Tuesday, 20 March 2018

The PACE trial - a complaint.

This is a tough read - I make no apologies for that. I felt it was important to share my experiences of how the PACE trial has indirectly affected me, and so the following is an excerpt from my letter supporting Dr Sarah Myhill's campaign against those responsible for the trial. If my story moves you in any way and you wish to help, please sign the petition supporting Dr Myhill's complaint, available here.

I first became ill in August 2011, when I came down with a nasty viral infection that lasted several weeks. I was diagnosed first with a chest infection, and then a sinus infection and although both went away with antibiotics my body never really recovered. I began to suffer with aches and pains all over my body as well as swelling in my hands and feet. I tried carrying on with daily life and going to work (I was an Infant School teacher) but eventually my body gave up on me. I was signed off work at the end of September and unable to do anything except lie in bed and sleep. Since then, I have not been well enough to work at all. My doctor diagnosed Post Viral Fatigue just before Christmas 2011 and then when I was still no better by October 2012, my diagnosis was changed to ME/CFS.

With regards to treatment, initially I was given no help or advice by my GP. I was left to get on with things myself, with no real idea what was wrong with me, or how I could get better. By November 2011, when I still wasn't able to go back to work, I was referred to Occupational Health through my employers and had to attend assessments at the Bupa Centre in Bristol. Staff there were very supportive and told me I had a very real, physical illness and that my best bet of recovery was to exercise, push through my symptoms whenever I felt bad, and to try to function as normal as best I could. Initially they thought that my health would improve within 'four to six weeks', which seems laughable now. They also told me that counselling and CBT would help, and as I had no reason to doubt their advice, and nowhere else to turn with regards to treatment or recovery, I took them at their word.

So, I undertook six weeks of counselling through BUPA, despite not really understanding why or how it would help, and I did my best to struggle through each day, forcing myself to go into the school I worked at in a voluntary basis a few hours a week so that I could keep up to date with developments at the school, and try to improve my cognitive processes and my stamina. This carried on for about a year and a half and was a living hell. I spent most of my time laid out on either the sofa or bed, suffering greatly from the effort of pushing myself through the pain. I kept a short diary for most of it to track my progress, and at some point bought an exercise bike because I kept being told by BUPA  'exercise will cure you'. During the summer Olympics 2012, I can remember watching events at the Velodrome for inspiration whilst peddling away to try and make myself better even though I would then spend the next few hours collapsed on the sofa, trying to recover. Eventually, things got to the point where I still wasn't fit for work so I asked for my GP to refer me to CBT. Again, another six week course of sessions followed, and although it helped me to cope with the psychological aspects of dealing with a chronic illness (grief, anxiety etc) it did nothing to ease my physical symptoms, and in fact, served only to encourage me to ignore my symptoms and use positive thinking/mindfulness to again try to push through my suffering.

By this time, my employers were understandably getting increasingly fed up at my long term absence. I was bumped up at BUPA to see a doctor, instead of the more junior advisors. Again, he was wonderfully supportive and reiterated that ME was a very real physical illness but this time, in contradiction to his colleagues, he told me that exercising and pushing myself were the worst things I could do. It was such a relief to hear that I didn't have to push my body any longer, but by then, the immense damage had already been done. I am convinced that the medical professionals I saw initially would have looked at NICE guidelines regarding my illness. Those NICE guidelines, based largely on the so-called evidence of the PACE trial recommended CBT and Graded Exercise, and so those professionals would have given that advice to me in good faith, expecting that anything recommended by NICE would be accurate, fit for purpose, and would therefore lead me towards better health. They truly believed that the advice they gave me would lead me back to wellness, and why wouldn't they? Why would NICE put incorrect and harmful advice on their website? It has to be because the research undertaken by the PACE trial showed that such interventions would be helpful - research that we now know to be extremely flawed at best, and purposefully untruthful at worst. 

It is shocking that it took nearly two years of illness for me to be seen by someone with a proper understanding of ME/CFS, who knew enough to realise that CBT and GET would not help me in any way. For there to be this disparity within the same medical establishment concerns me greatly, and I have to wonder how many other people were similarly affected. Perhaps if I had been given the correct advice at the start of my illness, I might be recovered by now, or at least be able to lead some semblance of a normal life. 

By now, BUPA had nothing more to offer me treatment-wise and my employers were unhappy that the situation was still no nearer to resolution. I felt I had no option but to resign from my job as I had not been well enough to teach for over a year and a half. It was at this point I asked my GP to refer me to the ME/CFS services in Bath. By this point, I was really struggling to even leave the house for medical appointments and when I was offered a place on their six week Fatigue Clinic, I raised concerns that I would not be physically able to attend and that there was a real concern that in doing so, I would make myself even more ill. I was told to attend anyway, even though I could easily have been given a place on the same course in the future. The implication seemed to be that refusal to attend for any reason, even due to my poor health, was seen as a refusal to undertake treatment and could therefore affect my chances of claiming benefits.

As I suspected, the effort of getting myself to the hospital and back once a week was too much for me. I was clearly the most badly affected person there, and it would take me the rest of the week to try and recover enough to attend the next session. Eventually, on top of the damage done by following BUPA's advice, it all got too much. I was unable to get to the final session, and then had a massive crash that worsened my symptoms to the point that I was utterly bedbound for over a year, unable to cope with any stimulus at all, forced to spend all my time in my dark, silent bedroom. It was a very dark time and I became too ill for visitors and couldn't leave the house, even for the 5 minute trip to my doctors surgery. 

I received no help or support from the NHS during this time. I was too poorly to attend ME/CFS services, and couldn't even manage a short phone call appointment with them. I expect I have been signed off from their books as it has been several years now since I last had contact with them. My GP has been emotionally supportive, and very helpful in terms of my benefits claims, but she has been totally useless in treating or even understanding my illness. If I raise the issue of a new symptom with her, she just shrugs and tells me she doesn't know what that is. There seems to be an unspoken implication that she doesn't believe my symptoms are as bad as I think they are, and that the pain I experience daily can't be as bad as I make out. The painkillers prescribed to me do nothing to lessen the type of pain I am in, and so I have spent the last few years learning to cope with my suffering and my limitations completely by myself. 

In short, I strongly suggest that the impact of the PACE trial is the reason why my illness has not been taken seriously by my GP, and also why I was initially given incorrect advice by BUPA, advice that actually made me significantly more ill than I was beforehand. I have had to fight every step of the way for tests, referrals, and for an MRI scan to rule out the possibility of Multiple Sclerosis. Even then, the Neurologist I saw was completely condescending towards me, implied that my illness was down to my own anxiety and hypochondria, then suggested I take up swimming, even though I was completely bedbound at the time. She even managed to 'forget' to forward my MRI request, so that my husband had to chase it up and my scan ended up happening over six months after my initial appointment. I attribute her attitude, and that of my GP to the way ME has been mislabelled as a psychosomatic illness, a mislabelling that the authors of the PACE trial have done their utmost to perpetuate as it backs up the findings that they erroneously claimed as a result of their trial.

At no point have I been offered any real, suitable treatment for my ME symptoms. The only time I get any real medical help is when I go to my GP with something unrelated to ME/CFS. It is a huge concern that any new symptom I experience could easily be passed off as ME and therefore dismissed, leaving me at risk of developing a secondary condition. I feel completely isolated, let down, and left to rot by a medical profession that should be helping me to get better, but have actually only served to make me far, far worse. It is perhaps telling that despite the harms done to me, and the disbelief I have encountered, I still consider myself lucky when I compare my experiences with those of other ME/CFS patients who have had even more horrifying and damaging encounters. It is almost four years since the crash I experienced as a result of following bad medical advice, and yet I am still housebound, still in pain and discomfort every single day, still severely disabled, and still without any treatment plan or medication, other than what I have managed to research myself through speaking to other patients online. My mental health has also been affected as a result of this. I now live in fear of having to see any medical professional, even my own GP. I fear having my benefits taken away like so many of my chronically ill peers, and there are times when my pain and suffering is so severe that I consider suicide as the only viable option. I don't want to die. There is so much more I wish to see and achieve in my lifetime, and yet after years and years of suffering in silence, there are times when all hope leaves me, and I consider how much easier it would be for myself and my loved ones if we didn't have this burden to cope with. Thankfully, those moments pass, but it is always a concern that one day, the pain might continue for just that fraction too long and push me to the point of no return. If this is lucky, I dread to think of the many sufferers in a worse position than myself. 

I can't help but come back to the line from the Hippocratic Oath, “I will utterly reject harm and mischief,” and wonder how those responsible for the PACE trial have been allowed to peddle their lies and mischief for so long, causing great harms to countless people like myself. It is scandalous that they have been able to get away with such behaviour, and indeed have been rewarded for it by the establishment. Lives like my own have been ruined by this travesty. Severely ill people have been maligned and ridiculed by a profession meant to help them. Many sufferers have taken their lives, unable to cope with the debilitating nature of our illness coupled with the devastating affect of being disbelieved about the severity of their suffering. It needs to stop and it is within your power to help make that happen. The PACE trial has been discredited for changing outcomes and fiddling with results, but yet still the findings are influencing the way patients are treated, not just in this country but also around the world. 

In this country, NICE are now in the process of reviewing their guidelines for ME/CFS, and I can only hope that they will listen to people with this illness and remove both Cognitive Behavioural Therapy and Graded Exercise Therapy from their recommendations. I feel they would be much more likely to do so if those behind the trial were held responsible for their actions. There needs to be a clear message sent that tampering with research outcomes at the expense of the severely ill is not to be tolerated. I urge you to uphold Dr Myhill's complaint and bring those responsible to task for the many lives that have been affected by their poor science.

Friday, 3 November 2017

Life in halls

Leaving home for the first time is one of those experiences that sticks with you, no matter how long ago it was. For me, it was the autumn of 1993, I had just turned 18, and I can still remember vividly the mixture of excitement and sheer terror I felt as we packed up my parents’ car with all my worldly goods and made the 90 mile journey to Chester for the first time. 

Looking back, I wish I could tell you how amazing it felt, to be on the cusp of such a huge change in my life, but to be honest, I wasn’t all that keen at the time. My main concern was being apart from my then boyfriend, who was off to Cambridge (the polytechnic, not the university. My pulling powers have never extended to Oxbridge candidates) and this was a time before tuition fees so for me, going to university was simply a way to put off having to find a proper job for a few more years. It was almost a halfway house between being at home with my parents, and being out in the real world. I was to live in halls, and have my meals provided in the canteen, which meant all I had to do was keep myself clean and turn up to my lectures - both things I managed with a varied amount of success. In hindsight, I sound really ungrateful of the opportunity, but even then I knew how lucky I was. Living in halls was a blessing as it meant I didn’t have to find my own housing, cook for myself, or worry about travel to and from college. I could pretty much just roll out of bed, into my lectures, which I did on numerous occasions. I’ve never been a morning person. 

My pals Carol and Becky in my room, Astbury House.

Despite the seemingly easy option of being in halls, it did come with its own set of challenges, the first being that for some reason, Astbury House (my home for the next nine or so months) did not have normal plug sockets. Instead, we had to fit these weird miniature plugs to everything. I say ‘everything’ but this was the early nineties. Not many people had a TV or a stereo in their room, and the only computers on campus were in the library. In fact, I managed to go the whole three years of my degree without using a computer at all. I hand wrote all my essays, which seems unthinkable now. Anyway, I had my portable cassette player, and a tiny black and white TV that had to be tuned by twisting a dial, and even then I only seemed to be able to get S4C, which is the Welsh equivalent of Channel 4. It took me a good few minutes of Pobol Y Cym to work out that it wasn’t just static interference and that they weren’t actually speaking English.

So, TV was out, apart from the odd foray down to the common room to watch Supermarket Sweep, and music never did sound as good on my crappy little stereo, but that was ok because I had friends to make, and people to socialise with. This was my chance to start a whole new chapter in my life and make lifelong connections with likeminded people! Or not…….

They say the people you meet in your first week are the people you spend the next three years trying to avoid. Now, whilst that does sound exceptionally harsh, I can see the logic. Astbury was a large building, which meant it had a fair mix of students in it. Unfortunately, most of them seemed to be the type that never spent any time in halls, so I ended up making a lot of friends in Fisher, the similarly huge hall of residence opposite. It’s not that I didn’t meet anyone nice in my own halls, because there were plenty of interesting people. People like the girl along the corridor who insisted on having very vocal sex every time her boyfriend came to stay. She was lovely and friendly, mind, although it was a step too far when I got invited in to her room and they were both still in bed, naked. And then there was the time she told me to guess their latest new hobby. It could have literally been anything, but even I wasn’t prepared for the cheery sing-song announcement of “buggery!” I made my excuses sharpish and left. 

There was also the girl opposite me, the very first person I spoke to when I got to halls. She was lovely too, but again, her visiting boyfriend not so much. He was a bit scary, if I’m honest, and rumour has it that they both got thrown out of the Christian Union when someone accused them of being Satanists. They really weren’t that bad, but they did allegedly gatecrash a seance in Fisher and start speaking in tongues, which did freak out everyone far more than the actual seance. Thankfully, I wasn’t there. Speaking to dead people is not really my idea of a good night.

Aside from all this, I had my own boyfriend to think about. There were no mobile phones back then, and email hadn’t become a common thing yet because it meant booking a slot on those computers in the library, so we relied on writing letters and one phone call per week. Every Wednesday afternoon, I would loiter in the stairwell because it was the only way I would hear the one, solitary, incoming calls only phone from my room. I’d like to take a moment here to spare a thought for the poor sod who lived in the room next to the phone and the front door because they really didn’t get any peace at all. In Astbury, it was a friendly chap called Jim, who always seemed keen to stop for a chat after he let someone in, even after the umpteenth time. As for the phone, it was mainly me answering it every Wednesday, sprinting up and down the stairwell like a whippet just in case it was my boyfriend. Quite often it wasn’t. I lost count of how many times I went to knock on door nine, looking for some guy called Matt so his mum could speak to him. Matt was never in, and weirdly enough, I actually ended up dating him in my second year, which tells you just how well waiting for all those calls from Mr Cambridge went. 

Me and my mum, looking out from my window in halls.

In summary, living in halls was an interesting experience. It doesn’t sound that appealing, now I write it all down many years later, but actually I had a great time. Yes, it was challenging and daunting at times, and yes, I ate far too many Pot Noodles and rolled up to too many lectures in the clothes I wore the day before, but for me, that was what being a student was all about. I guess times have changed a lot, but regardless, going off to university is still a privilege that not everyone gets to experience. I loved living in halls, despite the questionable company, the dodgy electrics, and a communal bathroom that looked like something out of a horror movie. It left me with amazing memories, fantastic anecdotes, and that’s before I’ve even got to the good bit of what me and my mates from Fisher got up to. Alas, for now, I’m already a good 300 words over my limit so the good stuff will have to wait for another time. As for you lot, starting your life away from home for the very first time, I am entirely jealous of you. Enjoy every single bit of it, especially the sad bits and the weird bits, because those are the bits that make you howl with laughter when you look back years later. I sometimes wonder what happened to Noisy Sex Girl. Lord knows what she and her boyfriend are up to these days.

UPDATE: This news just in from my Facebook. Worryingly, we're not sure if it's the same person! 🙈

Friday, 12 May 2017

The Aftermath - living with ME

Monday 8th May 2017

I was out of the house for almost four hours yesterday, which is pretty epic for me. We were invited to a family get together at my sister-in-law's mother's house, and as I don't really get to see her or my nephews very often, I was delighted to be invited and determined to attend. As all outings are for me these days, it was lovely but it was hard work. Leaving the house and socialising for a few short hours is akin to a Herculean task when you have an illness. It takes planning, psyching yourself up for the inevitable energy expenditure, and even when you're back home safely, tucked up under your duvet, you still have to contend with the fact that the worst is yet to come. As the saying goes, payback is indeed a bitch. When I post up photos of my exploits online, I'm always happy and smiley because I have actually managed something pretty fantastic - I have left the house. I like to focus on the positives because no-one likes a Debbie Downer, and endless photos of me feeling poorly wouldn't do anyone any favours however that makes it very hard for people to understand just how horrible my illness actually is. So, in the spirit of raising awareness during M.E. Awareness month, I thought it was high time I went into a bit more detail about what happens next, when the camera is turned off and I have to deal with the aftermath. For every smile you see on social media, there is a hefty price to pay behind the scenes.

All smiles - a lovely time with family.

Yesterday, after my outing, I got home and staggered straight up to bed. No mean feat when your legs are protesting every wobbly step and your sense of balance has gone flying out of the nearest window but somehow I managed to ricochet my way up the stairs and snuggle down under my duvet. And then out of my duvet. Then under it again. My internal thermostat is pretty buggered at the best of times and only gets worse when I'm recovering from an activity. It's like a hot, sweaty, then suddenly freezing cold, horizontal version of the Hokey Cokey, only with added duvet and nowhere near as much fun. If I had a pound for every time I had to put my left leg out, then my left leg in, I'd have a fairly decent pile of cash by now. 

Anyway, I stayed put in my pillow fort for the rest of the day, dozing in and out of consciousness, then somehow managed to end up downstairs again for a fish-finger sandwich around 8ish. Then it was back to bed for some much-needed peace and quiet whilst I tried to ignore the searing agony I was in, hoping that sleep would fall upon me sooner rather than later. Sadly, my brain was far too wired from all the sights and sounds of being out of my little bubble. I lay awake, tossing and turning as much as one can when one's body feels like a sack of rubble, finally managing to drift off at around 6.30am, just as I heard my husband getting up for work. 

The cat miaowed me awake at about 11.40am and I really wish he hadn't. Today, as expected, the after-effects of my little jaunt are starting to set in. I came round in a pool of sweat, groggy and disoriented, with my jaw firmly clenched from sleeping through the pain. My body feels like I have been thoroughly beaten with a large stick, and my head is sore and woolly. Walking is an issue - my legs are leaden and precarious. Being upright long enough to get to the bathroom or make it downstairs for food is a real challenge. My brain won't work properly and my eyes are blurry and sore. I am currently typing this with one finger because my arms are both sore and numb at the same time. I didn't even know that was possible, but there you go. I'm often left baffled by the new and exciting ways my illness finds to torment me.

Even the cat feels sorry for me today.

In short, I feel broken. My moral is low and I just had a little cry because amongst the guests yesterday, were a heavily pregnant lady, and someone undergoing a course of chemotherapy, yet I was the one who had to leave first. I was the one flat out on the sofa as everyone else buzzed happily around me. I feel so useless and frustrated that I am reduced to this heap of awful, just from sitting and chatting and eating delicious food with lovely people for a couple of hours. Furthermore, I am despondent because I know this isn't even the half of it. I don't feel the full effects of an outing until at least 24 to 48 hours afterwards, which means that I have a whole truckload of even more awful waiting for me in the next day or two. All I can do is hunker down in my duvet bunker and try to sleep it out. Eventually the pain and discomfort will even out to a more manageable level. Until then, I am stuck in the half-light and silence of my room as the world beyond it is far too bright and noisy for my poorly brain. Today's beautiful sunshine is wasted upon me, as it hurts my eyes. Every little sound I hear feels like someone scraping the inside of my brain. Birds singing outside, planes flying overhead, even the cat snoring is too much for me to cope with today. I suspect I may be needing my trusty ear-defenders soon because my ear plugs just don't seem enough on days like today.

So yes, I had a lovely time yesterday. It was the first time I had made it to Anne's house since before I got ill almost six years ago. I had a wonderful time with family and friends, was looked after wonderfully and given delicious food to eat. I smiled in all the photos because just getting there and coping with all the hubbub is a massive, massive achievement for me. I am truly thankful that I am able to take part in social gatherings like these now, as there was a time where I honestly did wonder whether I would ever be well enough to leave the house again. To be able to have a small slice of normality feels wonderful, even if I know the inevitable comeback will feel like a journey to the bowels of hell and this is why I will keep on pushing my boundaries little by little, as my body allows, so I can experience the highs of life as often as possible. I just wish that the following lows weren't quite so low because  nobody should have to live like this, with no viable treatment options, no cure, and a large proportion of the establishment denying your illness is real. Let me tell you, the pain I'm in feels pretty damn real to me right now. I would give anything to be able to go anywhere and do anything without this level of suffering and misery afterwards. Treasure your freedom and your independence - you really don't know how lucky you are.

The bags under my eyes are designer, darling.

Thursday, 11 May 2017


"You must say,"
They tell you
As they welcome you in
"You must say if it's too much"
And you nod
And you grin
But when you finally find
That you can handle no more, 
When your body is screaming,
Limbs leaden and sore,
And you try your goodbyes
Before you fall to the floor 
Then there's always ten reasons
Or more to delay you
There are photos to take
Or leftovers to fetch you
So you nod 
And you smile 
like an ungrateful wretch
Because all you would like
Is some peace and your bed
But you're in someone's house
Being 'human' instead
Even though noise and light
Is attacking your head
And your heart it keeps racing,
Your limbs feels like lead,
So you wait patiently
And you try to join in
As they search for a camera
And you nod 
And you grin
But the batteries are dead
And the irony's not lost
So you wait even longer
No matter the cost
Because you ate all their food
And you managed some wine
You don't want to be rude
So pretend that you're fine
And the camera is back 
But the batteries won't work
And there's flapping and fuss
So you nod 
And you smirk
And suggest that perhaps
As we all have smartphones
Could they not just use that
So that you can get home  
And you nod 
And you smile 
For these people you love
You try to ignore 
all the noise and hubbub
Then as soon as it's done
There's leftovers to get
There are goodbyes to say
So you can't leave just yet
So you wait on the sofa
And try not to mind
That you feel like a truck
Has hit you from behind
And then finally
Once you are able to rise,
Despite the pain in your back
And the ache in your thighs,
You make for the door
And are helped outside
By some wonderful people,
So thoughtful and kind,
But they stop for a chat
And you don't have the heart 
To tell them you're struggling
And cut them off short
Or explain you can't stand
That your legs feel like sponge
And you really can't handle
Being upright this long -
You're way past your limit
But you nod 
And you breathe,
Slowly sink to the concrete
Where you wait patiently
For the talking to cease 
And you silently pray 
For some kind of release,
Someone to take you away,
For the heavens to part
And a giant hand to come,
Pluck you from pergatory
And spirit you home
But the hand doesn't come
So you nod 
And you smile
Prepare to get comfy
On the concrete a while
And then just when you think
You're ok on the floor 
The conversation ends
And you must stand up once more
With you knees a-creaking
And your spine fit to snap
You somehow get back 
to the car and collapse

And when you are finally 
Home in your bed
Surrounded by silence
And darkness instead
You grimace through the pain
And you ask yourself why,
Why your life is so hard,
And you cry, 
and you cry,
And you cry until there 
are no tears left to cry
Because all that you wanted
Was to see those you love
Not be left in such pain
That you feel you might die,
So you ask yourself even though
You know there's no 'why'
And you cry, 
and you cry, 
and you cry..........

© Charlotte Green
11th May 2017

Wednesday, 18 May 2016

Princess for a day

This is just a quick post to update you all with news from this year's M.E Awareness campaign, and share photos of my chosen outfit for The Princess and M.E's fundraising campaign.

I was very excited this year to dress up as I had chosen my favourite princess - Princess Leia Organa from the Star Wars film. Not only is she a kick-ass space princess, but she is also a general and leader of the rebel alliance. She also has great hair.

The real Leia never got her own light saber. Boo!

So here I am in all my finery. the light saber was super-imposed unfortunately. Probably for the best as I get a bit clumsy when I've overdone things. I posted this, and several other photos that you can see below, onto Facebook, Twitter, and Instagram along with my justgiving link and the response was amazing. I even managed to get the approval of Mark Hamill, who plays Leia's brother Luke Skywalker. I tweeted him the photo and he liked it, which means he must have thought I made a pretty good princess! Needless to say, I'm just a tad excited about that!

The actual Luke Skywalker liked my tweet!

Over the course of the month that my justgiving page has been active, I have managed to raise just over a thousand pounds! I am so unbelievable grateful to everyone who has supported me and donated to my Princess appeal. The money raised has gone to Action for M.E, a charity based in Keysham (just down the road from me) who have just announced the funding of two new UK research projects. Perfect timing!

The amount raised was out of this world!

So, once again, THANK YOU to everyone out there for cheering me on and helping me raise such a phenomenal amount. There is still plenty of time to sponsor me, if you haven't already, or even sponsor one of my fellow princesses via our Team Page. As a Team, we have been raising money for a whole host of M.E charities so you're spoilt for choice really. My last thank you must go to my fellow princesses, and Queen Sian in particular for putting in an amazing amount of effort to keep the whole shebang going. Sian is a poorly person, just like myself, yet she manages to organise all the princesses with grace and style. Thanks to her and her original idea of dressing as princesses, we have managed to raise a great deal of money and awareness over the last few years, as well as forge strong friendships within the members of Team Princess. it feels great to be able to make a difference even if we're too poorly to leave our beds. Here's to next year - I have absolutely no idea how I shall top this, but I shall try my best. 

How does this thing even work?
Hair game is strong with this one.
I discovered my photo editing app has a Star Wars section so I couldn't resist.

Even space princesses need a break.
The real Princess Leia in all her glory.

Sunday, 1 May 2016

May the Force be with me.

I've always liked May. Two bank holidays, warmer weather (supposedly), flowers blooming all over the place - what's not to love? Growing up, it was also a time of school fairs and dancing round the maypole. I remember being in the local newspaper because I danced round one at Junior School, and somewhere I still have the competition-winning programme cover I designed for another year of the school's May celebrations. 

Since becoming ill, May has taken on another significance. It is M.E. Awareness month, which for obvious reasons is a cause of great importance to me. International M.E. Awareness Day itself falls on the 12th of May every year, so chosen because it is Florence Nightingale's birth date. How many of you knew that the Lady with the Lamp was severely affected by M.E. for a large proportion of her life? I certainly didn't until I became ill with it myself.

This year, I am as usual raising money as part of Team Princess by dressing as a princess for the day. You'll have to wait and see which princess I have chosen but I may drop a few clues over the next week or so. Two years ago - the first year I dressed up for Princess Day - just putting on my outfit and posting photos online was enough to use all my energy and leave me suffering the Post-Exertional Malaise that is characteristic of my illness. I am very pleased to report that since then, the gradual improvements I have been making mean that this time, I have a lot more to contend with than pretending to be Sleeping Beauty for the day. This time, May is going to be a month of milestones and I am going to need every ounce of luck and strategic planning to get through it. Still, I like a challenge. 

It starts off gently with a visit from the hairdresser tomorrow. I need to smarten myself up ready for all the gadding about I am planning to do. Then May the 4th is Star Wars day so I shall swan around in my Hannah Solo dress for the day, pretending my hairdryer is a blaster. The following week, the real business gets going. There's a birthday celebration for fellow princess Ali, so sparkle and glitter is compulsory. Then comes Princess Day on the 12th and the unveiling of this year's outfit. Normally that would be enough for one week, but foolishly perhaps, I have arranged my first trip to the dentist in several years for the following day. That's right. Friday the 13th. What could possibly go wrong?

Anyway, my teeth are in desperate need of a going over, and this is going to be a huge step for me, what with the traveling there, the unfamiliar surroundings, the bright lights and noises of the machinery. I'm tempted to say that if I raise enough money then I'll go dressed in my princess outfit. I'm going to look odd enough in my shades and ear defenders so I might as well go the extra mile of ridiculousness. Providing I survive the experience (debatable) then that gives me some much-needed time to recover before my next major milestone because at the end of the month, I am going on holiday. That's right. Mostly housebound mook will be on tour for the first time in about 4 years. I will be leaving the house for longer than a couple of hours. I will be staying somewhere that isn't my all-too-familiar boudoir. I am getting out into the big wide world and I can't wait! 

Now, before you get too excited, let me put a little perspective on this. I am still supremely ill. I manage so well day to day around the house because I don't push myself to go to places that will over-stimulate my highly sensitive brain and body. Hence, my 'holiday' involves travelling less than an hour away to Center Parcs, where I shall probably spend the next five days zonked out in a different, more expensive bed whilst the husband runs off into the forest to fire arrows and shoot pretend pigeons. It's hardly a grand world tour, and a whole world away from my last proper holiday, which was my honeymoon five years ago to the Dominican Republic. Still, for me and my poor little body, it is every bit as epic an adventure as an eight hour flight half-way around the world. It is going to cost me the high price of pain and suffering, probably whilst I am there, definitely when I return. Despite this, I am so very excited to even be able to contemplate going. I am more than happy to pay that price for a taste of freedom and a change of scenery, even if it is just the view from a very different bedroom window. Of course, I may need reminding of that fact afterwards, when the inevitable recovery time has me bedridden and bewildered, but even so, I will be happy. Happy but hurty, because I will have achieved something I thought I might never be well enough to do again. And then looking forward, once I have managed this trip, maybe I can plan to visit my parents by the end of the year? That would be nice. I haven't made it back home for several years. It would be nice to save mook ma and pa the car journey down to see me.

So yes, expect big things this May - but not so much for June, where I shall largely be wallowing in a pit of ow and ugh. I shall need the force to be with me every step of the way, and if you wish to m'aidez this May Day, you can sponsor me to become a princess and raise some money for local charity Action for ME. Even if you can only spare a pound or two, it is all so very much appreciated. If being ill has taught me one thing, it's that even the tiniest of steps is still a step forward. I'd love you to help me keep taking those tiny steps towards getting well.

You can visit my justgiving page to sponsor me or visit Team Princess' team page to choose one of the many other M.E. Charities we are supporting this year

And we are also raising money for the following charities that aren't yet available through justgiving.

Monday, 21 March 2016

My Team Princess interview for Queen Sian's blog.

The wonderful Queen Sian over at Me, Myself amd M.E is running a series of interviews with members of Team Princess ahead of our fundraising campaign for M.E Awareness Day in May. Below are my answers to Sian's questions which are also available to view along with other, forthcoming Princess interviews on her blog.

Last year dressed as Sleeping Beauty.
Interview with Princess Mookpixie
Member of Team Princess since 2014

When were you diagnosed? And were you ill for long before then?

I was diagnosed in October 2012, just over a year after first becoming ill.

What did you do before you had ME?

I was a Reception teacher.

How did ME first present itself in you?

Chest infecton/sinus infection that wouldn't go away, followed by complete bodily melt down.

What is the biggest thing that you miss that ME has stopped you from doing?

Dancing and listening to music, reading books, independence, walking, being able to go wherever I want whenever I want...... to name but a few.

How do you remain hopeful and/or happy?

I remind myself of the many reasons I have to be grateful. I also think back to how I was at my worst point and celebrate how far I have come both physically and mentally. Getting upset or angry will not change my life or make me well so I  am determined to enjoy myself as much as my limited energy will allow. I laugh more now and feel happier and more confident about myself than I did when I was healthy. 

What were your reasons for joining The Princesses and ME/ Team Princess?

It just seemed like a fun thing to do and a great chance to make friends. 

Do you have any specific plans for what you are going to do for the event?

I have my costume at the ready although I still need a few accessories. I'm thinking outside the box this year because I'm not really into princessy stuff. I'll be active on social media for the day as I'll be on my own so won't be able to go out.

If you had 3 wishes what would they be?

For me and my spoonie chums to get well.
A cure for ME.
To be happy.

NB: Sian pointed out that most princesses would probably wish for something very similar so I'd like to add that I'd like to win the euromillions so that I can build 'Spoonie Mansions' - a respite home for chronically ill folk comprising of a main communal building, individual chalet living quarters for privacy and quiet, personal butlers, and golf buggies for transportation around the complex.

Which Disney Princess do you most relate to?

I'm not really into Disney and relate much more to badass swashbuckling princesses. If I had to choose a Disney princess, I'd go for Jasmine from Aladdin because she sneaks out of the palace dressed as a commoner so she can have adventures.  

You'll have to wait until 12th May to find out which princess I'll be dressing as this year. I can't wait to get my princess on!