Today is M.E. Awareness Day. As part of this, I'm answering the questions about me and M.E. from the This is M.E. blog chain (http://www.getupandgoguru.com/m-e-mecfsfibro-awareness-day-2014-blog-chain/). So here we go:
What is your name & how long have you had ME / CFS?
I'm James Cooper and I've had M.E. for over 20 years.
Where do you live? (Country, State, City – however detailed you want)
I live in Minehead, Somerset in the UK. I was born and grew up in Enfield, North London but moved down here about 12 years ago.
Age (if you’re willing to share)
34 and 50 weeks (so if anyone wants to get me anything for my birthday, you're more than welcome to - my wish list is here!!! http://www.amazon.co.uk/gp/registry/wishlist/VEJHL52H7567/)
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1. I play the bass, ukulele and am learning the mandolin. (I also failed grade 1 piano...) I love music of all sorts, but my favs are bluegrass, early/renaissance/baroque music and loud rock!
2. I'm a big fan of some rather unusual sports (for the UK)! Forget football (the type with the round ball) give me American Football (NFL= Raiders; College = Clemson), Baseball (Bluejays), Cycling, Biathlon and Ski-Jumping any day!
3. I'm a Christmas nut and run one of the biggest Christmas sites in the world : http://www.whychristmas.com it takes up pretty much all of my Nov and Dec and in Dec 2013 it had over 6.5 million page loads!
4. I'm a huge sci-fi/fantasy fan and have seen all the episodes of Star Trek: The Next Generation and Deep Space Nine at least 3 times. I've also read The Lord of the Rings twice.
5. I'm an Apple fan boy - there are 10 Apple devises in the room I'm writing this in (including the Mac Book Pro I'm typing this on!).
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
1. If you ask me how I am, I'll probably say "oh, I'm fine" when frankly I'm feeling like $%&@! It's just easier to say that than try and explain things...
2. I have no 'real' educational qualifications. I got M.E. during my first year of Secondary (High) School. I didn't go to school at all for a couple of years at the start on my illness. I then had a home tutor for a few hours a week for a year or so and then went, on and off, to a school for disabled children. So I got no GCSEs. I went to a local college (community college) and did a 2 year course over 4 years and got a GNVQ in IT. It's worth a couple of A Levels but isn't really recognised as such. But that hasn't stopped me running my own web design business for over 10 years!
3. I'm yeast, nightshade and lactose intolerant. This means I can't eat or drink: 'normal' bread (hurrah for soda bread and tortillas), cheese, alcohol (boo), potatoes, tomatoes, peppers, chilled, aubergine (egg plant), or things with pretty much any cows milk in them (hurrah for goats milk). So no chips, crisps or pizza for me! I've also never been drunk but have had a quite a few hangovers... After one yeast/candida/blood alcohol test, a nurse described me a 'walking distillery'!!!
4. I have to have at least one rest in bed during the day - every day. I normally have 30 mins to and hour after lunch, but I also often need one directly after breakfast (to recover from getting up) and in the early evening, (to give me energy to do things in the evening - even watching TV). I can also only concentrate for about 45 mins at a time (when in doing pretty good).
5. One of my most annoying/obscure symptoms are right side muscle spasms. These generally happen when I'm really tired and only really my family only ever sees them. When I have them, my right arm/leg and head move around violently with a mind of their own. I've punched and kicked walls (and people!) and thrown things across the room (a couple of mugs and a biscuit tin never recovered from that!). The attacks can last from a few mins to several hours - really not fun.
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?
You might say 'I feel tired' but you really don't know what tired is! Waking up after a full nights sleep feeling as tired as you did when you went to bed - now that's tired! It's a tiredness where every cell of you body just wants to sleep.
What is the most frustrating aspect for you of living with ME / CFS?
It affects EVERYTHING! I can't remember what it's like to be 'normal'. From simply popping down the shops to having any sort of social life, everything you take from granted is taken away for you.
Anything else you’d like to say before finishing?
Please don't think I'm just moaning here. Having M.E. is a complete and utter PITA but I'm mostly a very happy guy. I love running my web design business and being online with people from all over the world.
I don't often openly talk about my M.E. and what life is really like. Hopefully this will contribute to all the other posts and things raising awareness of this mostly hidden and misunderstood illness.
Contact details (if you want to give them) – blog, Twitter, FB etc
I'm @jpc101 on Twitter; my web business is: http://jpc-design.com and I write for the ChurchM.ag blog.
- University of Northern ColoradoSpeech Communication & Media Studies
- Aims Community CollegeMass Media Communication
- Open ChurchPrograms Director, 2015 - present
- ChurchMagEditor, 2011 - present
- Finding JusticeEditor, 2013 - 2015
- DYECASTINGAudio Engineer, Web Design, 2010 - 2012
- 8BITEditorial, 2011 - 2013
- American Center for Law and JusticeProducer of Jay Sekulow LIVE!, 2004 - 2010
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