September: in review

banner

Traditionally I would expect September to feel like a refresh button – it’s the start of a new academic year (even if it’s a long time since I adhered to one) and the start of autumn – and yet this one has felt more like I hit fast forward. I’ve been very busy over the past month with all sorts of bits and pieces which has left me feeling somewhat exhausted but I’m hoping that the chaos has been worth it. Here’s my month in review.

health

September has seen me getting back into the pattern of my health admin routines – I had a medication review with my GP and have been getting back into weekly sessions with my therapist and osteopath after their summer breaks. I was beginning to feel the effects of a hectic August without support so it has felt good to come back to the people who know me and my conditions best and to move forward again.

I’m beginning to get a little impatient waiting to hear about my next appointment at the Royal Free but I know it’s going to take time. I did have a nightmare that I missed the letter and had to go back through the entire referral/funding bid/assessment process again, though, so I can’t say my subconscious is doing too well with taking things in its stride!

At the moment I’m working hard on figuring out how to organise and manage my health without being too rigid or too hard on myself. It’s tricky to get it right all the time, even though I really want to and try my best. As September comes to a close, I’m testing out a few things the Royal Free clinic suggested to me to help me manage things better and hope they may help whilst I’m sitting on the waiting list.

work

This month I’ve had the joy of working on various different projects and events which has been really good fun. I’ve officially started as a programme facilitator with Future First and have absolutely loved getting out and about in Essex and Kent, leading workshops with year 12 students and corporate volunteers about networking and employability.

In early September I joined the lovely social enterprise Sisterhood, who use creative workshops to boost girls’ self confidence, for a one off event. I stepped in to help with the smooth running of an evening celebrating the achievements and project created by a brilliant group of students from School 21. The event involved a panel discussion, a “confidence catwalk” and several creative workshops. You can read more about the girls’ work here.

Continuing the creative theme of my month, on Saturday 15th I was at Hidden River Festival, running drop in zine making and gathering contributions from the community for the official Hidden River Festival Zine, which I am working on now – ready to be unveiled at the after party in October. We absolutely lucked out with beautiful sunshine and I so enjoyed chatting with engaged community members, sharing zine making joy and working with some super cute little ones who wanted to draw me pictures for the zine.

To round off my month, I secured a new part time contract taking me to at least the end of March which I’m incredibly excited about! I’m thrilled to be joining the health influencing team at Rethink Mental Illness, where I will be working on co-production, supporting young people to have their voices heard through commissioning and training. I cannot wait to start!

life

I started September with a trip to sunny Wales to visit my grandparents, which was a much needed breath of fresh air. It’s so good to get out of London sometimes and away from the day to day. My sister and I spent the weekend treating our grandparents and digitising their extensive photo collection to make sure we have every photo and know who is in them. It was so much fun listening to the stories behind the images.

I’ve also spent a good chunk of this month with Ministry of Stories, completing a CPD course on facilitating creative writing and story making workshops with young people. It has been really interesting to meet other practitioners and to share ideas. I’m looking forward to putting some of it to practice in a top secret project launching in 2019. Watch this space!

And that is my month in a nutshell. It looks like I have a busy October ahead so I’m hoping that a restful end to the month will prepare me for what’s coming next.

August: in review

August Banner

Well, I don’t know about you but for me August has felt like an incredibly long month. The heady heights of the summer heatwave feel like a lifetime ago now, especially with the grey skies and rain we’ve seen in recent days. It has certainly been an intense month for me, which is probably where this feeling is coming from, but all the same it has been a month with a lot of promise. Here’s my August in review.

health

August is probably the month where I’ve tested and pushed my body the most since way back in February and, if we set aside the huge amounts of rest and sacrifice to get myself through, I’m happy to say it passed. I’ll leave the explanation of what I was up to for the work section of the blog but it’s safe to say my body has served me better than I had imagined it might through an intensive contract. I’m feeling the strain a little now, though, so am giving myself some much needed down time before throwing myself into new projects.

This month also saw me take to the airwaves to discuss the impact of M.E, aiming to raise awareness as part of BBC Radio London’s focus on invisible disabilities. The drive time show dedicated an hour to M.E on 23rd August and Action for M.E kindly asked me to represent them alongside two young people, their parents and the charity’s Head of Youth Services. If you’re interested in giving the interview a listen you can find it here. The segment on M.E is from the top of the show and I come in at around 36 minutes.

If I’m honest, I had mixed feelings about the experience. It felt to me like the hour could have been better prepared for and given more of a focus around what needs to change to improve the lives of those with M.E. Instead, it felt a little directionless and I personally felt that the approach to me lacked sensitivity, leading me to spend the interview feeling like I was defending myself instead of being empowered to openly call for change and express how living with chronic illness has affected my life. That said, I’ve received some lovely feedback about the interview, so I do hope that what I did manage to say has made a difference, but it has certainly got me thinking too. What can I do to make sure that conversations around invisible illness are productive and positive? In particular, how is it possible to break down the idea that if you look well you are well? (If you listen, you’ll see why that question in particular has weighed on my mind.) It was an interesting experience and one I would take on again but perhaps with a little more determination to shape the narrative in a way that felt more comfortable and meaningful.

work

I spent the first three weeks of August working with FutureVersity as a programme tutor, supporting young people aged 14-16 through an intense series of challenges and workshops for their Vacation Education project. I absolutely loved the experience, watching and supporting young people to grow and develop significantly over even a short amount of time. The programme was designed to both support young people to gain new skills for the future and also to remain in a learning mindset so that they could return to school in September ready to get back into their studies from day one. Reading young people’s feedback and seeing how they had benefited reminded me why I love youth work so much and made the toll the work took on my body worth it.

I also had the absolute joy of spending the afternoon at Redmond Community Centre last week, running a drop in zine making workshop ahead of Hidden River Festival next month. It was so lovely to have the chance to share the ‘how to’ of making mini zines and it has made me so excited for the day itself. I’ll be co-producing a festival zine with the local community, as well as running the same drop in style workshop so that festival attendees can make their own mini zines to take away.

As the end of the month has approached, I’ve been looking ahead to plan my autumn schedule. My calendar is slowly filling up with workshops and projects but I still have space for new work and clients, so if you or anyone you know is looking for freelance support, do get in touch!

life

Now, you might have guessed that this section of the blog was going to be pretty sparse this month. All work means no play and makes Lucy a very dull woman. Chronic illness management is not the most fun of tasks.

That said, I’m delighted to have a new piece published by Dear Damsels today as the final story for their August letter, on the theme of “youth”. As soon as I saw the theme I knew exactly what I wanted to write. Over the years I’ve spent so much time sitting with “what if’s” about how my teenage years turned out – what would my life look like if my mum hadn’t died/I hadn’t developed M.E? I wanted to explore the what ifs and consider whether a “normal” youth would have been better – would I want to trade everything in? At the time of writing, I don’t have the direct link to the piece but you can rest assured it’ll be plastered all over my social media if you want to give it a read.

So, that’s it for August and I’m off to start September with a trip to Wales to see my grandparents. See you next month.

July: in review

July Header.png

You might be able to tell by the post date that the end of July passed me by in a whirlwind. It has been an incredibly busy month all in all, mostly populated by work (and the requisite rest spells to balance things out). I can’t quite believe it’s August already and it feels a little like this second half of the year is running away but I suppose if time is flying that must mean I’m having fun? Here’s my round up of July.

health

July saw me back at the Royal Free for a fibromyalgia assessment. The hospital have been doing an audit of fibro diagnoses to check whether they think they’re accurate, using a fresh set of diagnostic criteria. Considering my diagnosis was made just a few weeks before the appointment at the very same hospital I didn’t feel too stressed about it, though.

After going through the criteria it was confirmed that fibro should definitely sit alongside my M.E diagnosis. The appointment was probably the first time I’ve had anyone take the time to sit down and really explain what is happening in my body. He explained the way my body works differently to other people’s whilst also remaining frank about the fact that there is so much they don’t know and that the support they can give is for management – not a cure. It was so clear and comprehensive that it gave me a great deal of reassurance and I have a slightly better idea of how to approach things now. The next step is to wait for my first proper appointment with the clinic but it seems unlikely that will be happening for a few months yet.

I was surprised, however, to find that the appointment came with a tinge of disappointment and frustration. Not for my current self – I finally feel like I’m getting the support I need – but for my younger self instead. I found myself angry that no such appointment had been made available when I was at my lowest point as a teenager. I was given no information or support back then and ended up spending more days than I would like to remember thinking over how maybe it would be better simply not to exist anymore. I sat in that appointment wondering how differently I might have felt about my body and how that might have led to a better quality of life over all of these years. I also felt frustrated that it had taken thirteen years since my initial diagnosis to get to the point where anyone has noticed that I have more than one condition. So much makes sense to me now that hadn’t done before. I have often worried that once you have an M.E diagnosis doctors stop listening and looking for anything else, instead just attributing everything to that condition and it niggled at me that maybe I was right. There are too many people like me living through these experiences and I wish there was a way to ensure that no one else has to wait so long or live through so much before they get help.

It was hard to let go of the idea of what could have been different if this had all happened sooner but I’m trying to focus on the fact that at least it has all happened now. I’m cautiously optimistic about working my way towards better health.

work

The bulk of my working month has been spent with the brilliant education charity FutureVersity, who I joined in July as a Programme Tutor and Consultant for their Vacation Education programme in Tower Hamlets. I spent several weeks working behind the scenes to help with preparation for the programme, amending and developing resources and attending tutor training. This week the programme launched and it has been totally exhausting but wonderful. I’m working as a tutor with a group of 14-16 year olds who will be completing activities and team challenges over 3 weeks, with the aim of increasing skills and confidence whilst keeping them engaged and in a learning mindset over the summer. Alongside this, I’ve also been thrilled to join Future First‘s pool of Freelance Facilitators to deliver their workshops in schools and spent a hot and sunny day with Brook doing outreach work in Lewisham.

Finally, this month marked one year since I went freelance which I still can’t quite believe. I wrote a blog to mark the occasion, which you can read here.

life

My work/life balance hasn’t been all too even over the last month but I did manage to squeeze in a couple of brilliant arts experiences.

First, I went to see The Jungle which has moved from the Young Vic to the West End. It was an incredible piece of theatre about the stories and experiences of refugees in Calais. From the set, which places you in the middle of the action, to the outstanding performances of the cast it’s a masterclass in effective storytelling and using the arts to inspire action. The work of the charity Help Refugees is promoted around the theatre and at the end of the show, so that the audience aren’t only moved by the stories but can act to change the future. I would love to see more of this sort of production.

Secondly, was PROCESS! Fest, a zine festival hosted at Somerset House and curated by OOMK zine. The event offered workshops, a zine fair, a pop up zine library, talks and a communal table to share zines. I took along two of my zines to add to the pile, bought a rather large collection of zines and attended a talk on using print publications in activism (a personal area of increasing interest). I found the event thoroughly enjoyable and it definitely helped to energise me in my own zine making (as well as increasing my TBR pile).

My own creative work has been quiet this month so I was glad to have the chance to take inspiration and motivation from others. Let’s see what August holds.

My First Year as a Freelancer

freelance header

It was precisely one year ago to the day that I launched this website and my business. At the time I didn’t know what to expect from freelancing – it had taken me a lot of time turning over the idea of taking the plunge before I got to that point. Would I find enough of the right work? Would the lifestyle suit me? Would I miss the consistency of the same team, the same days and hours, the same role? I was entering a world with a lot of uncertainty but also a lot of hope. One year into the gamble, I’m so glad I made the leap – this year has been a real learning curve and I’ve been so fortunate to work with some incredible charities and social enterprises along the way.

To mark the occasion, I thought I would write a little something about what I have loved most and what I’ve learned in my first year as my own boss.

Flexibility

I think this is probably one of the most notable bonuses of freelance life – getting to pick your own schedule and make your hours work for you. I have really enjoyed the ability to work from home more and break out of the 35 hour a week 9-5. On both a personal level – where it has allowed me more freedom to focus on writing and creativity – and from the perspective of my health, this has benefited me a lot. Given I probably spend the equivalent of one working day a week on health admin with my various appointments, it has been a blessing to be able to organise my time more freely.

At first, I thought of the freelance lifestyle being a short term option, something to suit my current circumstance, but now I’m not so sure I could turn back. I feel so much more relaxed, in spite of the lack of certainty month to month, and really enjoy working alongside so many brilliant people in the charity sector, which brings me to my next point.

Variety

I have always been someone who has craved variety in their work – I’ve been fortunate to work in organisations that have allowed me to explore wide ranging projects within one role. I think freelancing takes that to the next level, working on varied projects with several organisations at once keeps me on my toes, gives me lots to think about and challenges me intellectually and creatively. I also find working on discrete projects really rewarding – I like going in with a set timeframe and goals to aim for.

The way I’ve been working has also allowed me to meet so many fascinating people – from people I have worked alongside to volunteers I’ve trained and young people. I had been worried that freelance life could be quite isolating but I feel like I’ve managed to find a good balance between time spent working alone and time spent working with others.

Focus

Another of the benefits of working with several organisations in different roles is that it has really helped me to home in on what I most want to do and really begin to focus my approach and my business.

My passion for designing, developing and leading workshops and programmes has really come to the fore and I’ve been loving focusing more energy on working in this space. I’m so happy to be a facilitator for both Brook and Future First’s programmes in schools and can’t wait to spend my summer with FutureVersity as a Programme Tutor and Consultant in Tower Hamlets. Working with young people has always been my passion and I feel so energised to be doing what I love with so many amazing organisations.

Here’s to year two…

June: in review

june banner

This has been the best month I’ve had in 2018 so far and, in all honesty, I’m quite sad that my birthday season is rolling away for another year. Between my birthday, a city break, a positive consultant appointment and general life goodness this month has felt like a great leap forward from where I was when this year started. I loved a lot of my 28th year but it already feels like 29 could be a game changer. Here’s a round up of my month.

health

Anyone who follows my blog will know that this month held a long awaited consultancy appointment with the fatigue service at the Royal Free. I had approached the appointment with trepidation; I hate the name “fatigue service” as it feels like it diminishes my experience; I made the mistake of googling my consultant (trust me, never do this); I knew the clinic’s main approach is the GET/CBT methodology recommended by the widely criticised PACE trial. I get anxious in hospitals as it is so sitting in the corridor waiting to be called I was an absolute bag of nerves. After the appointment, however, I texted my best friends: I have to take it all back. She’s actually a bit of a legend.

It was probably the most thorough appointment I’ve ever had with a consultant. I felt fully listened to, understood and respected. She got where I was coming from, she empathised and, best of all, she had ideas. Next steps include an appointment to explore the extent to which fibromyalgia is affecting me (ah yes – I also picked up an additional diagnosis) and then moving forward to try to reduce my pain (and thus my need for buckets of medication). I left the appointment feeling so hopeful. I can’t promise to cure you, she said. Science isn’t there yet, but we can do our best to improve your symptoms. I have all my fingers and toes crossed that she’s right.

June has felt like a good month overall too, with my body feeling significantly more resilient and able to keep up with a higher pace of life than I’ve managed in a while. It feels like the upward curve is continuing…  I’d probably best go touch wood again, hey?

work

This month has been quiet work wise, especially with my break, but did include a brilliant day of induction training with Brook for my new position with them as an Education and Wellbeing Specialist. I’m really looking forward to getting started with events and workshops in the coming weeks.

I’ve also been using my down time to get out and meet with organisations to discuss possible collaborations. If you or your organisation would benefit from support with volunteer management, youth engagement or facilitation do give me a shout.

life

The month kicked off with my birthday which I thoroughly enjoyed with friends and family. I always find birthdays send me into a slight existential spiral in the preceding week but on the day itself that tends to transition into a hopeful feeling. I’ve made myself a little list of things I want to do this year before the big 3-0 in 2019, set some intentions and so far things are looking bright.

The week after my birthday I went away for my annual solo city break. I know it’s not for everyone but travelling alone is one of the greatest acts of self-care I can practice. I love taking the time out of the day to day, giving myself some space and taking time to reflect. This year took me to Amsterdam and I really enjoyed wandering the canals, taking writing breaks in cafes, vintage shopping and soaking up some of the culture.

I came back from my trip with a fresh energy and a real feeling of momentum. It has been good to come back with focus and I’m certain I can make the second half of this year even better than the first.

See you next month.

May: in review

May banner.png

Here we are again – the end of another month. The end of May tends to bring out a sense of existential dread in me, as an early June baby – another year ticked off and a new age to remember. In fairness, though, at least I can look back at 28 as a pretty successful and transformative year.

As for May, it has felt both lengthy and short but certainly full of life. Here’s my monthly round up

health

All in all, May has been a very good month (touching wood seemed to work last time, so I’m going to type this one handed with the other palm flat on the table). I’ve been able to do more and my body has been much quicker to bounce back from bad days. I’m beginning to feel a little more lively and a lot more resilient which is great, although it does make the hard days feel harder in a way. I need to remember to stay mindful of pacing and resting as I go forward but I have my fingers crossed that this is the start of a steady upward curve.

This month was heavy on the health awareness weeks for me, as you can see reflected on the blog with my posts for M.E Awareness Week and Mental Health Awareness Week. I’m not sure who chose to put them back to back – it was a big fortnight for baring my soul – but I hope that anyone who read my posts, alongside all the pieces I shared on my social media feeds, found them helpful or, at the very least, interesting!

Next month I finally have my M.E clinic appointment, after a year of pushing and persisting to get there. I’m seeing a consultant who follows guidance heavily critiqued by many patients and other specialists so I’m interested, if increasingly anxious, to see what the appointment holds.

work

This month brought my time with The Mix to an end after a brilliant 8 months. It was a mixed month of volunteer recruitment and training, finishing with a Saturday working with new volunteers in Nottingham. As one contract ends, however, another begins – I’m looking forward to joining Brook, the young people’s sexual health charity, as a Freelance Education and Wellbeing Specialist soon, supporting them to deliver their work in schools.

I also worked with Volume 48 this month on a brilliant event with over 100 employees from Cisco. The event aimed to raise awareness and understanding of hidden conditions – from mental health to sight impairment. Participants were guided through several interactive sessions to simulate different conditions and get people thinking and talking. As it was Mental Health Awareness Week, I also ran a mini listening skills masterclass.

Processed with MOLDIV

I am now open to new opportunities and would love to hear from anyone who is interested in receiving facilitation or consultancy support.

life

I was thrilled to be recognised by Action for M.E as a ‘Fundraiser of the Week’ during May, as a result of my awareness raising zines. It’s so nice to get positive feedback from others living with M.E and to feel like what I’m doing is really making a difference, even if only in a small way.

img_1720-e1527609947496.png

Finally, I’ve actually felt well enough this month to just live my life and that has felt so good – meeting with friends, going to parties, watching the royal wedding with a gin or two… it has felt nice to be able to let go a little and just be me. Long may it continue.

On improving mental health support

MHAW header

My first mental health diagnosis is by far the most comfortable for people to engage with. It made sense – I was diagnosed with depression during a year which has since received responses such as “oh God!”, “bloody hell!” and “that’s awful!” from friends and acquaintances. People still don’t know what to say to me if I explain it but they do at least understand why I might have struggled at that time.

You see, in the space of one year I went from having an achingly ordinary childhood to being a grief-stricken, housebound teenager. The longer version includes a particularly bad case of glandular fever, coupled with a 9 month long chest infection, but that’s all prologue. The real story begins in December 2004 with the sudden death of my Mum. What we all thought was a migraine, something she had struggled with her whole life, turned out to be a brain haemorrhage. The pain started on Sunday, she was rushed to hospital on Tuesday and gone by Thursday. (One of the coping mechanisms I’ve developed over the years is a rather dark sense of humour, so please note how hard I’m having to try not to make a Craig David joke right now).

It was the worst week of my life by far and just a month later I began complaining of worsening health – like my initial glandular fever symptoms, I wrote in my diary at the time, except ten times worse. I somehow struggled through the rest of the school year but only two weeks into the following autumn term my body crashed. I had been diagnosed with M.E that spring, told there was nothing to be done, and sent on my way. All of a sudden I could barely walk, struggled to talk, think, move. Some people describe M.E as a living death and that was truly what it felt like. I was sixteen years old and my entire life became about grieving my health, my dreams and my mum. My world reduced to four walls.

My dad was the one who noticed that something was badly wrong, that I was in a darker place than I should have been, even with everything that had happened. He was the one who insisted on going to the GP, who insisted they had to help me. I accessed child and adolescent mental health services a short while afterwards, where they prescribed anti-depressants (which I have been on for 8 of the last 12 years) and insisted I come in for weekly counselling. I hadn’t dealt with my grief and I needed support to work my way through it, they said. I went every week for a year and alongside my medication began to emerge as myself again. It’s a nice, neat mental health story, really. There’s a logical cause, there was a solution, a happy ending. As I said, it makes sense.

It’s much more difficult to discuss the two further diagnoses I went on to receive at 22 and 27. Harder to pinpoint the start, harder to explain the why, the path back to a healthier mind more murky than it was the first time with no traumatic series of events to dissect. I’m not sure many people know how much more likely you are to relapse after that first diagnosis – I didn’t until I had some mental health awareness training a long time after my first two experiences. As it happens, you run a 50% risk of a second depressive episode after your first diagnosis, and if you fall into the unlucky half, your risk of a third rises to 70%. So, my mental health story is difficult but in no way improbable.

Now, if you’re reading this I’m sure you know it’s Mental Health Awareness Week and I’m sure you’re seeing a lot of posts saying how we all need to talk more, but that’s not the post I’m writing. I fully believe that breaking down stigma and raising awareness is vital – that for too many people having those conversations and being open are a huge problem. That too many people don’t know how to hear and respond to these conversations if someone does open up. Believe me, I’ve experienced it. The thing is that this isn’t the only problem in the mental health arena, and we need to stop letting our discomfort with difficult conversations keep eating up all of the headlines. We need to stop only focusing on the first step to recovery, as though there aren’t so many after. What is the use in asking for help if there’s no practical help to be offered? The most consistent part of every one of my diagnoses was that recognising and articulating the problem were a small part of the picture – there were always next steps that led me to a resolution.

I actually count myself lucky for getting a diagnosis so young and for having such a clear cut case that left my doctors in no doubt over their course of action. I have no doubt that it has improved my access to care and support ever since – it has enabled me to walk into a GP’s office and be taken seriously when I talk about mental health because they know I’ve been there before. They know the medication that works for me, that I can be trusted with it. I imagine it’s far more difficult to go in for the first time as an adult, to go in without the obvious narrative, to have to explain what often feels entirely inexplicable.

I was also extremely fortunate that when I accessed CAMHS I didn’t have a long wait to access support and that I didn’t have to be at crisis point to be offered help. If I was in the same situation today I would not have been so lucky and I honestly believe that a lengthy wait for an appointment could have had serious consequences. I wrote a piece on the CAMHS crisis for Marbles Magazine just last year and the situation today isn’t any better. Sadly the picture across mental health services as a whole is the same – there is too much demand and not enough support available.

In addition to all of this, I had no choice but to get comfortable with talking about my mental health. I spent about a year working through my issues on a weekly basis, coming up with coping strategies and reflecting on my mental state. It has certainly made it easier for me as an adult, where I immediately turned to talk therapy for help at 27 I don’t know many people my age who would have done so as easily. The thing is, that shouldn’t be the case – you shouldn’t have to go through hell to have simple mental health literacy.

I am incredibly passionate about mental health awareness and support and would love to hear other people’s thoughts on what needs to change to really improve the picture. For me, the top three things I would love to see would be:

1) A focus on campaigning for better funding and improved mental health services – balancing out the narrative that we need to talk.

2) Mental health and wellbeing becoming core elements of the curriculum so that young people at all ages acquire the language to explain how they feel and the tools and understanding to look after their mental health. We need to move beyond a sole focus on crisis management and prioritise prevention too.

3) The media being held to higher standards in how they report on mental health – accepting their role in promoting negative stigma and actively seeking to do better, listening to mental health charities who offer guidance on mindful, safe reporting.

On living with M.E

chronic illness

The trouble with having an illness with so many misconceptions attached and so little understood is that it becomes almost impossible to mention. How do you explain your condition when you can’t say why it occurs or what it is? How can you be sure that the person listening will empathise and won’t already have the stigmatised narrative in their head? You can try to explain the science you know, the snippets of promising research that seem to indicate that you and your fellow patients were right all along – that you are really ill – but that all depends on your memory and mind working with you on that day and, even then, it’s likely whoever is listening wasn’t expecting (or looking for) the lecture it will end up being. I don’t know if I have ever been able to pull together a coherent explanation that wouldn’t sound more ridiculous than real. At the moment research has only pulled together a few loose threads for us to work with, we’re yet to find enough to weave a tapestry. My condition – M.E – remains a mystery.

One of the greatest stumbling blocks M.E patients face is the perception that it’s all in our heads – many doctors and scientists find it more comfortable to accept that idea over the possibility that there’s an illness they haven’t mastered or understood yet. Many in the medical profession, despite clear evidence now to the contrary and its definition as a neurological condition by the World Health Organisation, believe it is psychological, not physical, and so this discourse has dominated the wider consciousness as well. Never mind the countless stories of enormous suffering relayed by patients – their pride comes before our dignity.

At my worst, I had to drop out of school, left virtually housebound, in what would come to be one of the worst years of my life. I had blinding headaches that would last for weeks at a time and that no painkillers could touch. I experienced constant nausea for a year and a half, which made it almost impossible to eat. I battled with insomnia, as though hours spent alone in daylight weren’t already bad enough. I had pain in my legs so intense that often it would wake me if I did fall asleep and that left me so I could barely walk. I would have episodes where my eyesight would black out and I would need to lie on the floor wherever I was, as I would lose control of my limbs. My memory dissolved, and my concentration with it, and often I would struggle to talk or process what people were saying. On my very worst days I would become sensitive to sound, light and touch, so easily overwhelmed that the slightest thing would reduce me to tears and panic. I like to think I have a good imagination, but I’m not sure it ever could have conjured this.

When I received my diagnosis at the age of fifteen, my doctor put it on my records as ‘post viral fatigue syndrome’ and told me to avoid ever having the term M.E put in my notes, even though it was the same condition, because there was ‘too much stigma attached’. At least with post viral fatigue there was a suggested cause and therefore the idea that recovery was possible, she said. From the off I was told that my condition was something to hide.

After that I was told there was nothing to be done – only some vague attempts at symptom management but none of the medications worked. We were left to try to find answers on our own. I’m one of the lucky ones – I managed to claw my way back to good health for several years, although I’ve returned to rocky terrain more recently, with a flare in my condition. Now, thirteen years after diagnosis I have finally been referred beyond my GP, seeing a neurologist this spring and now with a date for an appointment with a ‘specialist’. The trouble is I don’t find much hope in it; the clinic I’m going to follows protocol which has been criticised by both professionals and patients as either ineffective or damaging and yet this is the best the NHS will be able to offer me or any of the 250,000 people in the UK living with M.E. It just isn’t good enough. Around the world the situation isn’t much better – millions of us are missing from our lives, unable to live fully or at all, with little to no support or understanding from those who are supposed to help us.

This week marks M.E Awareness Week and across the globe gentle protests will be taking place on 12th May. If my story has moved you at all to do so, please follow and share content on this day using the hashtag #MillionsMissing. You can find out more about the condition here and I would also urge you to watch the incredible documentary Unrest, which is available to stream on Netflix. Not only does it offer insight into some of the most severe cases of M.E, it also explains the history and science of the illness and why it has become so controversial far more eloquently than I could ever attempt to do. Finally, if you would like to make a difference closer to home, please consider buying one of my handmade zines about life with M.E – a portion of the proceeds from each sale will go to the charity Action for M.E, whose services have helped me to cope throughout my journey and which advocates for patients across the UK.

April: in review

april

It hardly seems like a week has passed since I wrote my last monthly review and yet, once again, here we are. It’s been quite a month, with a much longed for dose of  warmth and sunshine and a lot of happy new memories made.

Here are my highlights.

health

I’m reluctant to follow in February’s footsteps and jinx myself again, but I have to say… this has been a good month. (BRB – just need to go touch every piece of wooden furniture in my flat.)

It’s hard to express exactly what it feels like to have a good spell, especially after so much struggling, and also because my good is really just most people’s normal. How do you describe the glorious sensation of having energy and zero pain when that’s how things should be? For me, right now, the opportunity just to be normal is extraordinary. Having a good day feels like coming up for air, it’s like waking up from a bad dream and realising the world feels right again.

A good day (which is usually more like a good series of hours, but who’s counting?) means reconnecting with yourself. My condition so often steals moments from me and this month I stole some back. When my symptoms are raging, I feel so weak and so powerless but when they lift it’s like everything feels possible again. I can think clearer and imagine what it might be like to have my power back for longer – to do what I want, to be who I want, without the fear of repercussions.

One week I managed to be active in some way every single day, I managed to work, to socialise, to get out of London and by the end of the seventh day I still felt OK! Admittedly, this was swiftly followed by a two day crash – curled in bed with cool packs and painkillers – but it was worth it. I think sometimes it’s just knowing that good days are possible that makes the difference.

work

As April draws to a close, I am now entering my final month at The Mix. It has been a quieter month, focused on volunteer recruitment rather than training, so I’m looking forward to meeting and working with new volunteers in the coming weeks.

I’m currently lining up my work schedule for the summer months and will be available for work from the end of May, so do keep me in mind for any projects you may have, whether that’s writing, facilitation or consultancy.

life

As I said, life has been good to me this month, with a lot of plans and quality time with friends. I’ve also been continuing the creative theme that seems to be at the heart of my year, first of all by hitting the 20,000 word mark for my novel which was an exciting milestone to reach and secondly by using my rest periods to design some brand new zines, ahead of two very important awareness weeks coming up in May.

M.E Awareness Week (7th-13th May)

IMG_1381

Inspired by a question from a near stranger after I had briefly explained my M.E, I created this zine with input from other people living with the condition.

The bulk of the zine focuses on some of the most common things people say that upset or frustrate people with M.E (and why that’s the case), alongside a little information on my story, facts about M.E and a list of phrases to adopt instead.

The zine is available to buy on my shop for £3, with £1 from every sale going to Action for M.E

Mental Health Awareness Week (14th-20th May)

img_1367.jpg

This mini zine briefly touches on my experience of depression, as well as offering information on how to seek and/or offer help.

I’m selling the zine on the shop with 50% from each sale going to Mind. Buy one for £1 or get a pack of ten at a steal for £5 – perfect to share with friends, family, colleagues or anyone you please.

And that’s it! If you need me, I’m off to cross every finger and toe that May proves to be just as full of joy, creativity and energy as April.

March: in review

March

I’m writing this post at 5:30pm and… guess what? It’s still light out! After a March characterised by cold snaps it’s a relief to feel like spring is finally on its way. Here’s a very brief round up of a rather quiet month.

health

One thing I’ve learned this month is never ever write that you’re having a good patch with your health and then post it on the internet. Your body will KNOW and it will punish you.

March has been difficult but I have consoled myself with the fact that the absurd weather is probably primarily to blame. Extreme temperatures are renowned for setting off symptoms, so I’ve found myself spending a lot more time in bed with my pain meds, rewatching Grey’s Anatomy and talking to the television (“don’t take Alex’s place on the plane, Arizona!”; “tell him you love him now – you’ll be dead soon!”)

On the plus side, I finally got a date in the diary for my appointment for the M.E clinic at the Royal Free…. but more on that in June. 

work

March has seen me picking up some new training at The Mix, working on their online classroom to run training for Digital Connectors, who volunteer remotely to respond to web chats from young people, offering emotional support and helping them to figure out the best next steps. I’ve also been working with a new cohort of Helpline trainees which has been a lot of fun – this course seems to have flown by with the final session running this weekend.

I’m now starting to think about what comes next, as I’m sure the end of my contract in May will be here before I know it. As always, if you or anyone you know has any upcoming projects and could use freelance support do get in touch!

life

Enforced rest has (Grey’s Anatomy aside) meant that I’ve had quite a lot of time on my hands to work on creative projects. I’ve been spending a lot of time experimenting with illustration, something I want to explore further when my health improves.

I’ve also had a fresh burst of energy with my novel, thanks to my amazing writing friends and community. After weeks of feeling stuck, I now know exactly where I’m going with the next part and have been so enjoying taking my story forward. I’m determined to try to keep my one resolution to finish the first draft this year and I’m pretty sure I can manage it if I keep up the pace. It’s such a good feeling to be enjoying the process again.

Slowly but surely, I’m feeling brighter and I’m hopeful for what April has to bring.