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

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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)

Pain, Pacing and Piggies

Today has been one of those days.

I woke up this morning feeling as if someone had beaten me up as I slept. I tentatively opened my eyes, grabbed for my glasses, struggled to pull myself up out of bed and slowly waddled into the living room.

I just knew how this day would turn out.

Drew handed me a coffee and I swallowed down three pills – codeine and celecoxib – sat on the sofa, and eagerly awaited some relief. I waited. I took out a guinea pig to cuddle (great therapy) and waited.

Nothing changed.

Days like these are frustrating.

The most frustrating thing about chronic pain is its unpredictability. Of course there’s particular activities that are bound to aggravate my back pain – and annoyingly standing/sitting too long is one such ‘activity’ – but sometimes the pain just comes out of nowhere.

I must admit though, I don’t always help myself.

For years I didn’t really face up to the pain issue. I’d do things without thinking and then suffer the consequences. I’d go out shopping in town all day and deal with the fact I’d be up all night in agony.

It didn’t occur to me then how destructive this was.

For some reason, I seemed content with punishing myself. I’d blame myself for having ’caused’ the pain, and then tell myself I had to deal with it. Although I’ve been prescribed analgesia since I was thirteen, I did anything to avoid using it. The pain was ‘my fault’ and ‘my problem’, and I wasn’t going to take the ‘easy’ option by taking some painkillers.

Incredibly destructive (and completely untrue).

I’m not sure when my attitude changed with regards to taking medication (although Drew will probably tell you I’m still incredibly stubborn when it comes to this) but one thing that hasn’t completely changed is pushing myself.
Let me explain.

Mistake #1

Yesterday I went into university and got out a couple of books from the library. I put these into my handbag, and decided to walk home.

Mistake #2

On the way home I pass lots of shops. I rang up Drew (I was feeling peckish) and asked if I needed to pick anything up. We needed milk, so I popped into a shop, grabbed a basket and some milk.

Mistake #3

There were so many things on offer I just couldn’t resist having a look and more and more items ended up in my basket. I got to the till, paid and walked out of the store feeling grateful for the wonder that is Heron Foods (and its vast selection of biscuits)

Mistake #4

I decide to walk the rest of the way home despite the fact I felt like my shoulder was being pulled out of the socket. I had bought far too much but I was already halfway there…besides, asking Drew to come and meet me would be a huge inconvenience.

Mistake #5

I continued to walk home whilst struggling – having to stop every couple of pages to catch my breath – and still this wasn’t ‘enough’ to ring Drew for a bit of assistance. I finally made it home, looking like I’d been dragged through a hedge backwards. Breathlessly, I rang the doorbell and stumbled through the front door, collapsed on the sofa and moaned about my throbbing spine.

Drew made sure to remind me how ridiculous I’d been.

This kind of thing happens far too often. I don’t know why I do this; I know it makes absolutely no sense at all, and of course I ended up paying for it for the rest of the day.

Pacing is a phrase banded around a lot in the spoonie community (see here) and consists of prioritising activities ensuring you don’t run out of energy by doing too much at once. I’m all too aware of this but I haven’t really grasped it yet.

I’m 22 and always want things done now.

It’s difficult to accept that sometimes things have to be done differently, and right now I feel like I’m taking one step forward and three steps back. I think that’s why I’m really struggling. I am trying to get better, but sometimes I really can’t help myself; I can’t shake the desire to be ‘normal’, to not worry about my every activity and how it’s going to affect me.

It’s such a vicious cycle, because my depression and anxiety fluctuates when I’m like this. I really really need to learn.

I’m currently curled up on the sofa wrapped up in a blanket, dosed up on codeine cuddling my guinea pigs and wondering when I’ll change my attitude for good and realise I need to look after myself a whole lot more.

I hope it’s soon.

Heather x

Easy Eats: Nutritious Snacks

Hello there, lovely reader. A while ago I mentioned I was going to start writing up some easy, spoonie-friendly recipes and ideas. For new readers (hi!) I actually have a form of cerebral palsy called mild hemiplegia and a painful spinal condition called scheuermann’s. My cerebral palsy limits coordination and movement in my affected side and can also be painful, and alongside my recent diagnoses of depression and anxiety these can be a tiring mix!

On painful and tired days it can be a real struggle to eat well, so I thought i’d share some tips with you.

When having a bad day I tend to snack because I can’t muster up the energy to create a really nutritious, home-cooked meal. Here’s a few snacks I’ve come up with to help me on tough days:

Homemade granola
This is a really yummy, super easy thing to make. I store it in a big Kilner jar *insert heart emoji here* and then just dig in when I feel like it. It’s fab for breakfast, but like most cereals it’s great to snack on when you’re feeling a little peckish.

What you need:
2 cups of porridge oats (make sure they’re the proper ones, not the ones that make instant porridge)
2-3 tbsps of honey or maple syrup (I used half and half)
2-3 tbsps of oil (I used rapeseed oil but melted coconut oil would also be lovely)
Pinch of salt
Any yummy additions you’d like to add including dried fruit, nuts or even chopped chocolate. I used very dark chocolate (80% I believe) for a really chocolatey hit

Method:
1.Turn on the oven to around gas mark 2/150°
2. Mix all the oats, syrup, oil and salt in a mixing bowl until well combined. If adding nuts, you can add them to the granola at this stage to get them all lovely and toasty.
3. Prepare a baking tray by covering in grease proof baking paper to prevent sticking.
4. Spread the mixture onto the tray and place in the oven.
5. Cook for around 40 mins to get the oats lovely and toasted and golden. However you must make sure you continue to check the granola at 10 minute intervals: it can burn very quickly so be sure to keep an eye on it.
6. Remove the tray from the oven and leave to cool completely.
7. Once cooled, feel free to mix in as many yummy additions as you’d like. There is no measuring needed here; it’s completely up to you!
8. Once well mixed, place into a clean jar or container and this will keep for a good couple of weeks…if you can bear to leave it of course!

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I love mine with plain natural yogurt and the addition of fresh fruit. Blueberries and raspberries are lovely in this.

Fresh zesty salsa
One of my favourite dips. When feeling like a snack it’s great with tortilla chips, but for a more substantial meal I love eating it with oven baked wedges made using chopped potatoes or sweet potatoes.

What you need:
A handful of cherry or plum tomatoes (whichever you prefer)
Half a fresh lemon or lime (again, whichever you prefer)
A spring onion
Pinch of salt
Pinch of black pepper
Half a teaspoon of sugar
Glug of olive oil
Fresh chilli if you like it hot

Method
The easiest way to do this is to use a small food processor or chopper. We have a brilliant little processor from Aldi and this is really useful if low on energy (or simply don’t want to chop everything by hand!) If you don’t have a processor or if you want a chunkier salsa feel free to chop by hand

1. Wash veggies and put them into the processor/chop up.
2. If using a food processor, gently pulse to get required texture.
3. Add salt, pepper, olive oil, lemon/lime juice, sugar and chopped chilli if using. Taste and adjust seasonings accordingly.
4. Serve alongside tortilla chips, potato wedges, or anything else that takes your fancy!

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Sometimes I add chopped coriander which is also lovely. Sorry for the rubbish photo: I simply couldn’t wait to get stuck in!

Easy Banana “ice cream”

I’m oh so late to the party with this, but it is a delicious sweet something when you want to have dessert but feel too bad about diving into the tub of Ben and Jerry’s at the back of the freezer. Yummy!

What you need:
1 chopped banana per person
Optional toppings/flavours. I like nutella, peanut butter or Sweet Freedom’s Choc Shot

Method
1. Peel and roughly chop the banana.
2. Place into a sandwich bag and pop in the freezer
3. Leave until fully frozen and solidified
4. Remove from freezer and let it thaw out slightly
Place in a food processor or chopper, and pulse the banana until thick and creamy. Swirl any additional flavours in at this stage.
5. Serve and add toppings!

To make this really healthy omit the nutella (it is full of sugar but great for a treat) and replace with a drizzle of honey, chopped frozen raspberries, almonds or anything else that takes your fancy!

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The above pictures are an example of the less-healthy version…though choc shot is low calorie!

I hope you’ve enjoyed this post. Be sure to watch out for some more easy recipes; there’s lots more I want to share with you. Meanwhile, look after yourself and happy Thursday!

Heather x

‘Spoons’ and ‘Easy Eats’

There’s a little analogy those of us with chronic illness and/or disabilities like to use to try and describe the difficulties living with chronic illness create. This is called the ‘Spoon Theory’, and you can read this (rather lengthy) post by Christine Miserando which – perhaps ironically – takes lots of ‘spoons’ to read and understand (see here).

In simple terms, the idea is that each day you’re allocated a certain number of ‘spoons’. These spoons = energy. When someone is chronically ill/disabled, they use far more energy than an able bodied person (and I recently found out people with cerebral palsy expend between 3-5 times MORE energy than someone without CP. No wonder I’m asleep a lot of the time!).

Thing is, when you’re ill/have difficulty coordinating your body, things become harder to do, and you end up having to prioritise some tasks over others. Getting out of bed and getting dressed/doing teeth might cost me one spoon on a good day. That leaves nine to complete the rest of the day’s tasks.

Getting to uni on the bus and having to stand because there’s no seat: one spoon. Sitting in a three-hour seminar: two spoons. Getting on the bus home: one spoon…and, well, you get the picture.

If I exert myself too much one day, I just know I’m going to regret it the next. And if that’s the case, I might wake up with eight spoons rather than ten.

This can make all manner of adulty-things difficult. Before occupational therapy came round and installed some things to help me around the flat, having a shower for instance could be a real trouble, particularly because not only does my spine hurt/my neck hurt/ my right arm struggle to lift above my head to wash hair etc, but my palsy means my balance can be really off. I have slipped in the shower more times than I care to remember.

This also means preparing healthy, nutritious meals can sometimes be a real trouble. Luckily Drew is a super good cook (though he’d never admit it) and he helps me out more than I can say. However, when I’m home alone, and I have very little spoons, cooking can be a nightmare – and don’t even mention the washing up!

That’s why I thought I’d start a new section on here: Easy Eats (or something like that…I’m trying to be creative but failing rather miserably!). Of course, anyone can make these, but my aim for these posts is to create healthy, (hopefully) tasty, delicious meals easily with as little effort as possible, and I’ll try to include some hints and tips to make life just that little bit easier in the kitchen.

When you’re constantly ill eating well is absolutely essential; and, annoyingly so, a lot  easier to say than it is to do. I’m hoping this will be a useful addition to the blog; let me know what you think!

Watch this space!

Hope you’ve had a great Wednesday,

Heather x