Tuesday, 6 November 2012

Remembering Emily Collingridge

Emily Collingridge
1981 - 2012

Emily Collingridge's funeral will take place today, Tuesday, 6th November 2012 at 12.45pm. My thoughts and heart are with the family today, and I wanted to just remember Emily here, and the brave fight she fought, for so many years, with the monster that is M.E.!! Thank you Emily for all that you shared with us about your life, all that you taught me, and for all that you were as a person. You will be sorely missed by many, and are a huge loss for our community of people with ME, and 'Spoonies' in general. We will not forget!!

If you would like to learn more about Emily's life with Myalgic Encephalomyelitis, please visit http://www.severeme.info/about-emily.html

The following is a copy of the information given by Emily's parents for all Emily's friends & supporters, copied with permission. There are some things listed that you can do today to pay tribute to her life. Let's stand together as a community to remember and honour Emily!

Her parents, Jane and Jim, wish for it to be a private ceremony but say, “We know that people will be thinking about Emily and holding her in their hearts as they are so touchingly doing at the moment."

As many people will want to pay tribute to Emily, the following suggestions for a virtual funeral have been put forward by some of her friends and approved by her parents:

1) Light a candle at some point on the day of the funeral. For those too ill to tolerate candlelight, a picture of a candle could be looked at instead, or a candle simply imagined.

2) Read, or have read to you, some of the pieces below. In the first Emily's mother, Jane, shares her memories of Emily. Two quotes have also been chosen as reflecting Emily's spirit. All can be found below.

As Emily was a dedicated campaigner, we also suggest the following as a means of raising awareness of ME:

3) Change your Facebook profile photo (and cover photo if you are on Timeline) to the rose picture below. This can be done on the day of the funeral or before. A suggested caption for the photo is: 'In memory of Emily Collingridge' with the web link: www.severeme.info/about-emily.html (If you are unable to copy the rose picture from this document, it can also be found at: http://bit.ly/RPeahY To add a caption, go to your profile picture and click where it says 'Edit')

4) Share on your Facebook profile the Guardian article about Emily. This has been chosen because it gives a good overview of severe ME, and includes links to the moving piece "Emily's Appeal" that Emily wrote last year, as well as a link to the website of her book. http://www.guardian.co.uk/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome (If you cannot click through from this link, the quickest way to reach the article is to Google: Emily Collingridge Scott Harris. Scroll down to the end of the article and there is an option to share it.) Remember that people are more likely to read it if you include a short message explaining its importance to you.

5) Donate a copy of Emily's acclaimed book, Severe ME/CFS: A Guide to Living, to your local library, hospital, doctor's surgery, or anywhere else where it can help patients with severe ME and those involved in their care http://www.severeme.info

Jane and Jim request that no flowers be sent for the funeral. Donations in lieu of flowers, if desired, can be made to ME Research UK http://www.meresearch.org.uk either direct or through the funeral directors: Francis Chappell & Sons, 41 Sydenham Road, London, SE26 5EX

Jane shares her memories of Emily:


Emily was one of eleven babies born on a memorable and busy Good Friday at Dulwich Hospital in 1981.. She came out looking rather squashed and for the first 24 hours slept peacefully leading to her father commenting on what a good baby she was. That didn’t last. For the next few years it was a question of ships that passed in the night as she toddled in to Mummy and Daddy’s bedroom and Colly decamped to her bed!

I think Emily was born organised and quite early on could show her baby sitters how to do up her nappies. From the age of three she was certainly bossing me about and I couldn’t argue as she always seemed to show a great deal more common sense than me. Of course she continued to boss me particularly in the wrapping of Christmas presents, an art she perfected one year when I was called away on an emergency and she wrapped sixty gifts in three days.

Emily was sensitive and shy by nature, but this did not stop her enthusiasm for participating in life. Visits to the Sooty show and the pantomime found her up on stage belting out a song completely out of tune. Much to my incomprehension, unlike me, she did not enjoy dancing classes (though she later loved visits to the ballet) and like me she was no good at most sports apart from a love of cycling and swimming shared with her father. However, she was an ardent tennis fan; this dated back to the day she was trying to spot Mummy and Daddy on the television among the Wimbledon crowds and started asking Gan Gan, her beloved grandmother, all about the game. She also fancied Jonny Wilkinson well before he became famous, but claimed that this had nothing to do with her interest in rugby. She did not miss one England game the year we won the world cup when her screams of excitement sent our Westie, Bella, into a whirl of barking.

Though she was forced to leave school at fourteen because of ill health, Emily’s interest in learning and an enormous variety of subjects was in no way diminished. She educated herself. She was an avid reader and her head was always buzzing with ideas and the next project she wished to tackle. Her way with words was evident in her writing and when talking (which she could do at length and non-stop!). Charity PR had been her chosen career when she was at school and so the opportunity to do this for an ME charity (with tremendous success) when her ME was less severe, though often from bed, was perfect. She later did paid work for Home-Start. Campaigning was in her heart, not only for better awareness of ME, but many other causes. She was highly principled and would always stand up for the underdog. With the publication of her guide to living with severe ME her desire to help others was partially realised when it was greeted with enthusiasm and sold internationally.

Emily was lucky to have many wonderful friends which she largely made through her work and the ME world. She missed her dear schoolfriend, Lydia, whom she regarded as a sister, as Lydia is married to an American and lives in Kansas, but they remained very close and though she sadly never met them in person, she adored Lydia’s children.

I think Emily inherited traits in looks and temperament from both her father and me. But Emily was Emily – clever, feisty, passionate, fun, gutsy and very affectionate.. She tried to look after us as we tried to look after her. We loved her very much and she loved us very much and for that we are blessed.

- Jane Collingridge

Quotes that recall Emily's spirit:

"To laugh often and much; To win the respect of intelligent people and the affection of children; To earn the appreciation of honest critics and endure the betrayal of false friends; To appreciate beauty and to find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; To know that even one life has breathed easier because you have lived. This is to have succeeded."

- Ralph Waldo Emerson

"There is the courage that springs from battle fever, or from a desperate emergency. And there is a courage that is rooted in the acceptance of a dreadful circumstance and all that it entails -a courage that brings sanity and cheerfulness and hope to lives that could be utterly consumed by sorrow. This is the courage that endures. This is the greatest bravery."

- Pam Brown

This document can be downloaded and printed. Permission is given to repost it, but please do so sensitively and respectfully. Thank you.

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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, 24 July 2012

Fears and Potential

I'm a little freaked out by something that happened this week.

I've been needing to take naps during my usual waking hours (night-time) for the last few weeks, now. I'd almost go so far as to say that I feel like my balance is tipping back towards hypersomnia, after several years of generally more healthy sleeping patterns, with bouts of insomnia... Except that I've still had days recently when I've struggled with insomnia during the daytime, too.

Anyway, a couple of nights ago, I very suddenly really needed to go to sleep, and just couldn't keep my eyes open any more. (something which is not unusual right now) But as soon as I settled down, I began to have paralysis episodes, where I couldn't breathe or move for a little while, then would fall asleep, then jump wake again suddenly with the same issue. This happened several times in a cycle over about an hour, and i couldn't pull myself out of it... then just as suddenly, I was able to wake up properly again.

What is worrying me is not so much the episode itself, (though I can't deny it was frightening!) but the fact that I've experienced it before, just not for several years, since the worst period so far in my illness. (In fact I have quite a few symptoms cropping up which I haven't had since that time and I'm really concerned at what that might mean.) The period in question was when I was having both these 'sleep paralysis' episodes on a frequent basis, and also full or partial body paralysis sometimes lasting hours, often for days or more. At that time I required near to total care from my carer the majority of the time. I never want to go back to that level of severity and honestly, it's kind of frightening that I am beginning to re-experience some of those symptoms which I've been free from in over 4 years now!

photo by Meredith_Farmervia PhotoRee

It's particularly horrible given my current lack of medical support... although I guess the truth is that I didn't have much support the first time around either, plus, much less knowledge personally about my illness! I was at the time seeing an ME specialist who (although working in a clinic where the treatment options were only graded exercise and cognitive behavioural therapy) had enough knowledge of and belief in the physical symptoms of M.E. that he was able to to tell me that yes, these symptoms were found within the realms of severe ME. However no tests or assessments were arranged and I didn't have the self-confidence, knowledge, or energy to push for more. I was just grateful not to be told I was crazy - and at least I had someone who KNEW, you know???

I know that the only thing I can really do right now to try and stop things getting any worse, is to listen to my body's limits as much as possible, and rest when it tells me to - but that's just so incredibly frustrating!! I can't go back to where I was - I'm struggling to cope both physically and emotionally as it is, as is my carer. I just don't think I ... we, can go through that again. - especially now that I'm not living in my own home with just me and Anna anymore. I honestly can't imagine dealing with all that in a more public setting, even though it is family members.

I know I need to be as positive as possible, and hope for the best, but I also feel it would be foolish not to see the reality of my situation at the same time, to do what little I can both to prepare for it, AND to avoid it! Myalgic Encephalomyelitis is, after all, a waxing and waning illness. I haven't ever had a complete remission in the last 16 years, and I've been severe for 8 years, which statistically gives me a smaller chance of getting better and a greater chance of getting worse. Having no real medical care also goes against me as so many of my associated symptoms and illnesses are getting worse when it doesn't necessarily need to be the case.

So... The plan..?

Try not to let myself get too scared.
Don't bottle up my feelings because that only makes it harder not to be scared!
Rest, rest, rest!!
Try to resolve this GP situation and get myself some domicilliary care as soon as possible - if possible!
Rest, rest, rest!!!!!

If anyone has any better ideas, useful advice or info, or any thoughts in general, please let me know! :)

On the plus side, apparently my liaison at our GP surgery has been working on sorting out my situation there. She's meeting with the practice manager this week, then my carer is seeing my new dr on my behalf and then apparently I will be discussed in the next practice meeting. (kind of scary all this going on without any direct input from me, but it's got the potential to be the most positive thing that's happened in years in terms of my medical care, so I just have to let it roll and see how things pan out!

I wouldn't often ask this, but if you pray, please could you send some up for me? Not only for this situation to work out as well as it possibly can, and that I start getting some real and available medical care ... but for me, to not give up on hope and to have the strength to keep fighting this minute by minute fight. I really need this to work out because otherwise I really will be left with no medical care whatsoever, sigh! Thanks guys - you really are the best!!!!

This beautiful image, 'Birds of Hope' is by Cornelia Kopp via PhotoRee

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"Sometimes in the darkness, while wolves howl and we feel the cold touch of fear against our spine, a faraway light glimmers

Sometimes in the press and the chaos of the crowd, in the noise and the hurry, a soft voice whispers.

That light, that voice, is Hope.

Sometimes we feel as though trying to catch hold of it is like trying to dance with clouds or turn lead to gold, but its always there waiting to suddenly appear right in front of us. within our reach."

Divider Bar Image

Poem by Sarah-Louise Jordan, used with permission and much thanks!

Sarah has two blogs which I highly recommend you visit. The first, 'On a Long Road, Take Small Steps' is about her long journey with Severe Myalgic Encephalomyelitis. The Second, 'Life is Uncertain, Eat Dessert First' is her poetry blog - and I have to say, she is genuinely a talented poet & writer!!

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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! :)


Saturday, 16 June 2012

The Saga (and I) Continue Wearily On

Things have gone from bad to worse with my GP issues, as I told you in my last post... And I have to say that I'm sick to my back teeth of talking about it, and thinking about it... round and round my head in circles that never go anywhere and can't resolve anything - but I know I can't stop yet because that means fully giving up.

To recap, my GP, in a sudden, dramatic, and unexpected move, has left the surgery. The patients (including myself and a large majority of the other 'vulnerable patients' who attend this surgery) are lost, and the staff are confused and shocked. She did no official handover to another doctor, so none of the other GP's know our situations or histories past what they can see in our notes. The surgery almost always refuse to do home visits, and I can barely get to my bathroom, never mind to the surgery, so how am I meant to get to know and trust another doctor, and they me? It's a ridiculous situation and one that just shouldn't happen short of the unexpected death of your doctor!)

Anna is currently trying to arrange to meet with the doctor who seems the best replacement & the practice manager, to figure out a way forward, but it's not fair to her that she's having to do something so stressful at a time when her health and her (severe) PTSD are flaring up badly, and when she's also having to adjust to this new dr herself, whilst dealing with a long term as yet undiagnosed health issue. I'm almost more angry about that than anything else, given how much Anna was already struggling, and the tendency of Dr's in the uk to presume a psychological cause for physical illness where a psychological issue already exists, as if they don't realise that, for example,  someone who is depressed or is Bipolar, can also develop MS or Cancer!! (really, how closed minded do you have to be to think that way???) Of course, I'm also now open to that kind of re-interpretation of my illness, which is probably my worst fear in all this. We know nothing about what kind of person this new Dr is, or what he knows or believes about ME... And that's just terrifying! My previous dr may have been borderline or actually neglectful, but at least she didn't try to force me into unhealthy, psychological treatments! There was some level of safety in that.

Complicating issues even further, I need this doctor to communicate with my Gynae doctor about my current condition. The manager over at that clinic thinks that I should get the Hysteroscopy (Did I tell you I need one? I have Poly Cystic Ovarian Syndrome which has been really flaring up over the last two years, and they want to check that nothing else is going on) done under anaesthetic, because among other issues, it would probably be impossible and definitely be extremely painful and difficult, to hold my legs up in stirrups for the length of time the op takes. However the consultant won't agree to this course of action before he has seen me to assess my condition. Anna has talked to the manager and let her know that if they insist on my going in to see him again just for that, that means 3 visits back to the hospital essentially just for one operation, (I will have to see the anaesthesiologist too, you see) which would mean double the exhaustion and recovery for me. She totally understood and suggested that if I can get my GP to contact the consultant stating that he believes I will need the anaesthetic, then that might suffice. Of course, my GP has never even met me, so how can he do this?? Even worse, he is currently on a 3 week holiday, so everything is completely on hold! So frustrating!!! The one hope I have is that I've requested a copy of the medical report the DWP doctor filled in for my recent DLA reassessment. Considering that I got the highest level possible in that benefit, we're thinking the medical report must have been a really good one. I'm hoping beyond hope that it is, and that we can use it to prove my case somewhat to my new GP and even to the Gynaecologist, if necessary. Seems so funny to me to be pinning hope on such a thing, since similar reports about me have in the past been terribly negative and presumed me to be a malingering liar. There's irony for you!

I opened my Blogger app wanting to write something uplifting and hopeful, but I found that I just don't have it in me, you know? I feel really flat and tired, emotionally. I've had enough of all this fighting. Every day is a struggle just to eat, sleep, get to the bathroom, brush my teeth, ignore the pain, and not go completely crazy trying - and I have little left over to figure out a way through this huge setback. It's just too much. Some days, hope, happiness & health feel so far away that it's like they exist in one reality and I in another. Things really shouldn't be this way. We shouldn't be alone in this! Doctors's should be a safe haven who care for and support us - not something to be feared. I can only hope and pray for all of us that one day, that will be our reality - preferably before this illness affects yet another generation!!


Oh hey, not to end on such a tragic note, here's a piece of sage wisdom and a reason to hope, imbued in me by reading Blackout by Mira Grant, & Alison Hewitt is Trapped by Madeleine Roux over the last week. Things could always be worse. We could be surrounded by a zombie hoard, just waiting for the chance to eat us! ;) There ya go. My work here is done! Way to rally, Susannah! ;)

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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, 15 May 2012

The Universe Just Keeps on Giving! :P

Unfortunately, those gifts just aren't always good!!! Sigh.

We just found out today that my GP has suddenly up and left the surgery, with no warning whatsoever to patients (and according to my liaison at the surgery, it was a complete shock to the staff there, too!) and no obvious dr to switch to within the practice, for those patients who only ever saw the Dr who has left, because she was easily the best Dr in the practice and one of the better Dr's in the area.

I have had my problems with this Dr, but most of them were as a result of the area we live in and the restraints of the practice she worked for, rather than her being a really bad doctor ... But despite all that, I'm feeling a bit panicked about this situation!! She was the only Dr there who knows anything really about my condition, and about our situation here at home. (and how would a new GP get to know me when they refuse to do home visits 99% of the time, and I cannot get to the surgery???) She was also treating Anna who has been very ill for a couple of years, again with quite a complex condition. (Anna has Post Traumatic Stress Disorder, too, and really relied on our doctor to be sensitive to that. She's been crying on and off all day, she's so upset about this - which makes me so mad, I can't even tell you!!!) I know, too, that the Dr treated quite a few other very vulnerable patients, so she has left us all very much in the lurch. I feel really quite angry that she gave us no warning at all, and that she apparently hasn't formally handed us over to any other doctor. To me, that is really, really unprofessional!! She was the only Dr I had even a small amount of trust in at the surgery ... And I honestly have no idea what Anna and I are going to do now!! I was invisible enough already at my practice and now, presumably, there will be no-one looking out for me at all! I've rarely even met any of the other doctors!! I just feel so numb about it all. Neither I nor Anna have the emotional or physical energy to deal with this - there's enough to cope with already!

There isn't really any good surgeries in this run down inner city area, so it's not even like things would necessarily get any better if we picked up and moved to one of the other practices - and it's kind of like playing Russian Roulette because you really have no idea what the doctors are actually like until you switch to their practice. (It's not like in America where you can really pick and choose your doctors, and go to meet them before you transfer to their surgery, etc.) It's not such a problem in the wealthier areas of the country, but it can be a serious issue in the poorer areas because the NHS doesn't dole out the money fairly across the country, and because many of the good GP's refuse to work in the run down areas of the country.

I really feel like I just faded a little bit more ... like I was hidden in deeper shadow from the outside world, and I have no idea how to become visible again. :(

'A Fading Girl' by Sarah Allegra, used with permission of the artist. Click here to visit her Gallery!
'A Fading Girl' by Sarah Allegra, Used With Permission.

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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, 11 May 2012

Abseiling for M.E.

The following is a guest post written by Rory Singer, and a plug for the abseil he is (bravely!!) doing for ME charity 'The Association of Young People with ME', for ME Awareness Week. Please help out with this cause if you can, and share this post on your social networking sites! :)

Rory on the Beach
Hello, my name is Rory Singer and I am 15 years old, I have had M.E for 6 years. I am assuming you already know what M.E is if you are reading this blog but if you don’t know, M.E is a painful, disabling and isolating illness which affects an estimated 25,000 children and young people across the UK. Symptoms include extreme pain and fatigue in the muscles to the point of collapse, weakened immune systems and severe cognitive problems. (You can read more about it through the links in the 'ME Support & Info section of the right hand column)

Susannah, here at The Thing With Feathers, has ever so kindly let me have a space on her blog as part of M.E awareness week and that’s what I would like to talk to you about. Although it is improving, there is a great need for increased awareness of M.E and what it does, and I think awareness week is a great time for everyone to get involved and do as much as possible to create awareness for a misunderstood illness.

I Support AYME!
I have decided to do a charity abseil. With the support of my sister and a group of my friends, we are all abseiling down the Avon Gorge in Bristol to raise funds for the registered national children’s charity, AYME (The Association of Young People with M.E) (No.1082059) and to spread general awareness of M.E. AYME is dedicated to the emotional and practical support of children and young people with M.E and their families. Membership is free so AYME relies on fundraising events such as ours to keep its vital services running. If you would consider supporting us in our challenge for AYME, we would appreciate anything you are willing to give! Details on how to donate will be at the bottom. :)

Avon Gorge, where Rory and his sister will be abseiling for charity!

Now back to what I was actually talking about, M.E awareness week.

So what, I hear you ask, can I do to help?? Well there are plenty of things you can do, as I am about to show you in the bullet pointed section below. I'm sure you can come up with many more ideas, too!!

  • Shop online!!
    By shopping through this link 3-15% of the cost of your order will be donated automatically to Ayme!

  • Ebay
    Got any old or unwanted items? Sell them on Ebay and donate some of the money to an M.E. charity.

  • The Classic
    Shave your head, legs, eyebrows or (come on boys!) your chest for charity. This is an easy thing to do and its lots of fun and will get lots of people donating!!

So please visit our website at : Just Giving, where you will be able to safely sponsor my abseil! You can donate securely by credit card, Paypal, or even by text (!) - and gift aid is supported. The money goes directly to AYME, through Just Giving.

If you can share the links to this post and to my Just Giving site on Twitter, Facebook, & any other social networking sites you use, that would be amazing! And if you have any questions or just want to say hi, you can find me at @Rorysinger_ayme on Twitter, or http://www.facebook.com/rory.singer on Facebook.

Thanks for reading and again, a massive thanks to Susannah.
Hope to hear from you soon,
Rory Singer

Click this image to expand it to it's full size, to see some of the things people with ME go through.

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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! :)


Saturday, 5 May 2012

Even Caged Birds Sing!

I've been thinking more this week about the nature of grief, and about just how much those of us with severe chronic illnesses, especially those who are housebound & bedbound, actually lose. How much I have lost. How our dreams are smashed, our health, friends, careers are gone, our lives are torn apart & the path of our lives has been irrevocably diverted against our will. I believe that each of us, (and our close family & friends) having lost so much, goes through a process of grieving - one which may in some cases take years, or even be a constant presence in our lives - because each month, each year, more things may be taken from us, starting that process all over again. This grieving process can be made that much harder by the fact that so few people outside of the situation can really understand what we're going through, so a positive support network can be difficult to find.

This grief & loss is so extreme - it affects every single corner of our lives, and our hearts. There are so many things that we each, desperately, miss - and miss out on. It goes so much further than the obvious losses like our health, financial security & careers. We lose friends & family - and our relationships change drastically with the few we do not lose. We are locked away inside our houses, missing out on the fun activities, outings and holidays that our loved ones are able to go on. Some of us may not even be able to see the sun or feel the rain for years on end! We may begin to come up against ignorance & prejudice. Our love & sexual lives change, or sometimes are completely gone! For those who become ill at a young age, childhoods and educations are lost. Conversation becomes difficult or even impossible, meaning we may lose closeness with the people we love. Years disappear for us in almost a vacuum, whilst the lives of our loved ones carry on. Honestly, the list is endless - our bodies really do create a prison within which we are trapped!!

But You are Not Permitted to Leave - by Meredith Farmer - Click here to View her Flikr Photostream

For many of us, especially those with neurological diseases, the things we've lost are now just distant, unfocused memories. Often hazy and difficult to remember or recall. To me, they seem like worlds away from my bed, in my bedroom, where I've been caged for so many years. To me, it literally feels like my past was lived by a completely different person!

The thing is, I believe that, that very grief - that endless depth of pain & suffering, and the daily battle we have to fight to survive it, gives us something very special in return: A deeper understanding of & connection to hope.

Maya Angelou's poem, I Know Why The Caged Bird Sings comes to mind. (You can read this poem in full, below) Reading it again, when I began writing this post, I resonated with the bird in her poem so strongly that it brought tears to my eyes and a slow, painful gasp to my chest! The poem is an analogy for the desperately painful, chillingly lonely, yet also forever hopeful plight of black people at the time of the author's childhood. It is about dreams squashed, and dreams as yet unrealised.

Little Bird by Rubyblossom - View her Flickr Stream here
'Little Bird' by Rubyblossom via PhotoRee

This poem is heart-rendingly sad ... but I don't believe it's about pain, or injustice quite so much as it is about hope - & the strength that we have hidden within us, enabling us to survive whatever comes our way! The hope of gaining freedom from binding circumstances. The hope that dreams will come true. This is the kind of hope and the depth of strength & courage that would move heaven and earth to gain what it most desired!

In the depth of winter, I finally learned that
within me there lay an invincible summer.
~ Albert Camus ~

This poem, too, corresponds so strongly to the Emily Dickinson poem for which I named my blog, a poem which has meant a great deal to me. 'Hope is The Thing With Feathers' very much conjures up a beautiful, soaring, never-ending hope, whilst 'I Know Why the Caged Bird Sings', evokes a much more frustrated, desperate hope - but is all the more powerful for it! The hope of freedom surely is one of the most powerful of all hopes!!? It certainly is for me!!

I feel, very deeply inside my soul, a desperate voice dreaming of and hoping for freedom. That voice has never let me down, no matter how hard my struggles or how sick I've become - I still have the hope that things will get better. That one day, I'll ramble easily through a forest, or a meadow full of wildflowers, the sun shining on my face and my dogs at my feet. That I'll walk along the beach, the waves gently lapping at my feet, the wind blowing through my hair. Be able to venture outside in the snow, catching the snowflakes & watching them melt. I dream of falling in love & building a family. I want to adopt some older kids who are struggling in the foster system, or perhaps do emergency fostering. I even dream of having a baby, though age & infertility make it all but impossible now. (I think pregnancy is one of the most beautiful, interesting, amazing & challenging processes we can ever go through in life & I want to know how that feels!) I wish I could play in the sandpit with my nephew who I've barely seen more than a few hours in his two years of life, & easily hold his baby brother in my arms. I hope for days spent with family & friends with no restraints on my energy and no pain holding me back.

As it stands, statistically, I have little chance of a full recovery unless a breakthrough is made in the research of Myalgic Encephalomyelitis - but despite that, & like the singing caged bird, I do have the hope that somehow my life will change and that I will find freedom from the grips of this terrible illness. I accept the possibility of being severely ill for the rest of my life, but I hope for better - and no matter how hard the fight gets, I don't intend to give up on that. The point isn't in whether I ever reach my goals, or whether I recover from M.E. The point is that I need the hope that I will get there. It gives me the courage to continue, and helps me to find some level of contentedness & happiness in my present. I have goals & dreams, and no matter how scared I am that those things won't come to pass, I don't want to let go of them, & I'll fight for them! Simply put, I believe that there is no point to life without hope.

We Must be Free by Nanda Correa - Click here to go to her website, kammiatelier.com
'We Must be Free' - By Nanda Correa
(Posted with Permission & Much Thanks!)

I know why the caged bird sings
A free bird leaps on the back of the wind
and floats downstream till the current ends
and dips his wing in the orange sun's rays and dares to claim the sky.

But a bird that stalks down his narrow cage
can seldom see through his bars of rage
his wings are clipped and his feet are tied so he opens his throat to sing.

The caged bird sings with a fearful trill
of things unknown but longed for still
and his tune is heard on the distant hill
for the caged bird sings of freedom.

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied so he opens his throat to sing.

The caged bird sings with a fearful trill
of things unknown but longed for still
and his tune is heard on the distant hill
for the caged bird sings of freedom.

~ Maya Angelou ~

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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, 7 February 2012

Choosing Happiness!

Ok so I couldn't for the life of me sleep today, my body was protesting too much... So I started counting up in my mind all the beautiful things in life that bring with them happiness, and it sort of turned into this.....

Frosted white windows and snowballs in winter
Freckles on noses all scrunched up in giggles
Wellington boots crunching crisp leaves of gold
These are a few of my favourite things

'Happy Hair' - Image of a joyful, smiling freckled girl by D. Sharon Pruitt at Pink Sherbet Photography - View her Flickr stream here!

Dewdrops in meadows, magnificent forests
Friends who are soul mates, and carpets of bluebells
Brown paper packages tied up with string
These are a few of my favourite things.

Soft scents of jasmine and lilacs and roses
Great sprawling oak trees & tiny pink daisies
Freshly mown grass and the babbling of brooks
These are a few of my favourite things

Jasmine, by Matsuyuki - View their Flickr Page

Black and white photos and gorgeous high heels
Mountains and rivers and bees gently busy
Rainbows on waterfalls, shell covered beach
These are a few of my favourite things

Rainbow over a Waterfall by Christopher Robbins - View his Flickr Page here!

Ice cream with pretzels, and faithful white westies
Snowflakes that stay on my nose and eyelashes
Silver white winters that melt into springs
These are a few of my favourite things

Catching Snowflakes by Ben M - View their Flickr Photostream

When the pain bites
Prejudice strikes
When I'm lonely or sad
I simply remember my favourite things,
And then I don't feel so bad!

We each have the power to choose how to view our lives, what to place the most importance on, whether we want to be happy or not.

It's more of a fight for some of us than others, perhaps, to choose happiness for our lives - but no matter how hard, it has more importance than almost anything we could do for ourselves and for those around us. I wonder how much better life could be for each of us if we chose to focus on the good (however small those things may be, especially for those of us living within four walls!) rather than the bad. How much better this world could be if more people could only learn to live that way.

Happiness doesn't always just happen. Sometimes we have to actively choose it, fight for it ... choose to see the beauty around us, and keep choosing it every single day, no matter how hard it sometimes gets!

"Dwell in Possibility..."
Emily Dickinson

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Thursday, 12 January 2012

The Cupboard is Bare....? (Welfare Reform)

I wanted to bring your attention to a post recently made by Matthew on his blog, Indigo Jo Blogs, regarding the reforms to Disability Living Allowance which are about to be pushed through by the government. His feelings on the subject very much mirror my own.

The government state that there is 'no alternative' to making cuts to DLA ... yet when you look below the surface of their proposed reform, the problems are immediately evident - both (more obviously) to the quality of life for people affected by this reform, and (less obviously) for the future financial security of the country. Cutting benefits for disabled and chronically sick people will inevitably cause costs elsewhere to shoot up, potentially costing the country more than the cuts will 'save'. This is ignoring the fact that the disability benefits are the least affected by fraud, (According to the DWP's own statistics, only 0.5% of DLA claims are in fact fraudulent!!!!) and therefore are the least needing of reform in the first place!!!

Matthew says it all so much better than me in my current massively fogged state, so I'd refer you to his post ... excerpt below.

Excerpt from The Mail, Gerada, & The Alternative to DLA

My main reason for writing this, though, is to explain why disability benefits are not something we can just do away with by saying “the cupboard is bare” or “we can’t afford it” ... next time you hear a Tory (or Lib Dem) politician tell you “there is no alternative”, remember that there in fact is — wholesale re-institutionalisation. Only, the buildings have been either demolished or sold off, and building new ones will cost an awful lot of money. Caring for people with disabilities or the chronically ill in nursing homes or long-stay hospitals costs more than supporting them to live at home, and is less satisfactory for them as it imposes an institutional lifestyle, even if it does not lead to outright abuse (which it sometimes does). There is, in fact, no way to reduce the disability budget without imposing a lot of extra bureaucracy, a huge institutional care burden, or a lot of suffering (and manifestations such as public beggary) which would prove politically intolerable.

You may also want to follow the #SpartacusReport hashtag feed on Twitter, regarding the report just released by a group of disabled people, based on freedom of information requests, showing that the governments claims that the disabled community was supportive of their welfare reforms, was actually a misrepresentation of the truth. You can read an easy read copy of the Spartacus Report, officially known as the Responsible Reform Report: here.

I'm so thankful to, and proud of, the people who produced this report, and who have done such an amazing job of getting it into the public eye! Two of the main helpers have actually been hospitalised by the effort this has cost them, and several are now extremely ill. It was a marathon and amazing effort by a group of very sick and disabled people, who are amazing activists for our cause!!! I've embedded a video below, posted on Diary of a Benefit Scrounger, asking for our support in keeping the Spartacus report in the public eye, because so many of the team who put this report together have become too ill to continue working on it at this time.

Today I heard that the Lords voted, yesterday, to overturn the one-year time limit to contributory Employment and Support Allowance proposed by the government - this is a major victory for all disabled people in the UK!! Please check out today's post on Diary of a Benefit Scrounger for the latest updates to the Spartacus Report Cause, and info on what you can do to help. :)

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Sunday, 1 January 2012

An Old Year Gone, a New Year Begun!


I just wanted to take a brief moment to send some new year thoughts the way of you all, my readers & friends.

This has been a difficult and challenging year for me in so many ways, to say the least, but there has been an astonishing saving grace - my blossoming friendships with all of you!! I couldn't begin to know just how hard this year would've been had the ME & chronic illness community not opened it's arms, welcomed me in, and supported me through each of the many, many bumps in the road. (not to mention allowing me the privilege of doing the same for many of you!!) I honestly feel that all I've learned in the last 15yrs, of living from day to day, relying always on hope to strengthen me, might have fallen away if I hadn't had this grounding, and rooting, in our community.

I feel like I've found a new family, & it was the perfect timing, the perfect solution. It's been a long time since I felt so understood and accepted ... and whilst it's kind of a sad sign of our time, that so few of us find that support in our homes, families, work and social groups, I think it's incredible and rather wondrous that people in so much need themselves regularly take the time to encourage, support and love others in need!!!

If there's one resolution most of us probably need to make this year, it's to see the good, the selflessness, the strength and the courage in ourselves and be proud of it! We may be sick & disabled, we may lead very limited lives, society as a whole may think we have little to offer - but darn it, they're wrong!!!! We have so much to give. We are of priceless value, each of us completely and totally unique! So take a moment to look in the mirror, and see the real you - not the you society chooses to see - and be proud of, and yes, even love yourself!!!

"Be Yourself. Everyone Else is Taken!"
~ Oscar Wilde ~

Love who you are! Image copyrighted to Anahata Katkin - click here to view her site!

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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! :)