Thursday, 28 August 2014

The Best Princess

The poem below is for my friend Allan, who passed away suddenly last week. Over the past few days I have veered between disbelief and devastation at the news and for once I have struggled to put my thoughts into words. It feels strange writing about him like this because I never met Allan in real life and only became virtual friends several months ago through our fundraising efforts with Team Princess. He was a much cherished member of the online ME community and Allan's kindness and compassion reached out to all of us. His humour and gentleness, packaged in 140 characters, hurtled across cyberspace to raise a smile on even our darkest days. He was the first to offer 'gentle hugs' on payback days and celebrated every small milestone of recovery with such joy and hope. It's no exaggeration to say that Twitter is not the same without him.

Even though I only knew Allan for a relatively short time, I feel his loss as keenly as that of a close friend and I know some of my fellow princesses and spoonie friends feel similarly. Of course, it can't come anywhere close to how his family and friends must be feeling, but I think it shows how special a soul Allan was, to have become so dear to so many of his virtual friends. I may not have known Allan long, I may not have known him well, but I feel honoured and thankful to have known him at all. 

My thoughts are with Allan's family during this difficult time. May he rest well and rest in peace. 

A justgiving page has been set up in Allan's memory to raise money for Invest in ME. If you would like to donate, you can do so here - https://www.justgiving.com/inmemoryofAllanDickinson


The Best Princess

My friend died the other day.
My friend died 
And I'm bereft.
I am left 
Not knowing what to say.

Where do you start?
How do you start
To mend your heart
When there's a hole
Where he should be?
I can't believe that this is real.
One day you're chatting to your friend
Then the next, a life just ends,
Stops short, gone far too soon
So suddenly out of the blue.

Now who will send us gentle hugs
And photos of amazing mugs?
No more tweets of bible verses
Or tales of plays as he rehearses.
He was the first to wish us well
On days that felt like living hell 
And the first to cheer us on.
I can't believe that he is gone.

I miss my friend - miss him heaps.
Goodnight Princess, now you can sleep
Free from the payback and the pain,
Now you will never suffer again.
Rest well amongst the stars,
You're with your God now, safe from harm.

Friday, 22 August 2014

The me behind ME

Things aren't how they used to be,
But there's no need to pity me.
I'm still the same me underneath
Despite my disability.
Though you may not like what you see
And act like you're afraid of me,
This is my new normality
So please don't make sad eyes at me.

I don't view myself tragically.
I can't change myself magically.
If you're not part of my illness 
Then don't expect me
To make you a part 
Of my recovery.
If I have to be well to be friends
Then no deal, here's where it ends.


© Charlotte Green

Monday, 18 August 2014

The new normal


It's an interesting one, this. I have been pondering the way people view me now I'm chronically ill and classed as disabled. There are many misconceptions about us spoonie types and even those closest to us struggle to see the person behind the illness. Of my healthy friends and family, I have noticed three types of stock reaction to me and my situation. Some simply haven't been able to cope at all. It is incomprehensible to them that I can be so ill and yet receive no support. It scares them, understandably so because it IS scary, and the only way they can deal with me is through denial. The shutters come down, the backs get turned and I am placed out of sight and out of mind. By ignoring me and my M.E. the problem goes away and they can continue on with their lives, free from guilt and the helplessness that comes from watching someone suffer and knowing there is nothing you can do for them. I don't begrudge these people. It's sad for me but I don't take it personally. I realise to my shame that it's likely the healthy me would have reacted the same. I like to think I know better now.

Conversely, there are those that have tried their best to understand what I am going through. They may have struggled at first but their sheer determination to be there for me when I need them most has enabled them to come to terms with what M.E. has done to me. Much as I have accepted my new life, they have too, adapting with me to cater for my new needs and limitations yet at the same time treating me as the same person I was before I got ill. They are able to sit and chat, laugh, and have fun with me, seeing beyond the physical changes to the person underneath. I haven't had a radical personality swap. I like the same things, loathe the same things, still make silly jokes, and actually I find I laugh more these days. Well, you've got to really haven't you? I am eternally grateful to the small, loyal few who have stood by me. I know it has been just as hard for them, even if for obviously different reasons.

The third and final archetype is the most tricky to deal with. They mean well and yet unwittingly cause me much rolling of eyes and harumphing. They just don't seem to know what to do with me. It's as if they wish they could stick their fingers in their ears and pretend none of this is happening but for whatever reason (loyalty, guilt, sense of duty etc) they are unable to abandon me entirely. These are the people who make promises to visit but rarely keep to them, as if the promise itself is enough to assuage their feelings of responsibility. They are unable to get past the fact that I am ill and no longer see me as I truly am. They regard me with a mixture of shock, pity and fear, rather like they expect me to suddenly crumble in front of them and start wailing about how bad my life is. Poor Charlotte, I hear them think to themselves, how awful! Imagine living like that. She's so brave to keep smiling even though her life is so terrible. Their talk is always focused on what will happen when I am 'normal', this magical nirvana known as 'fully recovered'. They have the most wonderful ideas of what we can do together. It's touching, except that all of these ideas require some degree of wellness that I have not yet reached and may never achieve. Imagine when you're well enough to do this, they say, It'll be like old times! 

They don't seem to realise that all these wonderful possibilities are so far ahead of me it's downright discouraging. I don't want to wait until I'm well to have a good time - I want it now, I absolutely NEED it now! It is entirely possible to feel like crap every day and still lead a fulfilling and joyful existence. I should know because it is something I have been working towards for a long time now. 

I don't want to spend my time wishing I was 'normal', pining for what was or what could have been. I have been ill so long I can't remember what it's like, to be able to do whatever you want at a moment's notice, to not be in pain, to be able to walk further than a few paces, to be completely independent. I don't need pity or sympathy about this because it's a fact of my life that I can't change. It is no longer my normality. Having M.E. is now my 'normal' and I intend to make the best of it for as long as it may last. I choose to accept, to adapt, to bloody well enjoy! And by that I don't mean I enjoy being ill because having M.E. is horrible and devastating. I would do anything to get well and am doing what I can to improve my health to the best of my abilities. What I do mean is that by changing my expectations, by thinking about the world in a different light, it is possible to be happy. And I truly am happy, a lot happier than I was before I got ill if I'm really honest. 

I have learnt so much about myself in the last three years. I have found support and friendship in the most unlikely of places. I know beyond doubt how much the people who love me really DO love me. I understand the true meaning and value of life now in a way I never would had my life not changed beyond all recognition. I am excited for the future - it seems full of endless possibilities and adventures rather than the endless years of teaching I had ahead of me until I reached retirement age.

So please don't pity me. I don't need it. Save it for yourselves or best of all, do away with it entirely. I'm not the one who has to get up early and go to work every day. I don't have the school run to organise, or endless after-school clubs. It doesn't matter what I look like, what I choose to wear. I don't desire the latest fashions, I'm not bothered by which films are a 'must-see' or who the cool bands are these days. Popular culture largely passes me by and it's a freeing feeling. These days my responsibilities boil down to feeding my body, trying not to push myself further than I can physically cope with, and doing my best to remain positive and optimistic. Nothing more, nothing less, and actually it is a very nice way to be, to have no stresses or strains for the day-to-day nonsense that ultimately doesn't matter.

I spend my days resting and topping up my vitamin D levels. I fart about on the internet with my virtual friends, who I love as dearly as anyone I have actually met in real life. We make each other laugh and we help each other through the pain and suffering this illness causes. Without the friends inside my phone life would be far less colourful and I am grateful to have got to know such inspiring and downright awesome people. Most of all, I am grateful to have got to know myself again. I had lost my way in the effort to be 'normal'. The step back from life that I have been forced to take has helped me realise who I really am and what I want to be. For the first time in my life I have been able to share my writing and poetry with others. For the first time in my life I have the confidence to believe I can shape my future how I want. I am no longer afraid of failure, no longer afraid of success. I am ready to take on the world again but this time on my terms. If I could get my health back too that would be lovely, but if not I shall make the most of what I've got. I refuse to wait until I am 'normal' because for the first time in a long, long while I have remembered that being 'normal' was never the plan. I want to be extraordinary because 'normal' is what happens when you're all out of ideas. I've been there before and it made me ill. Why on earth would I want to go back there?

Friday, 8 August 2014

Black dress selfie

                  

So here is my black dress selfie for Severe ME Day. I'm not going to write much for this post as I have just done one for Stop the ME Cover Up that pretty much explains why raising awareness is so important. I have a visitor coming today, a friend I haven't seen for some months now and so I need to save my energy for that. This is the reality of severe ME. I had to have a bath and wash my hair yesterday so I would be in a presentable state today. There's no way I'd have the energy to do that as well as have a visitor on the same day. It all has to be planned to make sure I don't overstretch myself and end up bedbound and in agony for days after. My friend is coming at 3 so I will spend most of today resting so I have the energy for the time she is here. If I'm lucky I will manage an hour. It'll probably be less because I find one to one conversations extremely taxing. It's much easier to just sit in the corner and let everything happen around you whilst you drift off in your ME fog. I count myself extremely lucky that I am now able to have visitors, and that through careful management of my illness I rarely have to cancel or postpone as I have had to so many times before. It would be nice if more research was done to find treatment or a cure so that I and the many thousands of sufferers out there could get well sooner. 

           

Stop the ME cover up.



                                

August 8th is Severe ME Day, and as a sufferer of severe ME, it is another opportunity for me to raise awareness of this debilitating and life-changing disease.  Not enough is being done to help understand and combat this illness. There is precious little funding or research, no cure or treatment, and many thousands are left to deal with what is essentially a living death with little to no help or advice from the medical profession. Many are given bad advice which ultimately does even more damage. This is my own experience - by pushing myself and trying to carry on as normal for the first year and a half of my illness, I have now been left housebound. It has taken the same amount of time to claw my way back to some semblance of a life. I am just starting to be able to cope with visitors and am slowly making my way through the list of people I have been too ill to see for well over a year. This includes my brother, my small nephews (who aren't quite as small as when I last saw them) as well as close friends and their young children. 

The last few years have been tough for me and my family but we have learned to cope and enjoy the positives in life. I count myself as lucky because I have not had to deal with the disbelief and abuse many other sufferers experience. I am in the minority. There is so much bad press surrounding ME that many refuse to believe it is a real illness. Many are accused of 'faking it' or just being depressed. There are countless stories of seriously ill people being told they 'just need to get out more, get some fresh air' or that old chestnut of 'pushing through' the pain and fatigue. Let me tell you categorically that 'pushing through' is the very worst you can do. 

People with ME need rest, time, love, support and understanding. They need doctors who take them seriously. They need family members who don't constantly accuse them of lying. They need research into this terrible illness and they need a cure. The physical symptoms alone I wouldn't wish on my worst enemy. When you factor in the isolation and stigma felt by sufferers as well, then the plight of people with ME is elevated to one of the most shocking and unbelievable cases of mass neglect and denial.

I want to get well. I want my life back. I want my family to not have to worry about me. I want my husband to not be burdened by constantly having to care for me. Most of all, I just want the world to understand the truth about Severe ME and STOP the ME cover up.


Thursday, 7 August 2014

Armchair Atrocities

My reaction to the unbelievable photos showing people supposedly watching the onslaught on Gaza from sofas at the border between Gaza and Israel. This is not a criticism based on race or religion, it is a criticism of the actions of a small minority of people and my views would be the same if the situation was reversed or in the context of another war. Regardless of our heritage and upbringing, each of us has a duty to act with love and compassion towards our fellow humans. Anyone who revels in the death and destruction of others is morally wrong, and to say so is not a criticism of their religion, it is a comment on them as an individual human being.

It is unfortunate that I have to explain myself in this way. I am saddened and angered that my intentions could be misconstrued. Not agreeing with the actions of others does not mean you are against their religion. If it did then I guess it would also make me anti-catholic because I abhor the actions of priests who abuse children. Similarly, that attitude would make me anti-Christian because I strongly condemn the behaviour of members of the KKK. A person's beliefs should not excuse their choices and actions towards other humans. There is good and evil in every corner of society and I resent being accused of anti-semitism simply because in this instance, the subjects of my criticism are likely to be Jewish. Religion is not the issue here - taking enjoyment from others' misfortune is wrong whatever your beliefs.



Armchair Atrocities

Bring your sofa to the slaughter.
Bring refreshments - food and water.
Bring your family and your friends
Especially your sons and daughters.

Teach your children how to hate.
Teach them killing isn't wrong.
Let them watch the mass destruction
As you cheer on every bomb.

Celebrate the constant shelling.
Dance and sing at every death.
Enjoy the explosive entertainment
Until there's no Gaza left.

Make yourself feel all superior.
Fill the internet with boasts.
Show the world you are the greatest
Because your country's killed the most.

May your sofas slowly swallow
Each and every grinning ghoul.
I don't want to hear your crowing.
I know killing isn't cool.

I hope your popcorn chokes you.
I hope every shell backfires.
You have lost all sense and reason.
Your humanity has expired.

Take your sofas - let them burn.
Take your children - let them learn
This is not how it should be -
Genocide is not T.V.


© Charlotte Green  

Tuesday, 5 August 2014

Gaza

I don't pretend to know the ins and outs of the situation in Gaza. I am not pro-Hamas, or anti-Israel and have no answers on how the conflict should be resolved. All I know is that killing is wrong. Murdering innocent people is wrong. Bombing hospitals and schools can never be justified, nor can targeting children. 

The way some Israelis have purportedly been reacting to the bombardment and killing has been utterly chilling. Revelling in the death and destruction, bragging about the killing of innocents, writing nasty messages on the shells destined for Gaza, setting up sofas on the border to watch the shelling like some medieval form of entertainment. This is not humanity - it is barbarism. There can be no justification for this type of behaviour, nor can there be for the way Western leaders have sat back to allow the systematic destruction of an entire population.

Whoever is right, whoever is wrong, this is not the answer. It is 100 years since the start of WWI and it seems the human race has learnt nothing.


Gaza

One Palestinian dies.
No-one cries
It's no surprise.
Two Palestinians die.
We wonder why
But still don't cry.
Then three, then four,
Then hundreds more.
How many have to die before
This cruel and unrelenting war
Is over, done and in the past?
For once please let the ceasefire last.
I pray for Gaza, pray for peace.
Please God, just let the killing cease.


© Charlotte Green