Thursday, 18 December 2014

The Goats of Christmas Present

When it comes to Christmas shopping, there's nothing worse than asking friends and family what they want and getting the reply 'oh, nothing. Don't worry about me!' It's the sort of thing people say without really considering the impact because they think it will make life easier for you. In reality, it actually means more effort as you struggle to think of a suitable gift. After all, how would they feel if you really DIDN'T bother? I'll admit there's been plenty of times I've been tempted to find out.

When I was healthy, I would spend my time traipsing miserably through the meleé, aimlessly wandering into shops in the hope of finding the perfect gift. For obvious reason, that is no longer an option. The Internet isn't much more helpful - hours spent trawling website to see the same selection of 'humourous' overpriced tat is wearing on even the brightest of brains. Again, for obvious reasons, my poorly brain can't handle the strain of online browsing for very long. 

So to all those who think they are doing me a favour by saying 'don't get me anything', I would like to declare the following:

I know you THINK you are being thoughtful and nice, saving me the effort of shopping for you, but you are wrong. There's no way on earth that I would not get you anything at all. As someone I deem worthy of a gift, I actively WANT to get you something, no matter how small. And because I care about you, I would actually like to get you something you actually want! Funds are limited, my time and energy are severely limited. How nice it would be for you to just tell me exactly what to get you!

All this pretence of not wanting any bother really gets my goat. So much so that, thanks to a brilliant (if flippant) suggestion on Twitter, I have come up with the perfect solution.........

I asked my followers for ideas and jokingly, one of them replied 'a goat!' So that's what I've done. Not a REAL goat, obviously! I'm not completely crackers..... yet. I simply went to the Oxfam Unwrapped website and ordered some goats to be sent out to families in other countries where a goat really does make a difference to their daily lives. You get to choose a card design and enter in a personalised message so that there is still something to open on Christmas morning, as well as the warm fuzzy glow of knowing you are doing something lovely to help people you have never met have a better life (and a goat.) For last-minute shoppers, you can even send your chosen item as an e-card. The best news is that at the time of writing this, goats are half price! That means you can buy twice the amount of goats for that special someone!

The perfect gift for those stubborn goats who refuse to tell you what they want.

Personally, I think this is a great solution to my problem. I'm not so sure the recipients will be so enthused but then it's better than nothing, right? I'm hoping that after a few Christmases of this, they might get the message and actually tell me what to buy them. Until then, they'll keep on getting my goat!


You can buy your own goat, as well as many other great gifts to help those less fortunate, at Oxfam Unwrapped. Other charities may offer similar services.

 

Monday, 8 December 2014

Enfantillages (these childish things)

I may be pushing 40 but since I have become chronically ill I have found myself regressing into childhood somewhat. An example of this is the reappearance of cuddly toys.

I've always kept a couple of choice favourites from my childhood. They have spent many years growing dusty on a shelf however spending many a bleak night in pain and unable to sleep has meant I have brushed off the dust as what better way to deal with Painsomnia than by cuddling a furry friend?

So dear old Shiny has become my saviour yet again. Years of cuddling has given him his curved posture and the fact he looks as miserable as I feel on these nights makes me feel even more comforted. It's as if Shiny knows my pain and cuddling him close has been a great comfort to me despite the fact I'm supposedly a grown-up.

Me and Shiny on a pain day.

In fact, Shiny has become such a comfort to me when the pain is high and morale is low that the unthinkable is happening. Shiny is beginning to wear out. There's a small hole developing in one of his seams - nothing major and perfectly fixable but he is also starting to get floppy. All my life I have had Shiny by my side. He has always been a lovely firm chunk of fur to hug in times of need but now his arms and legs are getting a little loose. I cannot let Shiny deteriorate - he has been too much of a faithful friend to suffer like this. I have had to face facts that Shiny has to retire! 

Luckily, I have some amazing friends who like to surprise me from time to time with gifts to brighten up my day. Last week I was fortunate enough to receive a parcel that helped to solve this problem. Meet Bunbury, sent to me by the lovely (and naughty) Helen. It's early days but I can already tell that Bunbury is going to be as naughty as the lady who sent him but I'll tell you more about that another time......... 

It was love at first cuddle!

Tuesday, 4 November 2014

Minvita Mulberry Superfood


A big thank you to Meg from Minvita for sending me a free sample of their Mulberry Superfood Powder. It's made from 100% natural and sustainably harvested mulberry leaves, and is free from wheat, gluten and dairy. According to the pot, it helps to supplement vitamins, minerals and anti-oxidants so I was keen to give it a try.

I love the colour of the powder.

I was a bit puzzled at first as to what to do with it as it is basically just bright green powder but luckily, there are a few helpful suggestions on the tub. I started by mixing some with my breakfast muesli and have also since tried adding some to herbal tea. At first, I used a bit too much - both the muesli and my tea turned into a sludgy mess. The mulberry powder thickens liquids so less is definitely more to begin with at least, about a level teaspoon for my herbal tea. I started with the same for my breakfast mix but have begun to increase this a little as I get used to the consistency. 

As far as taste goes, it was slightly bitter at first, possibly because I was using too much. I had a similar experience when I started using raw cacao powder but soon acquired a taste for it and now can't imagine my breakfast without a sprinkle of lovely chocolatey cacao. The same goes for the mulberry powder. Once I got used to the earthy taste (on the second or third tasting) it gave a lovely fruity element to each mouthful. The brightness of the powder also cheers me up each morning as it's more lively than the beigey brown of my muesli and cacao. 

Since using the powder daily, I have noticed it has given me a little more pep and my irritable bowel symptoms seem better too. My nails have also got a little stronger and shinier which is always a good sign. I would definitely recommend this product and will be buying it again when I run out. When i'm feeling a little stronger I hope to experiment with more uses, perhaps even attempt some baking!

You can find Minvita's Mulberry Superfood Powder on their website, along with their other products - all 100% natural. Have a look here.

You can also follow them on Twitter - @MinvitaUK, Facebook or check out the Minvita blog.


Monday, 27 October 2014

In Time

Another poem I started a while ago and only just remembered to finish (good old brain fog!) Rather apt what with the clocks going back.


In Time

Clock stopped
Won't go
Time slows
New lows
Days doze
Weeks go by
Years fly
No concept
Of time.
Which day?
Couldn't say
Without my
Pill tray.
No ringing bell
Still alarmed
Not well
Far from calm.
A day of ill
Is a week of well,
A week of ill
Is like a month of hell.
A month of ill
Is like a year,
A year of ill
Is like a life.
A life of this?
I couldn't cope
But then there's hope,
There's always hope.
Keep the faith
Trust in myself
I will get well
I can find health.
It'll get better, 
So will I
In time.........


© Charlotte Green

Wednesday, 15 October 2014

Fallen Leaves

I wrote this a while ago. It was one of the first poems I wrote since becoming ill. I never quite finished it until last night, when I discovered it hiding in my notebook. Reading it back reminded me how tough things were back then when all I could do was lie in bed, only having the strength to surface for mealtimes. It also showed me how far I've come. Even though I still have a long way to go, I feel proud to have made it this far.


Fallen Leaves

The leaves are falling, 
Drifting from the trees again
The wind takes them, 
Makes them spiral round again.
They dance so high 
As they fly across the sky.
I wish that I could travel
Far and wide like them.

I wish that I was light enough to ride the breeze.
To fly upon the wind and circle through the trees,
Never knowing, never caring where I head.
Instead I'm just a prisoner trapped in this lonely bed.

I was that dancing leaf
Twisting through the air.
Took my health for granted,
Didn't have a care.
Just like that dancing leaf
I wandered where I pleased.
Things are very different now
Because of this disease.

The wind, it disappears -
The leaves drop to the floor.
Without the breeze to lift them,
The leaves can dance no more.
They lie forlornly on the ground,
Their purpose gone.
Without the wind beneath them
They've no strength to carry on.

I am that fallen leaf
Lying on the ground.
If no-one's there to hear me cry,
Do I still make a sound?
Just like that fallen leaf
I'm starting to decay.
I lay here in my bed
And watch the years just slip away.



© Charlotte Green



Tuesday, 30 September 2014

Some of my MANY BREADS

Quite a lot of Gluten Free people out there exist on a super-healthy diet involving no bread, dairy or sugar. I'll admit I've tried my best to cut down on these foods and have almost eliminated dairy alongside wheat but I draw the line at cutting out bread and cakes. I'm sure I'm not alone in this - I couldn't survive without sandwiches and countless rounds of toast, not just because I love my baked goods but also because being severely limited in my physical abilities, these are pretty much the only things I can manage to make for myself whilst my husband is out at work. A life without bread, for me, does not bear thinking about!

There's a reason why they use wheat in pretty much every mass-produced loaf and roll. Turns out it's pretty hard to make decent bread without it. Initially this left me in rather a quandary. Most of the products I sampled were either too dry, too small, or quite often both. Sandwiches simply weren't satisfying any more because they were either the size of a postage stamp or the bread crumbled into sawdust as soon as I took a bite. I like to call this my 'Nigel Tufnel Problems' phase.

 

After a bit of market research (eating a lot of sandwiches) I found out the following:

My favourite bread was Sainsbury's Free From brown seeded loaf. For me, this is the most similar to normal bread. Not only does it taste great but it has a good texture so even though it can still be a little on the dry side, it manages to retain its shape. The drawback was the slices were just too small for a decent sized sandwich yet too big to warrant making an extra round.


I also discovered Genius make nicely sized loaves that taste great, although they are a little on the dry size for me, especially as I don't use butter in sandwiches. To begin with, buying this was a bit of a lottery. I think there must have been issues with production as sometimes I would open the pack to find huge air bubbles that rendered half the slices useless. Often the dough would not have been mixed quite well enough, resulting in a spiral pattern on the bread. It still tasted fine though. Annoyingly, I would also find the loaf hadn't always risen as much as it was supposed to and I was back to dealing with small bread again. Nigel Tufnell would not have approved!


Luckily, the folks at Genius are a lovely bunch. They seem committed to improving and innovating their products as much as possible and teething problems in a relatively new industry like this are to be expected. My complaints about small bread were dealt with quickly and I was sent vouchers to cover the cost of a new loaf. Which of course, I keep forgetting to use - I expect they've expired now. Still, it's the thought that counts..........

Recently, the quality of my Genius loaves has been much more consistent. I'm taking full credit for this as its obviously my feedback alone that has helped them to iron out any problems in their manufacturing process (they can thank me later.) But whilst the bread is a good size, it's still a little dry and not as nice as the seeded Sainsbury's. There was however a solution to my sandwich woes and it lay in my toaster.

Whereas no-one likes a dry sandwich, toast is meant to be dry, yet can also gain added moisture from butter. Yes, weirdly I don't have butter on bread but I do on toast. It would, I feel, be a criminal offense to eat toast without it. So now, what I do is keep my MANY BREADS in the freezer to stop them going mouldy. I use the Genius bread (toasted first) for sandwiches and the Sainsbury's seeded for rounds of toast. That way I get the best of both worlds - nice, small bread for toasty snacks and a decent sized slice for my sandwiches. It works really well for me even if it does take up a fair amount of freezer space.

I attempted a product photo of the two breads which, as you can see here, went a little awry. Not only did both breads conspire to be exactly the same size (this never usually happens) thus making me look a complete fool, I have also managed to burn the Sainsbury's (on the right) because it is a little thinner than the Genius and clever-clogs here toasted them at the same time. This is why people with severe ME should not be let loose in a kitchen!



I have also been testing (stuffing my face with) pitta bread, rolls and lovely fresh products from an amazing local company called Batch #5. That's TOO MANY BREADS  for one blog post so I'll leave it here for now and get back to you with the rest once I've done a bit more 'market research'.........


Happy Snacking!

Friday, 12 September 2014

The Beauty of Brokenness



From Wikipedia:
Kintsugi (金継ぎ) (Japanese: golden joinery) or Kintsukuroi (金繕い(Japanese: golden repair) is the Japanese art of fixing broken pottery with lacquer resin dusted or mixed with powdered gold, silver, or platinum.

The philosophy behind this is the understanding that the piece is the better for having been broken, that when something has suffered damage and has a history it becomes more beautiful.


I'd like to continue my analogy of a broken plate for another post about friendship, this time on a much more positive note. Whilst it's true that I have not found the support I had hoped for from some, the upside is I have found plenty of support in the most beautiful and often unexpected ways. For starters, existing relationships with my close family and friends have been strengthened. I feel closer now to those who have stuck by me than I ever have before. Also, I am more happy in myself than I have ever been. My self-confidence is finally blossoming for what feels like the first time in my life, because when you have nothing to lose you might as well go for it! I have also made many new, inspiring friends through the ME community on Twitter. In a matter of a few months, they have become an integral part of my life. We communicate daily, make each other laugh out loud many times a day and help each other through the ups and downs of spoonie life. It is strange in a way, to feel so close to people I have never met in real life, but the amount of love and generosity I have encountered from my virtual friends has left me speechless on many an occasion. I wish I could list each and every one of you by name but I know with brain fog (a common symptom of chronic illness) I am bound to forget a few.

So to those friends, old or new, real or virtual, to everyone who tweets me or posts on my Instagram or my Facebook, thank you for being there when I need you most. To Ray Butterlumps, Team Princess and my Spoonie Sisters, thank you for using your precious energy to make me presents and send me surprise post to make me smile. To SuperRoy Record Hunter, my fellow Spoonie vinyl junkie, thank you for traipsing around Birmingham on Record Store Day on my behalf. I know you were going anyway but only those of us with chronic illness can imagine the after effects of negotiating buses, queuing for an hour,  not to mention hiking round a city centre. 

It's not just ME tweeps either - the Healthies have rivalled my Spoonie friends for amazingness and sheer insanity at times! There's Barry the Phelps Finder who collared the Weasley Twins at a celebrity cricket match and got them to sign a birthday card for me. There are my dearest friends who send me love and sleep-masks, or stay up late spray-painting wheelchairs purple then drive from Worcester to Bath the next day for surprise delivery. I have learned from you that extreme fangirling and surprise visits are not so good for my health but they do make my heart swell several sizes. Thanks too to old friends who cheer me on even though I haven't seen them for over a decade. To those of you in real life who are brave enough to 'visit the cripple', especially those bringing flowers and Gluten Free cake, I am eternally grateful, as I am to my wonderful husband and family. To each and every one of you, I thank you all for putting me back together again. 

You are my Kintsukuroi - my golden repair.


Kintsukuroi (The Beauty of Brokenness)

You watch me fragment 
As I hit the bottom.
Shard-sharp spikes
Shattering against hard rock.
You do not judge.
You do not waiver.
You do not tell me what to do,
Or how to be.
Silently stooping to pick up pieces,
You cradle me in your hands
As if I weigh nothing,
No burden at all - a breath of air.
Your love flows over me.
Molten gold covering the cracks,
Cementing the joins,
Smoothing over chips.
I am whole again,
More beautiful than I have ever been
Because of you,
You and your golden love.


© Charlotte Green






Saturday, 6 September 2014

All apologies

'I'm sorry.......'

'I've been meaning to.......' 

I hear that a lot. I understand that life for you healthy folk is busy and that time has a habit of running away from you and so I make allowances. I sympathise because I know it's not easy, keeping up a friendship with someone who is chronically ill however there comes a time when the excuses I make for you simply aren't enough. 

So here's what I'd like you to do.......

Imagine you are in your kitchen.

You open a cupboard and take out a plate. Any plate you like. Now take the plate outside.

I want you to imagine yourself standing on the road, plate in hand. Raise your arm up high and throw that plate on the ground. Imagine it hitting the hard Tarmac.

What happens?

Perhaps it breaks first time. If you're lucky it might bounce but stay intact, or merely get a few chips or scratches. If so, pick it up.

I want you to imagine yourself throwing that plate onto the road as many times as it takes until it breaks. Until you see it shattering spectacularly into a multitude of shards, razor sharp fragments flying everywhere.

Look at the plate, or rather what is left of it.

Now say you're sorry. 

Imagine yourself apologising to the plate for breaking it.

What happens?

I'm guessing not much. The plate is still broken, the pieces still scattered forlornly over the road. 

So now you have a choice. 

You can try to fix this. You can pick up the pieces and do your best to put them back together. With time and effort maybe you'll end up with a fairly decent plate again.

Or you can give up on that plate. Sweep up the broken mess and dump it in the bin. Cut your losses. Go back to the cupboard and find another plate. 

It's up to you.

But realise this.........

Without the actions to back them up, sometimes words are just that, empty of any true meaning or value.

And sometimes, 'sorry' just isn't enough.




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


Thursday, 31 July 2014

Lucky

Happy anniversary to my amazing superhero husband - this poem only touches the surface of how awesome you have been during my illness. Here's hoping we have many more much healthier years together. 


Lucky

It's been three years since I became
Entitled to use your last name,
But no-one knew how life would change
So soon after the vows we made.
In sickness and in health we said,
But neither of us could have known
I'd have to spend my life in bed:
A prisoner in my own home.

Without you in my life
I wouldn't be here,
That is clear.
If I were not your wife
I would be lost,
I'd drown in fear.
You have cared for me
and shared with me
More than I thought
I'd ever need.

I could not have made it through
Without support and love from you.
So for those last three years I say
My thanks for each and every day.
For you have never once complained,
never grumbled, never moaned.
You never made me feel a burden,
Never let me feel alone.
You never once held me to blame,
Just dried my tears and eased my pain.
You made me laugh time and again
To keep me smiling through each day.

I'm proud to have you by my side.
You've proved you're worth your weight in gold.
I love you so much, Mr Green -
The truest love I've ever known.



Tuesday, 29 July 2014

A Taste of Honey

Something momentous happened on Saturday night.

I left the house, was driven approximately three miles across town and spent an hour in the company of my friends before being driven back. I sat in someone else's house and I drank a glass of Prosecco and for a whole hour I felt almost normal. That is, normal aside from the blurred vision, the sweating buckets and feeling like I was in a dream but then that's pretty standard these days.
Me and the mister socialising together!
It may not sound like much to Healthies, but to me, my loved ones and my fellow ME sufferers, it was epic. Let me put this into perspective for you. I have been ill for almost three years. I have not been able to work for that amount of time. For the last year I have been housebound apart from the occasional trip to hospital or the doctors for yet another pointless blood test. At my worst, only a few months ago (although it seems like a lifetime) I could not manage to watch TV, listen to music, talk on the phone, cope with sunlight, or pretty much do anything. On the rare occasions I was well enough for visitors, I could manage about twenty minutes before my symptoms became too painful and even then I would spent at least a day in agony recovering from the exertion. I had to spend 20 hours a day in bed, either resting or asleep in complete silence, with the blinds closed or my eyes covered. As a result of this, until Saturday night, I had not seen some of my friends for well over a year. I had not seen my best friend Claire's son since he was two (he's almost four now) and I had not been to her house for just as long. In fact, the last time I went to any house other than my own was in September. That's 10 months ago. Almost a year. 

So yes, momentous. Stupendous even. Absolutely amazing. A little scary too if I'm honest. And like all things in my life now, it had to be meticulously planned to the last detail to maximise what little energy I have and minimise the stress to both my brain and my body. I knew the plan was to order a takeaway but that was a non-starter for me. I'm avoiding so many things in my diet that my options for takeaways are extremely limited plus realistically, the amount of time it would take to choose a dish, order it, wait for it to arrive, then eat it would way exceed the hour I'd planned for my first trip out of the house. This meant I had to get my dinner sorted beforehand. It also meant I had a small window of opportunity for my visit to make sure I didn't interfere with my husband's takeaway because he would have to bring me home and get back to Claire's house before their food arrived. According to plan, my husband cooked my food and I ate it early enough to allow me an hour to rest before going out. In the end, I was too excited to rest well. The thought of being able to go out and socialise, even if only for an hour, was too much! The only downside was the fact that I would be arriving after Wilf's bedtime and so wouldn't get to see him. That would have to wait til next time. 

Me and my  bezzie mate Claire.
At ten to eight, we left. In order to cope with the car journey, I wore my ear defenders and sunglasses, set the passenger seat back so I could lie as flat as possible and I spent the journey breathing deeply with my eyes closed, trying to remain as calm as possible. Anything to preserve my precious energy and allow me a few more minutes with my friends. My husband dropped me off at the door whilst he went to park and I did something I haven't done in such a very long time. I rang a doorbell. Such a small and simple thing - the sort of thing you do all the time without thinking, but to me, it was like a rite of passage. Claire answered the door in record time and she looked as excited and dazed as me. We laughed and hugged in shared disbelief. I had made it!

The Wilfmeister. He likes trains.

An hour doesn't seem like a long time but what an hour it was. It was a celebration for many reasons. Between those of us gathered there on Saturday, we had a birthday, a house move, a pregnancy, then me with my first taste of freedom. I was so overjoyed to have made it out, to be part of my friends' lives again. The hardest aspect of chronic illness is missing the big events - the weddings, birthdays etc. How nice of my friends to combine it all into the one short hour I was able to be with them. I jest of course. It was all coincidental but to me it felt serendipitous. The planets had aligned to make my outing as joyful and eventful as possible. I even got to see little Wilf. He couldn't sleep and came down to say hello for a bit. I held it together at the time, as I was in too much of a whirl of excitement, but as I write this I am welling up. I hate the fact that I have missed out on half his life and that he probably didn't quite remember who I was. I know it can't be helped but these are the things that hurt the most, losing the moments that can never be relived. 

All in all, it's been emotional for me, processing all the events of that hour. Tears of joy and relief alongside the sadness mixed with hope at what I might be able to achieve as I slowly recover. The outpouring of love and support from my fellow Twitter spoonies has also filled my heart to bursting. It was like having my own team of cheerleaders willing me on to success, celebrating every step I made towards achieving my goal. I am already planning my next social engagement and can't wait for more adventures. My tiny taste of freedom has left me eager for more. I don't even mind the inevitable payback. My whole body aches, my head hurts, my vision is blurred and noise sensitivity has returned to make every whisper seem like a shout but I don't care. I know now I just have to rest and stay calm until my body recovers. As always, my wonderful Twitter friends are there to help me through the rough patches and it may take a day, it may take more but it will pass. I will smile through the pain because I did it. I did it and it was so, so worth it.

Tuesday, 22 July 2014

Mrs Crimble's Macaroons


 

The food of the gods.



 I have been a huge fan of Mrs Crimble's chocolate macaroons for years. It's only since discovering my wheat intolerance that the penny dropped and I realised they were gluten free. Hurrah! They are absolutely delicious. Crusty on the outside, moist and chewy coconut on the inside, and covered in lovely dark chocolate that goes all melty on your fingers. 

Unlike the macaroons I remember eating at my Granny's when I were a lass, they don't have rice paper on the bottom. That's because chocolate always trumps rice paper, at least it does in my opinion and a thick layer of dark chocolate is much better even if it is a fair bit messier. The drawback here is that my husband (who doesn't have a wheat intolerance) loves them as much as me. I keep telling him to keep his hands off my GF Crimbles but it never works.

Mrs Crimble's make lots of other GF products. You can find details of these and where to buy them, as well as place orders online, at their website www.mrscrimbles.com. The website has its own blog and a section for GF recipes so is definitely worth checking out.

You can also find @mrscrimbles on Twitter and Facebook.

Monday, 14 July 2014

Batch #5 Bread

I'm starting off locally with my first Gluten Free goodie. A few weeks ago I discovered Batch #5, a new company based in Bath that make lots of delicious treats and supply them to various local outlets. As luck would have it, one of these outlets happens to be near to my house so my husband was sent there one Saturday with instructions to get me ANYTHING!

Sliced Burly Brown Loaf

One of the items he bought for me was this beautiful thing - their Burly Brown Loaf. It comes both unsliced or sliced and is utterly delicious. I've had both and the only difference is that the sliced doesn't stay quite as fresh for as long as the unsliced, which is perfectly understandable from a sciencey perspective.

Two perfectly sliced bits of bread from my
unsliced loaf. Unheard of!

The loaf itself is, like all GF bread I have sampled so far, quite small in size and fairly dense in texture. Normally with mass-produced GF loaves this means the bread is heavy and dry but this was not the case for my lovely burly loaf. It was light, squidgy and fabulous! My usual tip to get round dry bread is to toast it but for the first time since I found out about my wheat intolerance, I was able to make a sandwich with fresh, untoasted bread. It was epic. No, really! In fact, the denseness turned out to be another plus point as it meant I was able to slice the loaf easily. No mutant wedge-shaped slices or piles of crumbs for me!

I could find no negatives to this product. it was equally delicious after a go in the toaster and a slathering of butter and marmite. Even the smallness of the loaf wasn't an issue, merely a good excuse to eat two rounds. All in all it's a huge thumbs up from me.   

You can find @Batch5Bakery on Twitter or visit their website www.batch5.co.uk for details of their products and where to buy them.

Saturday, 12 July 2014

We Share the Sky

Written late last night whilst thinking of all my virtual friends. I hope that one day I will be well enough to meet you all, as your support and love is invaluable. Until then, I will think of you all under the same sky as me, with the same stars shining down upon us.



We share the sky

We share the same sky

And look upon the same stars.

We are united, you and I, 

Forget how far apart we are.

We see the same,

We feel the same, 

Cut us and we bleed the same.

No matter we rule separate spheres,

The stars still shine and crush our fears

And one day, should our paths align

Together we will watch them shine.


© Charlotte Green

Wednesday, 2 July 2014

Going Gluten Free

My pain levels have reduced dramatically since I cut wheat from my diet. The few occasions where I have accidentally had something with gluten in have left me feeling terrible almost immediately after eating. It's quite a task working out what I can and can't eat. Some 'Gluten Free' products still contain small amounts of wheat which is fine for coeliacs but not for people like me with a wheat intolerance. There are also plenty of products not marketed as Gluten Free that supposedly don't contain wheat whereas others have wheat hidden in the guise of malt, barley, malt vinegar or even in ingredients you wouldn't expect to find wheat, like Soy Sauce. There has been a lot of trial and error involved in this process and it's an ongoing experiment to find things I can eat that taste nice and won't make me feel rubbish. I thought I would share my findings here so you lot can join me on my voyage through the wheat-free world of culinary delights!

I'll be posting photos, reviewing quality and taste etc so keep an eye on my 'Gluten Free Goodies' page as all GF posts are linked to automatically show up there to save you trawling through all my other nonsense. Aren't I kind? A lot of the food will be ready-made as I'm not well enough yet for making more than a sandwich. I'm also not the most inspiring chef at the best of times so if it's recipes you're after then this probably isn't the blog for you. Yet. Who knows - as my health improves, so too might my cooking skills.

So........ watch this space as I share my experiences as often as my limited energy allows!

Thursday, 26 June 2014

Payback

I know you're struggling today.
You used your spoons up yesterday.
You need a rest until it passes,
Go back to bed now, don't delay.

I know you're struggling today.
You did too much and now you'll pay.
I know exactly how you suffer,
Precisely how it all gets tougher.

How you're stapled to the bed,
Ribs of iron, limbs of lead,
There's a pounding in your brain,
Your kidneys sore, your liver pained,
Your heart beats as fast as Keith Moon's drumming.
In your head, a constant humming.
The food you eat makes you feel worse,
Don't call the doctor, call a hearse!
Every whisper is a shout,
Your legs feel like they're giving out,
Your neck becomes a block of wood.
You try to sleep no but it's no good.
Hot flushes and cold sweats
But listen - you're not beaten yet.

I know you're struggling today.
I know in each and every way.
But it won't always be this way.
I promise it will be okay.

I know you're struggling today.
You struggle every single day.
Just keep on smiling through the pain,
Look for the sunshine through the rain.

And one day you and I will find 
We leave this misery behind.
Won't need to struggle or give in.
One day my friend, we both will win. 


© Charlotte Green

Wednesday, 14 May 2014

About ME

The wonderful Sally Burch came up with the idea of launching a 'blog bomb' to coincide with M.E Awareness Day on May 12th. I thought I'd save spoons by combining it with a post for the fantastic Louise Bibby's blog chain. I'm a little late to the party but that's M.E for you. All the effort of raising money for Invest in M.E left me pretty shattered and it's taken til now to semi-recover but as the saying goes, better late than never!
  

About ME......

What is your name and how long have you had ME/CFS?

I'm Charlotte and I have been ill since August 2011.

Where do you live?


I live in Bath.


Age (if you're willing to share)


38.


Tell us 5 things about you that the people in your life probably don't know (non-illness related):


1. In my youth I have won certificates for flower arranging, embroidery and making the most cups of tea in a week. Rock n Roll.

2. Previous career choices (before becoming a professional ill person) include teacher, skateboard shop manager and website administrator. 

3. I have my belly button pierced and a tattoo on my left foot.

4. I seem to hate foods that begin with 'b' - bananas, Brussel sprouts, baked beans.......

5. I am a complete geek. Star Wars, Lord of the Rings, Harry Potter, computer games - these things make me happy. :-)


Tell us 5 things about you that the people in your life probably don't know about your life with CFS/ME:


1. I first got ill three days after I came back from my honeymoon (coincidentally my birthday too - oh joy....) and have spent my entire married life ill. I have a very understanding husband thankfully. It's possible I'm allergic to marriage.

2. I rarely get tired - I have a load of other symptoms that come first and leave me heading back to bed. The pain and headaches are the worst.

3. Being ill has made me a better person and helped me to appreciate the good things in my life.

4. I have been housebound now for best part of a year. I don't really mind these days. I'd rather have a week of being able to cope at home than an hour or two out of the house followed by a week in bed recovering.

5. I hate feeling so ill all the time and life is very tough when you are in constant pain or discomfort but bizarrely I am happier overall now than when I was healthy and active. I find it hard to recognise the person I was back then - all she ever did was work and think about work. In hindsight it was a pretty miserable existence. 


What one thing do you think most people wouldn't know about living with ME/CFS that you'd like them to know?


That any stimulus, be it physical, mental, emotional or sensory makes me worse. Everything other than resting quietly with eyes closed has a detrimental and energy sapping effect on me - even sitting in the sun for ten minutes or having a short conversation.


What is the most frustrating aspect for you of living with ME/CFS?


That no-one seems to get it or even make an attempt to understand. Really ill people are left isolated and forgotten by the world and nothing is done about it by the mainstream media or the medical profession. Many friends and family turn a blind eye because of misinformation and confusion. We are left to raise funds for our own research despite being too poorly to manage the most simple of everyday tasks. This has to stop!


Contact details (if you want to give them) - blog, Twitter, FB etc
Twitter@mookpixie

Any other bloggers who want to join in the blog chain, please copy this and fill in your own answers. Then email Louise@GetUpAndGoGuru.com or send Louise a Tweet so she can link to your blog post in her original post. 

You can check out all the other blogs taking part in #may12thBlogbomb here: http://sallyjustme.blogspot.com/2014/05/May12BlogBombLinks.html