11/12 I went off eating Red Meat (this is why I treasure my parents as they didn’t bat an eyelid – just accepted and looked for alternatives)
3. I love Diet Cola, it’s my one weakness and it’s the only thing I drink other than occasional pot of Earl Grey/ Lapsang Souchong tea (you can add butter & salt to make tibetan butter tea)
4. I’ve been tracing my Paternal/Maternal Family Tree (which keeps me busy). I’ve traced my family through to France (Normans & Franks), Ancient Ireland, Mercia, Scotland (Picts), Sweden (Vikings), Ancient Egypt & Jerusalem
5. Despite my age I am a big toy collector, especially tigers
5 things about you that people in your life probably don’t know? (illness related)
1. I have to use a 4-wheeled walker when I go outside. It has a seat so I can rest when I need to.
2. I go through different sleep phases – I sleep for 12/15 hrs, then it can switch to 6/8 hrs. Then there are times where I don’t sleep at all. The most I’ve not slept for is 3days.
3. Muscular/Skeletal pain in my lower back & hotspots up my spine are what affect me the most physically – The painkillers I take probably take away 70% of the pain & it also stops my body from jolting (looks like I’m having a fit)
4. Brainfog – this is with me day in day out in various degrees. This can make me feel tired, dizzy, speech can be impaired & concentration is low.
5. Other things that are going on with my body – some related to ME/CFS: Type II Diabetes(Genetic from Paternal line), IBS, Hiatus Hernia (part of my stomach is over my diaphragm), Skin Allergy (Hives), Bladder weakness & Hair loss.
What one thing do you think most people wouldn’t know about living with ME/CFS that you’d like them to know?
That this is a real illness, and up until now there is no known cure. Also that it effects millions of people world wide – young, middling or old – this illness has no boundaries.
What is the most frustrating aspect for you living with ME/CFS?
I hate when people think that this is a mental illness. I believe from my own experience that ME / CFS is a physical disease -sigh- Yes I agree there are times when I feel low, especially when the pain is bad, but I wouldn’t call it depression. Well really wouldn’t anyone who had an incurable disease feel freaking low 🙂
Anything else you would like to say before finishing?
I want to send lots of love & light to all who are affected by ME / CFS be it patient or carer.
Keep Calm and Carry on Fighting 🙂
Katherine L. Wall
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 will be continuing the #ThisIsME project beyond May 12 because I think the information we are getting from these blogs is great for newly diagnosed people with ME / CFS / Fibro and others who want to feel they’re not alone.
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
GetUpAndGoGuru.com – Posted by Louise 30 April 2014
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