Sunday, 27 February 2011

Why I Named my Blog After Emily Dickinson's Poem About Hope

One of the things I find the most difficult about dealing with the difficulties, complexities, emotions and humiliations of my daily life is finding a reason to actually do so. Over the last 15 years, between my M.E. and a broken, violent, emotionally abusive marriage (& subsequent divorce), it's been very hard at times to keep pushing myself to live, to survive - never mind to thrive! To let myself have those moments of hurting & loneliness & brokenness ... but not to let them define me, or the course my life takes. Truthfully, it's a battle, every single day of my life. There are days when if it wasn't for the people in my life who love me, and whom I love, I could simply give up. Hope, for me, has changed from being a type of luxury into being that last rope that connects me to life - so I hold on with everything in me, and try to keep breathing!

This beautiful image was created by Baby Joan - Click here to browse her work
This Gorgeous image is copyrighted to BabyJoan
I can't tell you how being confined to 4 small walls shrinks your focus, too. The tiny things become the huge things, somehow. And that's hard in some ways of course ... but there's also a great joy that can come out of it too, because suddenly you notice all these things that in a busy, active life just aren't even on your radar! I mean, what busy person regularly pays more than a passing thought to a laugh, a small act of kindness or compassion, the love of a loyal friend, a ray of sunshine through the curtains, the beauty of an object they've seen a million times over, sitting on the shelf in their bedroom - or even the simple ability to take a shower and be clean?? But when you're bedbound longterm, and your world shrinks down to a couple of rooms, and (mostly) one person, those things become the centre of your life - and they somehow shield you, just a little, from the pain & reality of your life.

Am I truly happy? Honestly, no ... but I have happiness in my life ... and when I manage to grasp onto those those tiny, beautiful, hope-filled things, I'm choosing to not just live, but to do anything I have to do find and keep that small measure of happiness. It's that hope which inspired the name of this blog : The Thing With Feathers.

The name is taken from an Emily Dickinson poem, which beautifully summarises the truth that it's in the centre of life's storms that hope becomes the sweetest, the most real & constant.

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

This beautiful image was created by Erin Leigh - Click here to see her blog or browse her work
This piece of art is used with kind permission from Erin Leigh

What ways have you guys found to hold onto hope in the middle of life's storms?

Are there specific things which give you a spark of hope each day?

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Wednesday, 23 February 2011

There Will Never Be a More Beautiful You!

Thoughts on Negative Self Image

I was browsing the net yesterday and noticed one of those ad's for some kind of photo enhancing software, where there was a photo of a woman before and after they had manipulated the image. God it made me sad ... and so angry! In the first photo, the woman was beautiful and natural - and they'd taken that image and taken away everything that made her, her - turning the whole thing into something completely unattainable (they even removed her freckles!!), and quite honestly, nowhere near as beautiful.

What kind of a world do we live in when we're teaching our kids, not to mention ourselves, that they can never be beautiful??!!?? Where we believe that the photo's on the front of Elle or Vogue are real - that the models in the images actually look that way in real life. It teaches people lies. It teaches us (guys, not just girls!) to hate our own bodies!!

'I Won't Eat' Anorexia Nervosa
And it's not just the media to blame either. People are cruel to each other, from childhood right the way up to old age. Kids are teased, bullied, & abused at school (and even at home!) for being overweight, 'ugly', for not having the right clothes - for being different in any way, basically. Tiny kids as young as 5 or 6 are getting eating disorders because they believe people see them as fat, ugly, & disgusting - and they go on to be cruel to themselves, repeating all that same rubbish within their own minds, over and over again, for years - sometimes for a lifetime!

I've had body image issues, along with self esteem issues in general, since I was in infant school - that's kindergarten for you American's. I'm 34 now, and I still hate my body, my face, my weight, myself!!! I still don't know if what I see in the mirror is what I really look like! Schoolyard bullying started the whole thing off. For me, I was different purely because my family were Christians. I was isolated, degraded, and punished because I wasn't like the others. I was bullied in FIVE different schools, right up until age 18 - and every single one of those bullies used taunts about my physical image as an arrow straight to my heart.

Image © Christi Nielsen - Distorted Body Image

And guess what? I went on, only around 4 years later, to marry a man who didn't know how to love me, and who repeated over and again all those messages the bullies at school had sent my way - only more severely, more violently - & with an even more damaging result. I didn't even realise for a long time that the things he was doing and saying to me weren't ok, because I'd spent almost my entire life being treated like that!

This man, my husband, the man who I loved and who I thought loved me, encouraged me to take laxatives so I'd lose weight; & he often refused to have sex with me without my being hidden under a sheet, with the lights out ... and it made me feel such deep, traumatic shame about myself - I can't even describe it to you. I hated myself!! And you know, I wasn't that fat, or that 'ugly'. I had some nice features, actually. I can look back now and say, ok I wasn't a beauty queen, but I wasn't that bad - and I made a lot of effort for him - but nothing was ever enough. Because the issue wasn't with me - it was with him

I think back to that time in my life now, and I think my view of myself was so broken. (I think it still is broken, though perhaps not quite so badly.) I think societys view of me/us/you is broken. And I'm angry at myself for letting other people, and the media, tell me how to view myself - not to mention angry at them for treating me so badly. I don't know what the answer is. I don't know how to change how we view & treat each other & ourselves. I just know that I don't want to live like this anymore. I don't want to look in the mirror and see some ugly freak looking back at me - I just want to see me.

It's National Eating Disorder Awareness (NEDA) in the US this week, and one of the featured organisations is Operation Beautiful, whose goal is to end negative self talk, one person & post it note at a time! They encourage women to leave encouraging notes on bathroom walls, for other women to read. When you see the huge amount of notes posted on their site, it somehow gives you faith in the human race again. So - post a note, take a photo, and send it to Operation Beautiful. You might just change someone's day, or even their life!

I'm confined to these 4 walls, so this is my post-it-note to all of you!

You are beautiful. You are unique! Don't ever tell yourself otherwise!

We do not need to change our bodies; we need to change the rules.
~ Naomi Wolf ~

Small addition to original post :

Please also check out this music video which I happened upon after posting this blog this morning. It's by Jonny Diaz, and it's called 'a more beautiful you' - absolutely perfect for this post!

I've had some great feedback on this post so far - just wanted to say thank you! It wasn't easy to write about some of it ... but it was well worth it! :)

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Tuesday, 22 February 2011

High Hopes for Feature Documentary 'What About ME?'

I still have high hopes for this feature documentary, which is currently in production, & plans to investigate Myalgic Encephalomyelitis, and all the politics, research, & intrigue around it - not to mention the terrible history of abuse M.E. patients have had to suffer over the years.

There will apparently be a chance for people to share their stories, soon - keep an eye on the What About ME website, or their Twitter feed.

Check out their latest teaser trailer now :

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Sunday, 20 February 2011

Dental Emergencies! What do you do when you're bedbound???

I've been thinking a lot recently about how there are so many disadvantages to being confined to your bed with M.E. that healthy people would never even consider!

Right now, I have a bad toothache. One of my wisdom teeth broke badly, months ago. Now, if I was one of my healthy friends or family ... actually, even semi-healthy, I could just zip down to my dentists, and get it pulled tomorrow! No problems.

Woman with Toothache - How does a Bedbound M.E. patient get to a dentist?

Not for me. For the last few months I've survived on a couple of visits from the domiciliary dental service, who have put in temporary fillings - there's little else they can do. The last one fell out right before Christmas ... and I've been so ill since then that I haven't even been able to deal with a quick home visit from the dentist. So, predictably, the tooth was eventually going to start causing some major pain. And it looks like now's the time it's going to start playing up.

What to do??? Obviously I'll have to get the dentist service to come see me ... but I KNOW this tooth needs more than just a temporary filling. In fact, I'm not sure if it's not broken so badly now that that might not even work temporarily. But, I have to try at least. It will make my symptoms flare up to have to deal with a) having people visit me here, and b) messing my sleep patterns around, because my body clock is reversed and I sleep in the day. But it's either that or this toothache is going to get worse and worse. Especially with it being a wisdom tooth.

If they can't do a filling, or if it doesn't work, I honestly don't know what I'm going to do. I won't, I suppose, have a choice but to find a way to drag myself to the surgery, deal with sitting upright, in a busy, noisy, bright, overwhelming, germ filled waiting room, (it's a dr's surgery too) in order to get it pulled. God only knows how I'd cope with that ... or what kind of relapse it might cause afterwards, not just from leaving the bed/house but also from the trauma of the treatment itself (especially as I have bad problems with my TMJ joint (my jaw) which makes dental treatment really painful)! I still haven't recovered from ONE family day at Christmas, 2 months ago, and I didn't even leave my bed for that.

So yea, there are so many things that healthy people wouldn't have to give a second thought to, that are major missions for people like me - especially with the post-exertional issues that come with M.E. - this just being one example! I wish more people understood what life is like for us.

Anyone have any experience with situations like this, or ideas on the best way to deal with it? Has anyone ever had a dental surgery 'rush' you through the people waiting so you don't have to sit in a waiting room for ages, or give you a room to rest while you wait, or something??

Twitter Responses
From Pantoeffelchen, who send over a really good idea for if my surgery isn't able to rush me through waiting, I could perhaps lie in the backseat of a car and have them come get me when they're ready for me. Definitely could help at least, especially if I brought my body pillow etc in the car.

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Friday, 18 February 2011

Sweet Film Short "Validation" with Hugh Newman

Can't we all do with a little validation in our lives? ;) This short film left a really big smile on my face - so just for kicks, I'm sharing it with you too. Definitely worth 15 mins of your life!

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


How should we deal with this latest psychiatrist & media attack on M.E. patients??

So, the new Pace trial results were released online in the Lancet tonight. Yet another UK trial carried out by psychiatrists, with a patient population made up of people with the umbrella diagnosis of 'CFS', and, I might add, not including any patients who are severely ill - which predictably concluded that Cognitive Behavioural Therapy & Graded Exercise Therapy are the best treatments for ME - and in fact can even result in a complete recovery!

The study was based on the premise that in ME, the persistance of symptoms is caused by 'wrong illness beliefs' (ie believing you're ill when you're not), causing a fear and avoidance of activity, resulting in a deconditoning of the body due to lack of activity. (A premise which is not only completely ignorant of reality, but also deeply insulting!) You may at this point wish to note expert Dr Paul Cheney's deep concerns about graded exercise therapy, and Professor Hoopers Response to the PACE trial.

Honestly, my first reaction to these results was along the lines of 'same old, same old'. I mean, it's basically the same stuff psychiatrists, the government, and the benefits system in the UK have been harping on about for years now. I can't say it doesn't affect me, but you try to grow immune, you know?

Then came the storm of media articles, links popping up everywhere on twitter, and boy did my temper become engaged!!! I swear, my blood pressure must have doubled within seconds - all I think rushing immediately to my head, and perhaps beginning to boil while it was at it. I was fuming!

Fuming about the Media's portrayal of M.E. & the PACE Trial!!

According to the hair-raisingly insulting title of The Independent's article, we should all just get out and exercise, and we'll be fine. Oh, and our illness is marked by "poor memory and concentration, disturbed sleep, aches and pains and disabling fatigue" - Oh yes, that perfectly sums up this life-destroying illness, doesn't it!!

The BBC's article was little better. Here they summed it up as 'Brain and body training treats ME'. Here our symptoms are described as mere 'tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep'. If only!!!

The New York Times, thankfully, had a slightly more cynical & realistic view of the trial. (though this will make little difference for us here in the UK, it is nice to see!) It was a fairly balanced article, clearly showing the short-comings of the trial.


It took me quite some time to calm down after reading these articles. I don't often get quite so affected by these kinds of things, but for some reason it really caught me off guard tonight. I was actually on the verge of crying, I was so angry.

I think ... I think I'm just so tired of all this. The politics of this disease are as exhausting as the illness itself - and there's something really very wrong with that picture! We shouldn't have to fight for the right to be respected, to be valued as members of the community, and to have biomedical research funded into our illness.

What really upsets me about media like this is the influence it has on how the general public see M.E., including of course our friends and family. There's already enough of a problem with misconceptions and wrong & unfair judgements on us. It's heartbreaking to think of all the people out there who are so desperate for support and understanding from their loved ones, and instead receive impatience, lack of understanding, rejection, and even downright cruelty. I've been on the receiving end of that myself a hundred too many times.

So what to do now? Well, the only real option, given that I'm not well enough to do much to actively fight this situation, is to put my feelings away in a box and try to move on, move past, and not live in this bitterness. Try to breathe again. How else are we meant to be able to deal with this crap?

Warning : Compressed Anger!!!!
Warning, Compressed Anger!!!

Question for readers of my M.E. blog : How are you coping with the PACE Trial results?

How are you guys feeling about this situation ... and how do you deal with those feelings in this seemingly never-ending bombardment of disappointment

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


Thursday, 17 February 2011

Welcome to my life!

Note, April 2011
This was the first blog I ever wrote here. It was rather clumsy and didn't really say everything I wanted to say, so I re-wrote it and put it up as a page on my blog instead, once I'd had some time to get used to things! You can see the revised version by clicking on the 'My ME Story' tab at the top of my blog. :)

I'm taking comments here for the page, because comments are turned off on the pages themselves. Thanks for reading! I appreciate every single one of you!

Hi! Welcome to my sparkly new, admittedly slightly strangly named blog. :) (see sidebar for a brief explanation)

I've been putting off posting for days now. Partly because my brain fog's been so bad, but in truth, mostly because I've been terrified of posting. Blogging is scary, lol! I feel like I have a lot in my heart that I want to say ... but whether or not it will be interesting to anyone else, only time will tell!

So, I thought I'd start by just introducing myself, and telling you a bit about me.

15 years ago I was a relatively happy nursing student, working night and day to qualify. I had friends, a life, and a purpose. I was, arguably, a workaholic - definitely type A personality, lol. I was working 5 day a week shifts, running a Sunday School at my local church, involved in lots of other projects, plus of course doing my uni work. I didn't have a spare minute to myself most days.

I was at work one day, on an Ear, Nose & Throat ward in the children's hospital, when I very suddenly started feeling very, very ill. I was trying to just finish my shift so I could find my way home on the bus and collapse in bed, thinking that I must have a chest infection or something coming on. (Those are regular occurrences in my life due to having the wonderful combination of asthma, & a crappy immune system) I remember I felt so extremely exhausted that I could hardly hold my head up. I was bending over my paperwork at the nurses desk when a nurse standing behind me uttered a startled cry and started looking all worried. Turns out I had a gland literally the size of a golf ball on the side of my neck. Lovely.

I somehow managed to get home, and spent the next several months barely leaving the bed or sofa, and just about avoiding being hospitalised, with my housemates looking after me as well as they could around their own busy lives ... slowly getting more and more behind on my university course. It was glandular fever. And believe it or not, this was the second time I'd been hit by it in my life - first having had it when I was in my mid teens, directly after a bout of chicken pox. Again, I had had chicken pox before, as a baby. Now, you're not meant to be able to get glandular fever OR chicken pox more than once in your life. Wasn't I lucky!?!

Even when I wanted to push through my symptoms and go back to work, I couldn't, because being a nurse, I couldn't return to the wards until the glandular fever had run it's course. Still, I told myself, eventually it would be gone, and I could catch up at uni, and get on with my life. It could be worse.

And eventually, my blood test came back clear, and I immediately pushed myself back into my busy uni schedule again - this time working even harder, to catch up on all the work I'd missed. To be honest, it was an awful time. I'd force myself through my lectures, with a LOT of caffeine ... then in every break, small or long, I'd literally lie down in a corner of the common room, near my friends, and fall asleep! Looking back, it was just insane to have gone back to uni in that kind of state ... but I had no idea then that doing so could trigger a permanent condition. (I'd spent my whole life, pretty much, working hard despite numerous and consistent illnesses - this wasn't any different, right?) Well, despite the struggle, I DID manage to graduate, albeit several months after the rest of my class.

Fast forward through the next few years of working as a Neonatal nurse in a highly intense ICU environment; (at first full time, then dropping to part time as my health began to deterioate and I was unable to keep up the pace), getting diagnosed with post viral syndrome, then M.E., getting married - to a man I loved very much but who turned out to be abusive both emotionally and physically (but that's another story!); & finally leaving said man ... and I was living in a rented house with a good friend - feeling like I was finally free, and could live my life the way I wanted again ... when I was suddenly struck with a really serious kidney infection, which landed me in hospital for a week.

And that's when my life fell apart all over again.

The infection finally cleared up, but between that and the stress of leaving my husband, (within a judgemental church environment) my M.E. went into a major relapse. This was, I think, somewhere between 6-7 years ago, and I haven't been capable of working a day since. (Dates are fuzzy for me because my memory problems are so extreme!!)

Since that initial relapse, I've bounced between being housebound & bedbound, being cared for by the most amazing best friend you could ever hope for, and I've had to learn that there are some things in life that you can't just push through. (No matter how much your doctors and the benefits system might like you to, lol!!) At this time, I've been completely bedbound for a year, & my pain and fatigue are so far showing no signs of letting up, not to mention a massive & rather scary list of a zillion other symptoms - most of which go completely unchecked by a doctor, since I live in the inner city and our doctors surgerys have little money or resources, and home visits are almost an impossibility. (i've had a home visit a grand total of once in the entire time I've been housebound!) My condition waxes and wanes a lot, but in the last 6 years I don't remember a single day when it's been a simple task to just leave my bed and get to a bathroom, or make a cup of tea, or well - anything at all, really! Every piece of energy I use has to be paid back in increased symptoms at some point later - like my body is demanding taxes. And all this while the world goes on around me, my friends and family moving on with their lives, building families and careers ... and me feeling stuck in one place, with an illness that isn't understood, or even believed in by many medical practitioners, never mind by the public in general. I've had to find ways to hold onto hope during some very dark times. I suppose it's become kind of a mantra to always try to find, and hang onto, the good and beautiful and hopeful things in life.

And so, I'm writing to you from my bed, just thankful that I'm able to do so - for now, anyway! I hope that this blog will be a positive place to be, and that it will reach even just one person who thinks that M.E. isn't a 'real' illness, and change their mind about it.

Thanks for listening!

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)