This Is M.E.
I am taking part in Louise Bibby's #ThisIsME blog chain, aiming to get the word out about ME, as May is ME/CFS Awareness month. You can find out more on her blog: GetUpAndGoGuru.com
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 Jess and I’ve had CFS since September 2009 (just over 4.5 years) and have been diagnosed since March 2010.
Where do you live? (Country, State, City – however detailed you want)
I live in the UK
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 am a keen animal-lover. I have had many pets in the past including degus, guinea pigs, hermit crabs and hamsters
2. My dog is the centre of my universe! (OK, most people probably already knew this..)
3. I have a serious sweet-tooth. I love sweets and chocolate!
4. I have played multiple instruments over the years: oboe, piano, tenor saxophone and ukelele
5. I have lived in 4 different counties so have friends scattered across the country (particularly as many have moved for Uni/work too!)
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS/ME:
1. I never, ever get a break from my symptoms. They are constant and intrusive.
2. I am no longer able to look after myself- I would currently be incapable of living independently.
3. I found talking about my illness face-to-face *incredibly* difficult when I first got ill.
4. I still find the question "what's CFS?" very difficult to answer- there is no simple explanation, and it's easy to end up trivialising it by giving a poor response.
5. I still dread hospital appointments. I get at least a little bit nervous before each and every one.
What one thing do you think most people wouldn’t know about living with ME/CFS that you’d like them to know?
ME/CFS has a huge spectrum of severity. Some sufferers are paralysed, entirely bed-ridden and tube fed. Others live a fairly ordinary life and their illness has little impact on a day-to-day basis.
What is the most frustrating aspect for you of living with ME/CFS?
The limitations. Not being able to do what I want, when I want, and needing to spend so much time in bed. If I push my limits, I seriously pay for it.
Anything else you’d like to say before finishing?
A big thank you to everyone in my life that helps me through every day, particularly the difficult ones!
Contact details (if you want to give them) – blog, Twitter, FB etc
So There It Is … #ThisIsME #May12thBlogBomb
Info from Louise on joining in (for other sufferers):
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 are 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.