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.

Susannah's Signature
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.

Susannah's Signature
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 ~

Susannah's Signature
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! :)