In this my very first posting of my very first blog it seems in order that I address the ludicrous nature of this task.. As a woman struggling to feed and clothe herself every day the commitment of such an enterprise may seem ridiculous and let’s face it could be an epic failure.
a) how will I find the brainpower to upload any material?
which brings us to the next point..
b) any material.
But hey I love a challenge and God knows I don’t have enough in my life so bring it on…
As I have no clear direction of where this may go I envision a smorgasbord of posts: long, short, personal or general, profound and profane, prosaic to inane, pics, vids, excerpts and playlists.. Who knows?! Whatever I can muster I suspect..
The following article just sums up so well this funny old illness of mine. It says all the things I havnt got the clarity of mind or energy to write.
I don’t usually urge you to read any links I put up here but if you have five minutes please read this.
It will help you to understand me or anyone else going through this so much better and as the article states, it is exactly having this understanding that makes all the difference.
This year I have read more books than at any other time before. Yes I did graduate with an English Literature (and theatre) degree. (What can I say? I favoured other more recreational persuits..)
It may not be anywhere near the volume that some of my friends consume novels ( I know working mothers that still just inhale words) but for me this is impressive. Not least because it is only the second year since becoming ill that I have been able to read at all.
Let’s be clear: my level is still not much above the remedial, my book selections though greatly varied are always basic in diction and require above all a great plot line.
Still. I am just so grateful to have these books in my life.
They keep me company in the early hours when I can’t sleep, keep me sane by opening windows to worlds I cannot access and keep me hopeful of a life beyond the present.
Thank you books.
Here is the 2015 rundown:
The Goldfinch – Donna tartt
The Miniaturist – Jessie Burton
The Ship Antonia – Honeywell
The Bronze Horseman – Paulina Simons
Tatiana and Alexander – Paulina Simons
Americana Chimamanda – NgoziAdichie
We Are All Completely Beside Ourselves – Karen Joy Fowler
A Spool Of Blue Thread – Anne Tyler
The Husband’s Secret – Liane Moriarty
The Versions Of Us – Laura Barnett
I Saw A Man – Owen Sheers
A God In Ruins – Kate Atkinson
The Sunlit Night – Rebecca Dynasty
The Bees – Laline Paul
Villette Charlotte – Bronte
The Improbability Of Love – Hannah Rothschild
Spinster – Kate Bolick
Me Before You – JoJo Moyes
We Are Called To Rise – Laura Mcbride
The Storyteller – Jodi Picoult
My Brilliant Friend (the Neapolitan Novels 1) – Elena Ferrante
Story Of A New Name (the Neapolitan Novels 2) – Elena Ferrante
My Salinger Year – Joanna Rakoff
The Clasp – Sloane Crosley
I recently listened to this clip from an interview with Ste Walker, a young guy suffering with Crohn’s Disease, who was refused access to a disabled toilet because ‘he didn’t look poorly enough’. His Facebook comments on this went viral as he challenged us to consider why we expect illness to have a certain look.
It is something we all do – in a pretty superficial and image based society we make snap judgments based on appearance all the time and particularly when it comes to ill health. It really resonated with me and I imagine anyone with CFS/ME will be able to relate. When you have an illness or disability that isn’t obvious you may not always be treated the way that you would like or in his case get the help that you may need.
One of the first things people say to me when I tell them about having CFS /ME is “but you look so well!” and “Well I’d never know”. An expression of surprise or confusion at best or mistrust often appears as they try to comprehend how this young ‘healthy’ looking woman can really have spent the best part of five and a half years unable to get out of bed. (It doesn’t help that often these occasions are due to a big event – a wedding/Xmas – and I am buzzing on caffeine and wearing enough makeup to land a role in Dallas. If they were to see me the next day without the strength to lift a coffee cup they may retract their words.. I have spilt burning liquid down myself twice this week already: I survived, bedsheets not so much..)
Please don’t get me wrong I would much rather look well than be obviously sickly – I can’t imagine the unwanted attention that can go with some forms of disability – its just that when you have an invisible illness it is easy to give the wrong impression, which can then lead to wrongful assumptions.
What Ste is trying to point out is that you never know what is going on with other people underneath the surface and we should all try to approach each other with compassion and kindness. And take people on face value – or not – as the case may be 😉
Listen here to the brief clip or the interview in full.
As some of the more devoted of you may be aware I have been absent from the blog for a little while. Times are just super tough and posting sadly is just a little out of reach..
I will pop up now and then if I am able but in the meantime just know I am alive and breathing and working hard to get back to you.
As a departing gift here is a golden nugget I just discovered uniting two of my favourite singers from past and present. Don’t say I don’t ever give you anything.
(Warning it is beautiful but emotional in equal measure so best avoided with a hangover.)
This video from the Optimum Health Clinic that dropped into my inbox last week could not have been more pertinent. As my endless struggle to hold back dominates my recovery this clip perfectly describes just why it is so hard for me (and other acheiver/perfectionists like me) to rest and why, strangely, rest takes more strength than pushing through.
It offers a useful insight and is a helpful reminder for any achiever personalities out there aiming to recover from ME/CFS or just trying to slow down but finding it difficult do to. This is me in a nutshell.
The ingrained behaviour patterns that teach us to override pain and tiredness are nearly impossible to ignore. To always keep soldering on so that nothing is ever missed and no one is ever let down. They become part of the very fabric of who we are. To change them is to change our identity.
Not only this but the very notion of taking rest can be seen as appearing weak or failing.
When actually if you stop to think about it the reverse is true.
It takes more guts, bigger balls, to stop and rest. To quiet those voices in our heads and summon all that strength to go against every instinct you know. To use that power and discipline to hold yourself back.
This is the kind of strength of character I need to foster.
But I do need help (I shouldn’t even be writing this now).
So If I ever seem to be overdoing it or you think I am in need of a general reminder, please just ask me the following question:
Dan, HOW BIG are your BALLS?!
It is one that I will be asking myself until my recovery is complete.
(All forms of reminder are welcome: verbal, text, email, pictorial (is there an emoji for balls?!))
I don’t usually use the blog for charitable causes but this feels too important to ignore. The Syrian refugee crisis is not only crushingly immediate but universally relevant. Sometimes however tough your life can be you must be thankful for every single bit of it.
Just watch this music video and see if you are not moved to tears. Plus there’s Benedict Cumberbatch. (As if we needed any more motivation that those two words).
Also here is a link to an article detailing how this charity single was put together in one week only by my idol, hero and general best friend (if in my head only), Caitlin Moran. She has just gone up another step on that pedastool.
Yes one year ago today I posted my very first entry on Melifeinablog! I am officially one year old.
My that year went quick. Whilst we can safely forget the majority of what has passed, there is still a lot to be thankful for.
Most of all I am proud of this blog. Keepng it going has been no small feat and the support has been overwhelming.
Though I have been quiet of late I am still very much here and planning to continue on into my toddler years.
The summer has been a total washout and I don’t just mean the British weather, which is why the posting has almost ground to a halt. As I continue to find my feet and attempt to write without always simply pushing through the pain, it is possible that it may be a while before the pace picks up again.
But please do know that I am still here undeterred, fighting the good fight, and, as always, thinking of you.
Thank you for your continuing support and feedback… for without you, reader, a blog is only half a thing.
*Giftlist registered in various establishments and available upon request
Other Firsts this month:
1st time I’ve watched a box set in a week: House Of Cards, series one. Do I go straight in for series 2?
1st sugar free ice-cream I have found that is made of good stuff and actually tastes yummy. No shit.
1st political party I’ve ever joined. Yes WE can. #Womens Equality Party
1st time booked to go to Devon to see my niece since I’ve been ill. (Now just have to make it!)
1st time have mistakenly had Ocado deliver when not even staying at my flat. Whoops. Has it really taken this long?
1st time got to watch my best mate’s – theatre producer – work in action, via online streaming. #iliadlive. Super proud.
I have become a founding member of the Women’s Equality Party!
Recently set up by Sandi Toksvig and Catherine Mayer it is the first party in the UK to focus solely on equality for women. (As the name would suggest).
See you don’t even need to leave bed to start the revolution! I feel totally bad-ass!
You too can join. Its not just for women. If you belive in equality for both genders and understand that only when women and men have the same opportunities will society as a whole truly flourish, then sign up here: https://womensequality.org.uk
To wet your appetite here is an unrelated but relevant peice about the role of childcare in the workplace. No, I don’t have kids. Or a job. (Yeesh) BUT I hope to have both in the future and this very brief article (4 mins to be exact) raises an important issue, questioning why childcare is still primarily seen as a woman’s concern.
M.E life in a blog 