…soft lamp light, an abundance of throws, tea sipped at just the right temperature, scribbling on a crisp, clean page, crossing off items on my to-do list, the crinkle of a packet followed by a duet of wheeks, the light glinting off a freshly-polished table, sunlight streaming through the window in the early hours
I always see a meme doing the rounds on social media that says something like ‘I’m not an early bird or an night owl, I’m some form of permanently exhausted pigeon.’ This is probably one of those memes everyone can relate to to some extent. But honestly, I cannot emphasise how much this resembles my life at the moment.
In September I landed myself a new job. This was a huge deal for me: after months of drowning in job applications, keen to avoid landing a job in the education sector, I found something I could really get my teeth into. The only catch? It was full-time. And getting my body used to the rigours of full-time work would be perhaps the greatest challenge of all.
Fatigue is a real sucker. Unless you’ve experienced it, it’s incredibly hard to understand. I am one of these people who can sleep for 12 hours or more and still nap for several hours during the day. And no matter what, I am always tired.
It’s generally acknowledged by the medical community that individuals with cerebral palsy use between 3 to 5 times more energy carrying out daily tasks than those without. On an average day, I walk a good 25 minutes during my daily commute. I also make sure to take regular breaks at work, and will frequently get up and go for a little walk around the office when I can. By the time I’ve come home from work and done the usual bits and bobs around the house, I am wiped. Sometimes, I will push through and make a meal from scratch. Other days, I’ll bung something convenient into the oven, or Ben or my family will cook something for me. By 8 o’clock, I am considering getting into bed. I feel bad about this though, so I’ll usually give it til half ten and then consider going about my daily bedtime routine before finally settling down.
Once I am in bed, I tend to do a little bit of reading, before falling asleep ungracefully, probably with my mouth wide open, snoring for all the world to hear.
Next morning, my alarm goes off at 6.45 and the routine begins again.
I’ve had to have a serious talk with myself regarding reserving my energy and managing my pain. I am awful and stubborn when it comes to admitting I can’t take on the world, but living permanently exhausted is just not cutting it any more.
Pacing is something I genuinely want to work on. I need to banish those guilty thoughts and accept that I am not a superhuman. I need to schedule in early nights, make sure I eat good meals and regularly snack on healthy things during the day to keep me going. Most importantly, I need to work on accepting that this is something I can and will work on.
I am enjoying my job. It is the right thing for me right now. Working in an office means I can sit comfortably with a hot water bottle on my aching back, endless cups of tea, with a view of the city around me. I enjoy the satisfaction of seeing a project come together, matters complete and people satisfied and thankful when it’s all over. I enjoy working with people based all over the world and I am lucky to have very supportive, lovely colleagues who put up with my endless yawning and stretching at my desk. I just need to remember give my body and mind the attention it deserves at all times.
I write this whilst snuggling under my heated blanket. My spine has got it in for me today and I haven’t done anything particularly spectacular. But that’s okay. Because right now, this permanently exhausted pigeon is all that matters, and I am going to make sure I spend more of my time with that in mind.
It’s something we all have. Yet none of us seem to want to talk about it.
‘The Girl Who Took a Rocket to the Moon & Other Stories’ is a book, aimed at adults and children alike, that attempts to break down the stigma surrounding mental health, creating a conversation within which individuals can discuss their own issues with others.
Jenny Eckloff, who wrote the book after seeing a loved one struggle with their own mental health, has written seven short stories that encompass all aspects of mental health. From tackling anxiety, to depression, to panic attacks, Jenny’s book – illustrated by the talented Sammie Ripley – showcases stories that are relatable, yet often poignant.
Though it capture the multi-faceted nature of the human emotional experience, the book is very accessible. The stories are short enough to be read easily, and would make a great bedtime story for little ones. They address panic attacks, depression and anxiety in an open, non-judgemental way, allowing the characters to overcome their difficulties and with the understanding that it is okay to talk.
A particular favourite of mine – ‘The Fallen Star’ – addresses the difficulties individuals have in seeking help, and encourages others to be there when individuals do reach out:
‘…maybe sometimes, stars need to fall and even though he couldn’t fix it, he just needed to be for it when it did…it takes great strength to ask for help…and it takes equal amounts to fix yourself.’
As someone who made that very first step in addressing my own mental health, these words were particularly resonating. It is hard to seek help, and even harder to actually help yourself. The glossary at the back of the book is a wonderful, concise resource that can be used explaining anxiety, panic attacks, depression and more whilst reading the stories.
Reading Jenny’s book – alongside Sammie’s whimsical illustrations – is a really lovely, affirming experience, and would make a wonderful gift to those struggling with their own mental health, or the mental health of their loved ones.
Thanks so much to Jenny for letting me review your book: it truly is wonderful, and I hope you continue to break the stigma and taboo of mental health one story at a time.
You can follow Jenny on twitter @Reckless_Winter, see her website at http://www.jennyeckloff.com .
You can also look at more of Sammie’s wonderful illustrations over at: https://www.instagram.com/samsillustration/
Well hello, you. I know, I know. It’s been a while, hasn’t it?! I’d say I have a perfectly reasonable excuse, but all I can really say is that old little thing called ‘life’ got in the way.
I know. Lame excuse.
Anyhow, just thought I’d let you know about my most recent visit to the hospital. This is following on from my MSK clinic post, which addressed plans for pain management. I was pretty disappointed; my beloved acupuncture isn’t on offer where I am now, and so we decided on a physio/mental health plan.
The appointment finally came around. Though my physio was super lovely, I just felt…well…really underwhelmed. To address the pain the approach seems to encompass a plan for exercise and keeping a record of how this affects pain and/or fatigue, but I am already really mobile considering. I walk a hell of a lot (that’s what not driving does for you), go swimming and gymming when possible, and at least once a week, and keep active even on my ‘rest days’ as my boyfriend would tell you. I literally do not stop. I am always on the go. And whilst I know some people with pain and musculoskeletal conditions can’t be as active as I am, it just seemed to be an assumption that I don’t do anything, and so need to increase my activity levels. I was given a few exercises to try and have given things a go, but all in all I just don’t feel like it’s been very helpful. I still have pain even after trying these things, I still could sleep for days, and I’m still fed up of being told thay exercise is the cure-all even though I do exercise, and lo and behold, I still have cerebral palsy and severe kyphosis.
I am really grateful I got an appointment, and know I am privileged to do so. But I just can’t help thinking this approach is missing the point entirely. Maybe I’m still bitter about not having the acupuncture, but I just don’t feel this is pain management. Right now I miss Hull more than ever.
So, that’s my little ranty update for you. I have a follow up appointment and will mention my concerns. As always, I’ll keep you updated. It’s been quiet on here I know, but thanks for sticking with me whilst I find my feet. I should be back to posting weekly very, very soon
Right, better get back to doing the washing…
…snuggling up in front of the fire, guinea pigs splashing around in a bubble bath, hot steamy showers, the wave of pain relief washing over me, making plans and chasing dreams, wrapping up in a toasty blanket, rain running down the window pane, sleepy smiles, cloudy winter mornings
Yesterday felt like a big, anxiety-inducing, sad-making day.
I woke up early knowing I had to attend my MSK Clinic appointment with butterflies in my tummy and a raspy dry throat. Perhaps it seems a little over dramatic to feel this way, but I’d be lying if I said I wasn’t anxious.
Truth is, I had been waiting for this appointment for months, having had to be re-referred to a different service in a different part of the country since moving back after my university studies. This appointment would determine what kind of support I’d be entitled to back in my hometown, and having got used to the routine and effectiveness of treatment back in my university town, I was extremely anxious at the prospect of having no support at all, which seems like an exaggeration, I know.
You see, it is very much a postcode lottery when accessing healthcare.
As much as I love the NHS, I must say there really is a huge difference with regards to provisions and accessibility depending on where you are in the country. It’s all a bit touch and go with certain services, as each have different approaches. Back in East Yorkshire I’d been lucky enough to receive frequent acupuncture treatment, excellent mental health treatment through several talking therapies, and access to a neuro consultant, occupational therapy and physio. Though I’d seen a physio and neurologist a long time ago back home, I hadn’t ever seen an occupational therapist despite having cerebral palsy. I also hadn’t had frequent acupuncture, or had monitoring of my curvature since the age of sixteen. It made me anxious to think all the fantastic progress I had made in Hull could possibly be stripped away just because the services and provisions aren’t available here.
All of this explained the butterflies and raspy throat, I guess.
As I suspected, things have changed. Much to my disappointment, they don’t offer acupuncture here. This was a little hard to swallow (and accounts for my exclamation of ‘oh no!’ in the consulting room) and though I was offered facet joint injections back in East Yorkshire, I was told I probably won’t be able to have them over here for a few years owing to my age. I might also have to consider a spinal fusion in the future (eek!) so they’d want to reduce steroid exposure to a minimum.
Again, fairly disappointing.
It’s not all bad, though. I will be discussed at their monthly review -‘they’ being made up of doctors, spinal consultants, neurologists, nurses and pain management specialists – and it is likely I’ll be able to access support to help with the mental struggles of the cerebral palsy and scheuermann’s, which is really quite exciting considering this aspect has never been discussed. I’ll also have specialist physio, with therapists who know the condition, and will be able to advise me accordingly, a change from the ‘I’ve never actually seen scheuermann’s in a person before!’ physio I’ve had previously. So, I’m feeling a bit mixed-up about this one. I am seriously gutted I can’t have acupuncture, and will be looking into private treatment options.
However, I am feeling a glimmer of hope, and really feel that the mental health focus will help. It is also lovely to know I am not alone, so a big thank you to Ben for coming with me to my appointment. This is a start, and I have at least some direction, and I’ll just have to hang tight and see what’s in store.
I’ll get there, I’m sure.
Sending warm bear hugs on this chilly day…
Social media changed my life.
This is no exaggeration. There’s no other way to put it. Social media changed my life.
Most of us are well-acquainted with social media and all its forms. Many of us have a Facebook account, where according to the statistics provided by Facebook itself, there are 1.65 billion monthly users with an active Facebook profile (Facebook Newsroom, 2016). Twitter, though smaller, also has impressive user figures, with an average of 310 million active monthly users, and 1 billion unique visits monthly to sites with embedded Tweets (Twitter Company site, 2016). These figures pertaining to social media users are impressive, and are only set to grow as the number and variety of social media platforms increases. I know Facebook and Twitter often draw bad press with regards to ‘trolling’ or cyber-bullying incidents, but I want to share with you my positive experiences using social media, and why I think they really can be a force for good.
I got into Twitter when one of my friends set up my first ever twitter account. I was reluctant initially, but decided I had nothing to lose and so got stuck right in. Twitter seems to polarise its users: most people I know either love it or hate it, but after nearly six years of using that initial account, I can assure you I fall into the former camp, rather than the latter. Twitter – if you don’t already know – is described as a way to connect to others via ‘announcements’ of no more than 140 characters, called tweets, which can also include photos or short video clips. Registered users can create AND read tweets, whereas unregistered users can only read tweets and not create their own, or ‘like’, ‘retweet’ or send direct messages to others on the platform. Tweets are short, snappy and to the point, unlike Facebook statuses, which can be pretty long and lengthy in comparison. Facebook in comparison is great for reconnecting with long-lost friends and family members worldwide, and can be a fabulous place to store all your treasured photos. I also love using the Facebook messenger app, and I am part of several groups where we chat and connect over common interests. Both platforms provide a slightly different social media experience, and though some people have experienced the downside of social media, it has been such an incredible eye opener for me.
Social media is a great tool for connecting communities, and one I’ve become really involved with is the ‘spoonie’ community. ‘Spoonie’ is a term coined by Christine Miserando, based on the Spoon Theory, which you can read about here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ . The spoon theory is a way to help explain the daily difficulties living with chronic illness, invisible illness and disabilities, and when I first stumbled upon this term everything started to fall into place. You see, I have cerebral palsy, but for a long time I didn’t want to admit to it. I didn’t understand it, and I felt ashamed and embarrassed of these differences. It was only through looking into the spoon theory and the community of ‘spoonies’ that connect as a result of this that I finally found the courage to come to terms with my diagnosis. I found like-minded people through the #spoonie hashtag, I got to learn more about my condition of spastic hemiparesis and its associated diagnoses, and after years of lack of education about my disabilities, things finally began to fall into place. My ‘spoonie’ experience culminated in meeting up with several of my wonderful twitter friends with hemiplegic cerebral palsy themselves, and I finally felt like I wasn’t alone. There were people who cared about my welfare. There were people who understood my frustration and felt my pain. And I just knew I’d made connections that would last my lifetime.
I feel that some people worry about speaking out and being honest on social media for fear of ridicule. I actually expected to receive a level of scrutiny when it comes to disclosing diagnoses and potentially sensitive information, and almost prepared myself for it. Though I was initially okay with sharing information about my physical disabilities – notably cerebral palsy and scheuermann’s kyphosis – I wasn’t always so sure about disclosing my mental health issues. But there came that ‘lightbulb moment’ when I found that sharing this information wasn’t so bad after all. There was a similar community here; where people with mental health conditions felt connected, understood and that they were being taken seriously by their peers. And then I thought ‘why should I be hiding this aspect of myself? Why should I feel ashamed about conditions I have no control over?’ and I decided to speak up. I decided to be honest; not only with others, but with myself. Being transparent about issues I’d sat on and ruminated over for year felt incredibly refreshing, and genuinely cathartic. I finally felt like I was coming to terms with all my diagnoses, and I’d be lying if I said social media wasn’t integral to that.
In an age where disabled people – and disabled women – are finding themselves under ever-increasing scrutiny, it is my firm belief that we must speak up. Though there have been advancements made with regards to liberatory and emancipatory movements during the twentieth and twenty first centuries, we have a long, long way to go. I myself have been the target of ‘ableist’ abuse, further perpetuated by damaging stereotypes seen splashed across tabloids and inflammatory articles online. We have not reached a stage where disabled people can feel comfortable despite their diversity. Many people are accused of fraudulently claiming benefits, or exaggerating the nature of their conditions for apparent personal gain. It is a constant uphill battle for disabled people to thrive in such restrictive environments, but portraying an authentic experience of what it is to be disabled in twenty-first century western society is one way to seriously combat these issues. I want to continue to grow older knowing that social perceptions are changing, and that I can feel comfortable in my own skin, with my own differences and my own talents and skills to bring to the table. The disabled minority is the biggest minority group globally, and yet we seem to fall so far behind in supporting this group. In a world where more people are exceeding life expectancy and where medical advances greatly improve our quality of life, we need to act now and shape a society where disabled people are unafraid to speak out. And I truly believe social media has a big part to play in all of this.
Social media changed my life. It might just change yours for the better, too.
PS: I have just started publishing posts on My Trending Stories found here, so why not check it out? Don’t worry, I’ll still be posting here, too. Hope you’re having a great day,