Disappointments, Direction and Decisions: Visiting the Musculoskeletal Clinic

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…

Heather x

Therapy: Letting Go

It’s been a while since I started CBT, and I recently had my final session. CBT, though essentially great, brings up some conflicted feelings. I suppose that’s inevitably the case with  any talking therapy, but as my CBT went on for almost three months, I feel like I really invested a lot into each session.

Therapy for mental health conditions can be really helpful, but – and as with any treatment – you can’t expect a quick fix. Admittedly, though I’ve had counselling before, when I first started CBT I didn’t account for just how hard I’d have to work and how emotionally draining I’d find it. Walking out of the first session I felt simultaneously overwhelmed and absolutely empty, and I remember walking around the nearest supermarket aimlessly and directionless, with what felt like a flick-book of every emotion I’ve ever felt whirring through my head. It did, of course, get easier over time, but I always found it difficult to snap back after each session. 

Each of my sessions were tailored to me each week, depending on the situations I found difficult, and the topics I really needed to address. I loved this part of the session, as we’d draw up an agenda and tackle the issues most important to me. Essentially, though, what each of my sessions boiled down to was working through my low self esteem and trying to recognise and acknowledge the good things I have done. Thing is, I get so blinded by feelings of anxiety, hopelessness and inadequacy that I completely ignore the good and positive things I have achieved throughout my life.

I also spent a considerable proportion of my sessions working through hypothetical situations that I often worried about, with the aim of learning to accept  that I cannot control everything in my life, and I cannot solve everyone else’s issues. This was a particularly challenging topic to address, but I feel like I made some really positive progress in learning to accept and work through these issues.

CBT also addressed what felt like a dirty little secret for far too long. Thing is, I always suspected i had OCD-esque traits, but I’d never actually been diagnosed. Along with the assessor prior to my CBT, we agree that I do have OCD that fluctuates from day to day. I have always been a stickler for routine, but I knew things were a bit unusual when I found myself checking clothes, and jewellery, and other things that really didn’t require constant checking, like whether my alarm was set or that my door was locked, even though I could see that the latch was on. It’s frustrating, because no matter how much I know that these things don’t need checking, I cannot resist. And if I try to resist, I feel an unstoppable anxiety bubbling up which can only be ‘quelled’ by checking. Of course this only reinforces the behaviour, which makes it a really hard cycle to break. I have worked on techniques to help, and I am noticing that I’m getting better, even if this progress is only slow. 

CBT provided some great coping mechanisms to work towards in order to reduce the symptoms of anxiety and depression. These include keeping logs of activities that I’m particularly apprehensive about, or recalling situations that I found difficult and then examining mine – and other people’s – responses. Crucially this made me acknowledge that situations aren’t as bad as I expect them to be, and that working on evidence – and not speculation – is key to working towards a happier, less anxious life. 

Now that my CBT has come to an end, I’m facing the everyday struggles with a mixture of apprehension and pride. I’m proud because I’ve really improved, but apprehensive because I suddenly feel all alone. The relationship with your therapist becomes a really important one; they’re there on a professional level, to help you through what can sometimes be the most challenging times of your life, but they somehow become more than just a confidant as you build up a relationship with them. You open yourself up completely to them, and they are privy to some of your greatest fears, deepest emotions and darkest secrets. They become integral to working through your mental health issues, and  invest a great deal of time and effort in helping you. I feel a little bit lost facing the big, bad world on my own, but I am so grateful that my therapist has equipped me with the skills to tackle this on my own. 

I suppose I’m finding it difficult to let go. I know that I’ve only just embarked on my ‘journey’ (and no, I’m not keen on that explanation, but it’ll have to do) but I know it’s going to be a long, hard slog. My mental health does fluctuate, and dealing with my physical disabilities brings another layer of complexity to proceedings, but I’m positive that I’ll get there; whenever ‘there’ may be. 

I am letting go, and I am learning that I can do this on my own. I just need to prove it to myself. 

Social Media, ‘Spoonies’ and Speaking Out

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,
Heather x

Sources:

http://www.butyoudontlooksick.com/ (2016)

https://newsroom.fb.com/company-info/ (2016)

https://about.twitter.com/company (2016)

Backstage In Biscuit Land at Kardomah94*

Hello! This is a post I’m really excited about sharing with you. A few weeks ago I was asked if I’d like to attend a couple of events at a local venue, and when I found out the subject of the events I absolutely had to accept! This was the first of the events (the next is in a couple of weeks)  and is an award-winning show that has received fantastic reviews from critics and the general public. I knew I was in for a treat, but this show completely exceeded my expectations!

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When we arrived we sat for a beer and admired the lovely food coming from the kitchen – the pizzas looked INCREDIBLE – and the atmosphere was really lovely and ambient. Kardomah94 would be a fabulous place for a spot of dinner! The show space was fantastic, and we picked a lovely spot with extremely comfortable bucket chairs.

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Backstage in Biscuit Land is an extremely powerful show, containing equal measures of comedy and emotion. It is a show unlike any other, and is something that will stay with me for a very long time. It was shown as part of the Heads Up Festival in association with the Battersea Arts Centre, which presents some of the most exciting contemporary British and international theatre in some of the best venues in the city of Hull, of which Kardomah94 is one.

Through a mixture of puppetry, comedy and song by the aptly-named ‘Touretteshero’ Jess Thom – and her sidekick Chopin – we are given a poignant and at times intimate insight into life with Tourettes. You see, Jess Thom has Tourettes, which causes her to say ‘biscuit’ 16000 times a day.

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Tourettes is a condition often trivialised by the media. We’ve all heard jokes about people swearing loudly then blaming it on Tourettes, and most of us – myself included – understand very little of the condition, so it was incredibly refreshing to be introduced to something I know very little about.

The set itself was like something out of a dream; huge cardboard cutouts of trees, a loaf of bread, dolphin puppets, an assortment of biscuits and twinkly lights, and as we sat down in our seats we heard a muffled voice projecting a stream of assorted words from the wings. Chopin welcomed Jess onto the stage, and explained that her tics would  – inevitably – contribute to the show and its content. We were encouraged to laugh at the tics if we found them funny, and sure enough some were so unusually wonderful they were difficult to ignore. As is turned out Chopin – real name also Jess – is referred to in that way as a result of tics!

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Jess explained how tourettes is an awful lot more than the media-portrayal of incessant swearing that we’re all accustomed to. Jess needs to have a care plan sheet, which informs a reader of the steps needed to take when she has a fit as a result of the Tourettes and constant physical and verbal tics, which become completely exhausting. This is another of the realities of tourettes we don’t often hear about; sometimes her tics become so intense she loses the ability to communicate with others. This was extremely interesting to hear, and made us realise how hard life can be with constant physical tics. Jess revealed that her vocal tics have also made life very difficult, and recounted a time where she was asked to leave a theatre as she was apparently disturbing others. This was incredibly emotional – in essence the episode made her feel that she wasn’t allowed to be herself – and this really got everyone thinking.

Anyone who knows me will know how personally invested I am in societal perceptions of disability. My MRes explores disability through literature and the impact this has upon cultural attitudes. Though I have a form of cerebral palsy and other conditions – which aren’t always noticeable – I have been treated disrespectfully and without care by members of the public. It can be really upsetting, and Jess’s story really resonated with me.

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The whole show was a spectacular journey of incredible highs and gut-wrenching lows, and when I went to meet Jess and purchase her book and a T-shirt emblazoned with a selection of tics, I was completely overwhelmed. Her work is so integral – so vital – to thousands of people who face prejudice every single day for disabilities they have. Awareness is key; disability doesn’t discriminate. It doesn’t care where you’re from, or who you are. And I firmly believe that sharing experiences is key to advancing understanding of disability. Disability has many faces and forms, and the more we discuss it the more we can begin to understand.  I left on a complete high, and feel privileged to have had an insight – albeit small – into her world.

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Jess and Chopin are currently touring their Backstage in Biscuit Land show around the UK. You can see the tour dates and locations here.

Thanks for having me Kardomah94 ; I can’t wait to visit in a couple of weeks for another fantastic show!

Hope you’re having a great evening,
Heather x