Ten Years of severe Myalgic Encephalomyelitis – #tenforjen

Jenny Rowbory

Jenny Rowbory, in 2008

Who is your hero? Jenny Rowbory is mine.
 
This is a special blog post to mark ten years of my friend Jenny Rowbory being bedbound with severe M.E. In 2004, she had 4 As at A Level, (including the joint highest score in the country for one of them), and was at university, studying Medicine. She loved athletics, and was an accomplished sportswoman, and one of those people who is amazingly multitalented, whatever they turn their hand to. Then she got a virus in the first term of university – which became M.E.
 
Like M.S., there seems to be a relapsing/remitting version of ME (which I have), and a constant deterioration (which she has). When I first got to know her I found it hard to imagine how her illness could become any worse: she lives in a room alone, in constant pain, unable to speak, paralysed, unable to tolerate light or noise. Since I have known her over the past three years, she has become even worse, and each day she battles to stay alive. Twitter, her only communication with the world, has become increasingly sporadic as she is too ill even to jab out letters on an iPhone.
 
Many people have written recently about how Ebola is a terribly inhuman disease, because you cannot touch the person who is dying. I thought to myself, “I know another illness like that”. Very severe ME is one of the most isolating illnesses I can think of. Jenny cannot be touched without her acute symptoms becoming even more agonising, and even having someone in her room for a few minutes causes her agonising pain and worsening heart symptoms. She suffers from insomnia as part of the illness, so there is very little relief. She has no help from NHS doctors.
 
Today, 1 December 2014, she has been in this situation for ten years.
 
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She is my hero, because, like Job, she endures. We admire those who climb mountains and endure freezing temperatures, and history applauds them. But where are the records and awards for those who climb mountains of pain and isolation, day after day, for decades? Every day that she breathes and eats is a testimony to her feisty and determined spirit, her colossal inner strength.
 
I want to stand with her, mourn with her all the losses. I also want to celebrate the person she is, and all that she has achieved despite such a crippling and tormenting illness.
 
jenny rowbory picShe is a person. She loves Gilmore Girls (which shows her good taste), and Star Trek (which she is to be forgiven for…), and B:witched (a presumed teenage indiscretion), and Adrian Plass books (which are GENIUS), and Harry Potter, and all good poetry.
 
Jenny is an accomplished poet, who happens to be one of my favourites of all time. If you love poetry, you should stop reading immediately and go and buy her volume, Rainbows in My Eyes (Amazon affiliate link). It is incredible, beautiful stuff.
 
Jenny is marking ten years of being ill, and wants to do something constructive. She would dearly love to raise £10,000 for ME Research (which, I can tell you, is much-needed, because the government donate so little to biomedical research into ME). She is doing this by ‘Pounds for Poems’. It has taken her five years to painstakingly (and there is literally pain with every small effort) tap out her poems onto an iPhone – and they are incredible. My favourite is Gethsemane.
 
I want to mark this day and honour her, because she is my friend, and my hero, and because every breath she takes and every moment she endures is honouring to God. I’d love it if you could join me in this.

 

SO – here’s what you can do.

  1.  Go NOW to her page, read her exquisite poetry, and consider giving to ME Research using the link at the bottom of her page or this one here. I’m hoping that ten people might give £10, to mark her ten years of M.E. I know it’s Christmas soon, and pants timing, but I’m hoping that instead of Cyber Monday, this can be Jenny Monday, just this once. If you can only give £5, give £5. If you can give more, give more.
  2.  

  3.  Play #tenforjen. (It will probably annoy her no end that I’ve called her Jen, not Jenny, but it scanned better than #tennyforjenny…) Jenny Rowbory is the queen of lists of fun things, so I’ve created a list of my own. The rules are this: tweet her using her Twitter handle @stroopwaffle and the hashtag #tenforjen, or comment below with your answers to the following favourite thing questions:

 
Over to you:
Answer these #tenforjen questions (based on some of her favourite things)

1. Who’s your favourite Friends character?
2. Who’s your favourite Harry Potter character?
3. Who’s your favourite Gilmore Girls character?
4. What’s your favourite kids’ Christian/praise song?
5. What’s your favourite Olympic discipline?
6. What’s your favourite sport?
7. What’s your favourite animated film?
8. What’s your favourite romantic comedy?
9. What’s your favourite song from the 90s?
10. What’s your favourite childhood toy?

 
Thank you. She is very unlikely to be well enough to reply to your lists and tweets, but I’m hoping she’ll enjoy reading them. 
 
Tweetables:
[tweetit]”Who is your hero? Jenny Rowbory is mine.” Honouring the incredible @stroopwaffle today – read why:[/tweetit]
 
[tweetit]She is my hero, because, like Job, she endures. – @Tanya_Marlow on @stroopwaffle, and chronic illness:[/tweetit]
 
[tweetit]Today I’m playing tenforjen, honouring @stroopwaffle. Here’s how you can play too:[/tweetit]
 
[tweetit]”I’m hoping that ten people might give £10, to mark her ten years of M.E.”[/tweetit]
 
Go to Jenny’s page, read her poetry, and consider giving. 
 

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19 Responses to Ten Years of severe Myalgic Encephalomyelitis – #tenforjen

  1. Emma Allinson 17th January, 2015 at 1:46 pm #

    Hi Jenny and Tanya,

    I’m a bit late to the party, having only recently discovered you both.
    Here are my answers to #TenForJen:

    1. Who’s your favourite Friends character?
    Confession: I’ve barely watched any Friends episodes.
    I know, how can I have missed this show when it’s repeated every hour God sends?
    I’ll go with Rachel, because Monica is too much, and Phoebe is not enough.
    I would never say this about real people, but they are only fictional characters.
    2. Who’s your favourite Harry Potter character?
    Luna Lovegood. She’s just so happy being herself and doesn’t mind what people think of her. Apparently when Evanna Lynch auditioned for the part, she said “If you don’t cast me you’ll be making a big mistake. I AM LUNA.”
    3. Who’s your favourite Gilmore Girls character?
    Never heard of this. Sorry.
    4. What’s your favourite kids’ Christian/praise song?
    Father Abraham had many sons. It went on and on with actions, getting faster and faster, until we all just collapsed into a heap on the floor.
    5. What’s your favourite Olympic discipline?
    Equestrian Eventing, Canoe Slalom/Sprint.
    6. What’s your favourite sport?
    Cycling and running.
    7. What’s your favourite animated film?
    Aladdin! No contest.
    8. What’s your favourite romantic comedy?
    The Holiday. Swoon.
    9. What’s your favourite song from the 90s?
    I was but a child, so I suppose the theme tune to something on CBBC. Postman Pat, Fireman Sam, Thomas the Tank Engine.
    10. What’s your favourite childhood toy?
    Barbie Dream House!

    • Tanya 20th January, 2015 at 4:29 pm #

      Father Abraham! I remember that one! And I’m shocked – SHOCKED, I tell you – that you’ve barely seen any Friends episodes. That’s crazy talk. Your comment to no.9 made me laugh!
      Thanks so much for stopping by and playing #tenforjen 🙂

  2. Carly Ammon 2nd December, 2014 at 6:12 am #

    I wish I had a friend like Tanya 🙂
    Jenny you have real strength! Keep pushing for all of us!
    1. Phoebe
    2. Hermione
    3. Luke and Jess
    4. Jesus Put a Song In My Heart
    5. Figure Skating
    6. Cheerleading
    7. Cinderella
    8. Definately Maybe
    9. Slide
    10. Polly Pockets. The real ones that are super tiny!

    • Tanya 3rd December, 2014 at 6:01 pm #

      Thanks so much for stopping by, Carly, and for your kind words! I know that Jenny will be appreciating these lists. 🙂

  3. Diz Pedrick 1st December, 2014 at 8:22 pm #

    Hi Jenny. Wishing you well, and hoping you are amused by my replies. I’m nearly 60, so totally out of touch!
    1. Who’s your favourite Friends character?
    The smelly cat (can’t stand Friends, tbh, daughter, about your age, used to watch it incessantly)
    2. Who’s your favourite Harry Potter character?
    Mrs Weasley
    3. Who’s your favourite Gilmore Girls character?
    never heard of it
    4. What’s your favourite kids’ Christian/praise song?
    I’m Welsh, so you’d not know the ones I was brought up with Mae’r Iesu yn Geidwad i Mi (Jesus is my saviour)
    5. What’s your favourite Olympic discipline?
    Oh, I’m totally undisciplined! Umm, I admire decathletes for being all rounders
    6. What’s your favourite sport?
    kickboxing – I was at brown belt level until I fell ill
    7. What’s your favourite animated film?
    All the Wallace and Grommit ones
    8. What’s your favourite romantic comedy?
    can’t stand chickflicks – I think I might be the only female who has never seen Mama Mia – I was given a dvd of it, and it’s still sealed in the wrapping! Nearest might be Some Like it Hot (1959)
    9. What’s your favourite song from the 90s?
    Isn’t it only 1986? Not a clue!
    10. What’s your favourite childhood toy?
    Lego!

    • Tanya 3rd December, 2014 at 6:02 pm #

      Smelly cat!! this totally made me laugh. Thanks so much for stopping by and for taking the time to do this – I really enjoyed reading your answers, and I know Jenny will too. 🙂

  4. Mark Allman 1st December, 2014 at 7:42 pm #

    Jenny,

    As a fellow Star Trek fan I thought I’d share with you my most favorite Star Trek episodes.

    My most favorite episode is “The Inner Light”
    followed by:
    “Yesterday’s Enterprise”;
    “City on the Edge of Forever”;
    “Mirror, Mirror”;
    “Measure of a Man”;
    “The Offspring”;
    “Tuvix”;
    “Darmok”;
    “I Borg”,
    and “Ship in A Bottle”.

    I admire how you have persevered through your struggles.

    I wish you well.

    • Tanya 3rd December, 2014 at 6:03 pm #

      Ah, a specialist answer! Thanks, Mark – I’m sure Jenny will appreciate reminiscing over these episodes.

      • Mark Allman 3rd December, 2014 at 6:05 pm #

        You should watch a couple of those… it might change how you feel about Star Trek 🙂

        • Tanya 3rd December, 2014 at 6:07 pm #

          Ha! I doubt it!!

          • Mark Allman 3rd December, 2014 at 6:12 pm #

            The Inner Light; Yesterday’s Enterprise and City on the Edge of Forever are great stories of love, devotion, and sacrifice… I am moved each time I watch them. 🙂

  5. beth Dickinson 1st December, 2014 at 4:05 pm #

    Hi Tanya,
    I have really been enjoying Blog posts, they are very encouraging. I struggle to do lists so sorry not going to ldo the questions. Im sorry that ME is so poorly funded. I suffer from Lupus which has slowly gained more influence and research, It is similarly isolating with fatigue, pain and being super sensative to light. my curtains remain closed throught the summer. I’m sure other peoples prayers have saved my life. I then think thats fine for me but what about my friends it doesnt cure them. So often with these illnesses i tend to pray that the researchers will know which avenue will lead to a treatment. ME sounds where lupus was 30years ago, and i will be praying it doesnt take 30years to catch up.
    So keep fundraising and blogging. i will keep praying cures for these awful illness including ebola will be found. God can use science and technology to bring healing too.
    blessings beth

    • Tanya 3rd December, 2014 at 6:06 pm #

      Beth, thank you so much for this lovely comment. I really appreciate you coming by and taking the time to comment. I have a great sympathy for those on Lupus – have done a fair bit of reading up on it, and I can see the similarities between the two illnesses. It’s really interesting that you think that research with ME is where Lupus was 30 years ago. Just in the last couple of years there have been seemingly exciting developments with small studies in ME, but until we get the big studies to properly silence the hungry psychiatrists, I fear that our governments will continue to pretend that ME doesn’t exist. (that’s my soapbox rant over!)

      “I then think thats fine for me but what about my friends it doesnt cure them. So often with these illnesses i tend to pray that the researchers will know which avenue will lead to a treatment.” – YES – so on the same page with you on this. Thanks so much for stopping by and supporting Jenny – it means a lot.

  6. Emma 1st December, 2014 at 1:19 pm #

    1. Who’s your favourite Friends character?
    Chandler. I love his quick wit and vulnerable side. He’s a poppet.
    2. Who’s your favourite Harry Potter character?
    That’s like picking a favourite child! Gut instinct says Ron though. I love the Weasleys and their wonderful wonky home.
    3. Who’s your favourite Gilmore Girls character?
    Rory. A fellow bookworm. Love her mum too, but Rory just edges it.
    4. What’s your favourite kids’ Christian/praise song?
    For God so loved the World by John Hardwick. Brilliant signs too.
    5. What’s your favourite Olympic discipline?
    Gymnastics. The proper stuff, not the rhythmic wave-a-ribbon stuff.
    6. What’s your favourite sport?
    Again, gymnastics. Love watching it so much.
    7. What’s your favourite animated film?
    So tough! Probably Tangled still. Whilst Toy Story 3 has some amazing characters (Bonnie, Rex and Trixie, Mr Pricklepants, I could go on…) as does Frozen (Anna, Oaken, Kristoff, Sven, again….) Tangled for me has the best story start to finish. Plus it has ‘Chuck’ as lead voice actor 😀
    8. What’s your favourite romantic comedy?
    Not my cup of tea usually, but I love, love, love, About Time. One for the list if you’ve not yet seen it Jenny 😀
    9. What’s your favourite song from the 90s?
    A silly one which Marc and I both enjoy is ‘Cartoons’ from one of the Wow Hits albums. Cartoon characters praising Jesus. Hilarious.
    10. What’s your favourite childhood toy?
    I had a doll I adored and still have, but the thing that got the most hours play? Lego of course!

    Thank you so, so much. What a blessing you’ve been today to so many. Love from another of Jenny’s friends, Emma x

    • Tanya 3rd December, 2014 at 6:09 pm #

      Hi Emma – fabulous to see another one of Jenny’s friends here! Delighted to make your acquaintance. I have a fondness for Chandler, too…

      “Gymnastics. The proper stuff, not the rhythmic wave-a-ribbon stuff.” – this made me laugh!!
      Thanks so much for supporting Jenny on this day.

  7. Pam Smith 1st December, 2014 at 1:18 pm #

    1. Who’s your favourite Friends character?
    Without a doubt, Rachel, because I love Jennifer Aniston’s performance and the way the character develops to maturity through the series.

    2. Who’s your favourite Harry Potter character?
    Hermione – girls rule!

    3. Who’s your favourite Gilmore Girls character?
    Gosh – so many to choose from – I think perhaps Emily Gilmore, I admire her for being who she is without any shame or self doubt. And the interplay between Loreli and Emily is so funny.

    4. What’s your favourite kids’ Christian/praise song?
    My kids loved all the Captain Alan songs when we went to New Wine with their cousins but I can only remember “Now I’m a friend of Jesus and his Spirit lives in me” sang on a continuous loop in the back of the car!

    5. What’s your favourite Olympic discipline?
    I guess swimming – I can’t do it but I love to watch it. It takes so much determination to race when you have to keep dipping your face in the water – NOT my favourite thing.

    6. What’s your favourite sport?
    The only “sport” I can do is personal training with a very understanding trainer, so I guess that’s it.

    7. What’s your favourite animated film?
    The Little Mermaid is probably the last one I watched repeatedly on video with my sons, so that has to be it.

    8. What’s your favourite romantic comedy?
    Not a huge fan of traditional romcom films because everything turns out right in such a contrived way. I like anything with Sandra Bullock in it because the stories usually subvert the usual romcom formula. If I absolutely have to choose it will be Bridget Jones’ Diary which I watch whenever it’s on ITV2 😀

    9. What’s your favourite song from the 90s?
    No idea – I don’t really think it decades for music. Is Last Christmas by Wham the nineties? If so I choose that!

    10. What’s your favourite childhood toy?
    My doll Blondie, who still lives with me, and has the persona of a 1950s barmaid. My dad made up a stupid voice for her when I was very ill and wouldn’t take my medicine and my biggest wish for several years was that Blondie would come to life to be my friend. Sad or what eh?

    • Tanya 3rd December, 2014 at 6:11 pm #

      Pam – you are a complete star. Thanks so much for this list – I know Jenny will love it. Emily Gilmore is my favourite, too! I am also a sucker for Sandra Bullock Rom Coms. She’s such a great actor I think – perhaps underrated because she’s so good at comedy. But did you see her in Crash? She was brilliant.

  8. Tanya Marlow 1st December, 2014 at 10:44 am #

    1. Who’s your favourite Friends character? In the early series, Monica was my favourite character. I related to the uptightness and perfectionism. In the later series, Ross’ and Monica’s parents consistently were the best characters, I reckon.
    2. Who’s your favourite Harry Potter character? Hermione. Geeks forever! Though I also had a soft spot for a Prof McGonagall.
    3. Who’s your favourite Gilmore Girls character? Emily Gilmore. It’s tough, cos I love Lorelei, and in many ways I’m like her, and like Rory too, but I most enjoy watching Emily Gilmore. She’s so deliciously disagreeable, whilst at the same time able to show her softer side, just enough so you don’t lose complete sympathy for her.
    4. What’s your favourite kids’ Christian/praise song? When I was a kid, definitely ‘I’m too young to march in the infantry’. I loved the actions. Yes, sir! I also loved singing ‘I am a C, I am a CH…’ – I liked singing it really fast, and the challenge of spelling it all out in your head.
    5. What’s your favourite Olympic discipline? Trampolining. As a child, we had a trampoline in the back garden, and I loved it.
    6. What’s your favourite sport? Tennis. Watching, not playing. I am a champion watcher of tennis.
    7. What’s your favourite animated film? Probably The little Mermaid, even though now I think it reeks of patriarchy. As a child/teen, I loved it.
    8. What’s your favourite romantic comedy? Notting Hill. One of the most perfect films of all time.
    9. What’s your favourite song from the 90s? Probably Smells like Teen Spirit by Nirvana. Or Silent All These Years by Tori Amos. Oo! Or One Way by The Levellers. I loved them. Dang it all, there were some TUNES in the 90s.
    10. What’s your favourite childhood toy? Probably my Sindy Dolls House. It was huge, and had all the best things in it. Even tiny plastic cabbage and carrots that went into tiny plastic warming trays in this trolley thing, so they could eat with their tiny plastic silver cutlery. Such fun.

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