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

I’m back…

…did you miss me?! Wait. Don’t answer that (you probably didn’t). As you can probably tell from my lack of posts it has been ridiculously busy over here. The year was bad enough generally (hello MRes, I’m blaming you) but the last few months have been so hectic all I’ve wanted to do is curl up into a ball and wait for the Whole Thing to blow over.

However, I’m here, and I’m going to tell you all about it…well, the short version, at least.

If you’re a regular reader (hello, you! Thanks for sticking around) you’ll know I went straight onto doing my research degree after my undergrad in English lit. I knew this would be hard, but I didn’t quite prepare for the level of stress, panic and general upset that would ensue. It has been a really tough year. I never realised how all-consuming a research project could be. I mean, don’t get me wrong, I absolutely loved doing my MRes. I thoroughly enjoyed the reading, and establishing (what I hope to be) a coherent argument based upon my own research, but wow, my thesis genuinely took over my life. It was all I could think about. If I wasn’t writing up, I was reading. If I wasn’t talking about it, I was thinking about it. And by the end, after several weeks of almost sleepless nights, I sent my lovingly crafted/edited/formatted thesis to the bindery. What I picked up – a whole 121 A4 pages-worth of blood, sweat and tears – made the process seem worthwhile. Holding that tangible object gave me the confirmation that yes, I did work hard, and yes,  it was something I could genuinely be proud of. As someone who is almost entirely self-critical and self-deprecating with regards to my academic achievements, this was a pretty special feeling to have. I’m hoping to find out my marks soon, so keep everything crossed for me!

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Amongst all of this, I was applying for jobs, attending interviews and continuing with several voluntary roles. Thankfully I landed an amazing job that I absolutely love, which will hopefully set me on a positive career path. I have just about settled in. The place is wonderful, and my colleagues are truly some of the loveliest people I have ever met. I’m working part time currently, but I am finally getting confirmation that I’m on the right track (whatever that may be).

This year has been a Big Year as far as years go. There have been the highest of highs, and the lowest of lows. I have made the greatest friendships, published an article in a journal, and been fortunate enough to still attend some fantastic events with the Hull Bloggers crew (posts to follow!). The lows have been low: I have drifted apart from people, relationships ended, some close friends have turned into strangers, and I often found myself in a constant state of change where I didn’t know what was happening and who I was going to be sharing my time with. But I have made it. And I can honestly, hand-on-heart say, that i’m feeling the happiest I have ever felt in months. I’m finally feeling like things are on an upward trajectory. And, with any luck, I’m hoping to stay up here – on what currently feels like cloud nine – for as long as I can.

If you’re still reading, and you stuck around for me, i just want to say a big thank you. I’m really grateful for your support, and just know that I really do appreciate every little like and comment. They brighten my day.

So yes. No Superhero is back. And she is here to stay. Keep your eyes peeled for posts…there are many in the pipeline!

Look after yourself,

Heather x

 

 

Nando’s: Exciting New Additions For Summer 2016*

Hello, you lovely lot! Here’s another gorgeous foodie post for you all. A few weeks ago I was extremely lucky to be invited to try out Nando’s new menu items when they launched on the 17th May, by the wonderful Callum over at Callum Jackson Blogs. I love trying new things, and Nando’s never disappoints, so I really couldn’t wait to see what they had to offer.

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We were welcomed into the St Stephen’s restaurant and sat at our places, marked by our favourite bottles of their famous Peri-Peri sauce (what a beautiful touch!) and waited excitedly for what was to come. We were greeted warmly by Callum, who explained what each new addition existed of, and treated us to a truly fabulous night.

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Firstly, we got to try the new range of Vinho Spritzers, which are a refreshing blend of wine, lemonade, and heaps of fresh fruit. First up, the white Vinho Spritzer; a refreshing blend of Crispy Cara Viva White wine, topped up with lemonade and garnished with freshly sliced lime and sprigs of cooling mint. The White Vinho Spritzer was a refreshing take on a white sangria, and I could see this being an absolutely gorgeous addition to a balmy summer evening whilst tucking into your favourite Nando’s! The Rose Vihno spritzer consisted of Summer Fruits Cara Viva Rose wine, spritzed with bubbly lemonade and raspberries, sliced lime and sprigs of mint. The Rose Vihno Spritzer was a huge hit with the Hull Bloggers, and would be enjoyed by those who like their beverages fruity and fresh. Finally, we had the Red Vinho Spritzer; Cara Viva Red wine topped up with sparkling lemonade, and garnished with raspberries, orange slices and a cinnamon stick. This was my favourite of the lot, as it reminded me of a summery-take on a mulled wine. It was warming and delicious, and I’d really recommend that one. Wonderful!

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Naturally, we couldn’t wait to try the rest of the new items, and it wasn’t long before we were presented with the delicious-looking Fino Platters. Now this was what we had been waiting for! A Nando’s legendary whole Spatchcock flame-grilled Peri-Peri chicken, served with a selection of colourful sides including Sweet Potato Wedges, Fino Coleslaw, Supergrains, chargrilled veg, and Peri-buttered corn-on-the-cob. Yum!
The Fino Platter is a great way to get together with friends and family to share some delicious food and good company, something favoured by our South African buddies across the pond which was the main inspiration for Nandos’ delicious new platter. The chicken is the main star of the show; tender, succulent and easily pulled apart, complemented by a tangy grilled lemon to squeeze over the top as you wish. This was absolutely delicious and it’s easy to see why Nando’s is so famous for its chicken dishes.

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Next up we had the corn on the cob; a sweet, crunchy, juicy cob, topped with lashings of spicy Peri butter that complements the sweetness perfectly. Divine!
Supergrain is a new side from Nando’s, which consists of a mixture of grains, including wheat berry, the ancient freekah grain, red quinoa and black barley, with added edamame beans, cannelloni beans, chargrilled bean halves, shredded kale and spring onion. This fabulous mixture is seasoned together, and dressed with light lemon and oregano. This was a real hit, and we couldn’t stop eating it! In fact, this is the first regular side Nando’s has added to their menu since Creamy Mash, so it really is a little bit of something special. It comes in Regular, Large and Nandino portions, minus the dressing for the Nandinos. Stunning, and again, a great addition for a summertime feast.

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The other sides – Sweet Potato Wedges and chargrilled veg – were a fabulous complement to the platter, providing just the right amount of variation and deliciousness to complement the show-stopper of Spatchcock chicken. It was a hugely satisfying meal, and seriously delicious. In fact, I have plans to take my friends next week because they need to try these new items! Gorgeous with a Vihno Spritzer to wash it all down.

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Finally, we tried Nando’s new delicious brownies, available in two gorgeous flavours; salted caramel, and Peri-Peri! Before you start panicking, the Peri-Peri brownie is not as scary as it sounds, and although I’m a salted caramel fiend, the Peri-Peri brownie turned out to be my favourite of the two! Salted caramel is bound to be a hit with most; indulgent, gooey brownie, laced with lashing of salted caramel goodness, and drizzled with chocolate and a hint of golden sparkle. As you can imagine, these were a huge hit, packed with caramel goodness and a deep, chocolatey flavour. The Peri-Peri consisted of the same gooey, chocolatey brownie base, with a hit of Peri-Peri packed punch. If you’re a chilli chocolate lover, you will love these! Although I was absolutely stuffed from the Fino Platter, these were too good to resist and we nearly finished the whole lot! They were served alongside a cooling scoop of Vanilla Gelado, providing just the right amount of creamy indulgence to finish off a meal. We were also keen to try out Nando’s new Peri Pomegranate dressing, a spicy yet sweet and fruity sauce, perfect for both savoury dishes and great drizzled over desserts. I particularly loved this on top of the Vanilla Gelado, providing a spicy-sweetness to cut through the creaminess of the Gelado. What a treat!

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Photo courtesy of Chelsea over at http://chelseahamilton.blogspot.co.uk/

We left Nando’s St Stephens with the biggest smiles on our faces, proving that good food AND good company is a great relief from the stresses of everyday life. I had had a hugely stressful week, and that was just what I needed. Nando’s launched their new menu items on the 17th of May, so they’re waiting for you to get stuck in! Thanks so much to Callum and the St Stephens team for hosting us; I’m sure we’ll be back soon!

Have you tried the new menu items yet? What do you think?
I hope you’re having a fabulous week,
Heather x

April Favourites (part 1) *

Hello! Just thought I’d write up a cheery post about things I loved using last month. These are a mixture of skin care, beauty and products to improve my quality of life, so there should be a little bit of something for everyone! I was fortunate enough to have received some of these products for review, and as always, I’ll indicate this with an *. I am only ever 100% honest when it comes to reviewing products, and I only ever share my thoughts and opinions with you if I truly, truly mean them. Honesty is the best policy.

There’s a second instalment to come, so keep your eyes peeled!

  1. Greenfrog Botanic Botanical Bodywash*

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I was lucky enough to win these at a recent meet in Leeds, and they are seriously wonderful. Greenfrog Botanic create gorgeously indulgent products that are cruelty-free, vegan, and full of organic products. They ‘live by the four Es: Excellent quality soaps, Environmental and natural products that conserve our planet, Ethically 100% vegan to protect our animals and Exclusive’. Greenfrog’s founders Nick and Julie use Himalayan soap berries in their bodywashes, which have been used for centuries, and are extremely passionate about environmental issues so have done all they can to ensure their products are natural and as environmentally-friendly as possible. I was extremely impressed with these, and particularly loved the Geranium and Peppermint scent. My boyfriend even commented on how soft and less-irritated his skin was after using this, and he never usually takes any notice of anything remotely skincare-related! A definite seal of approval there. I can’t wait to get my hands on more of this.

2. Bee Good Lipbalm*

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I received this at the Leeds meet, and it has become a daily staple! I cycle into uni whenever possible, so this is great for keeping my lips moisturised. It is partly made by British bees, and the scent is just delicious! It reminds me of those drumstick lollies I used to eat when I was a child, and I find myself smiling when I use it. It is colour-free and leaves a glossy sheen.

3. Tangle Therapy

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I bought this to help with my motor skills in my hemi hand (the side affected by cerebral palsy). It is a loop of rubber-coated plastic joints, that can be manipulated and moved with one hand. Not only is it great for working on movement if limited, it’s also really relaxing and ideal if you need something to fiddle with. I also have a Tangle jr. original, which is slightly smaller and not rubberised. Because I have severe anxiety I sometimes find I need something to mess around with in order to focus my attention, or diffuse the anxiety. I keep it in my pocket as the Tangle jr. is discrete enough to take out and about. I love Tangle Therapy one, but it is slightly larger so I tend to keep it at home. As I say, it’s great for working on my right hand. I have also included a picture of the Tangle jr. below, which easily fits into a hand. The Tangle Therapy is chunkier in comparison. The Tangle jr. is really cheap on amazon, and a great thing to try out for the price, whether you’re just wanting a fiddle toy or something to exercise your hand with. They come in all sorts of colours and with all sorts of textures. I think you can also get a smaller Tangle Therapy, but I haven’t tried one yet. I might do!

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4. Loreal Keratin Treatment* (shampoo and hair mask)

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I was kindly gifted this little set by Hays Salon, Hull, and I’m really impressed with it! It smells great, and the mask is luscious and incredibly moisturising which is great for my hair. Hays Salon is really friendly and they always do a great job, and I highly recommend it if you’re near Hull.

5. Viridian Ultimate Beauty Organic Skin Repair Oil*

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I received this in the Leeds’ Meet goodie bag and it’s absolutely fabulous! I already use Viridian’s Organic Ultimate Beauty Face Balm, and this of the same quality and luxury. I used to have terrible acne, so this product is great for softening the scarring. Smells great, too!

6. Kiko Campus Idol Brush*

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I was lucky to receive this at our Hull March Meet, and I’ve been using it ever since! Not only is the face brush brilliant, but it adds a gorgeous pop of colour to my dressing-table. Stunning! There’s no fall-out yet, and it’s lovely and fluffy for picking up product.

I was going to include a colossal 12 items in this one post, but I’ll spilt it up and you’ll get to see the second half later on this week.

What do you think of the products above? Are you keen to try anything?

Have a great week; I’m aiming to get as much dissertation work done as possible…wish me luck!

Heather x

 

 

 

 

Acceptance: Learning to Thrive

Hello there. I hope you’re having a wonderful day. It’s been fairly productive today which is really good for me; I’ve managed to get some work done, gone food shopping and done general errands, but as a result I’m now slumped on the sofa desperate for bed. It sounds like I’m being a little dramatic, but doing the ‘everyday-stuff’ – you know, the boring Adult stuff – can often be the hardest for me.

I can cope with my university work; I do a research degree at my own pace. I can cope with my occasional volunteering and of course I love writing this. But it’s the everyday things, the essential things that are becoming more and more difficult to keep on top of. Washing clothes, hoovering up, cleaning the bathroom, cleaning the kitchen, preparing and eating meals…these just take me ages and completely wear me out.

By the time I do all these things, my university work  and social activities, I’m pretty much exhausted.

When I was younger I suppose I didn’t realise just how much I relied on my mum and family to do things. Loading the washing machine for example leaves me in agony. I struggle to use both hands, so even just washing pots and pans and hand drying them is a gargantuan effort. Hanging up clothes to dry and then folding them away when you have half a body that doesn’t cooperate as you wish is physically draining.

And don’t even get me started on how I feel emotionally about all this. I can guarantee it wouldn’t make for cheery reading.

When I started university I realised that living independently is difficult. There’s lots of little things that need to be done during the day and when you don’t feel up to it – because of pain, or tiredness, or low mood – it’s all too easy to leave. And thus you enter a vicious cycle of accumulating mess/paperwork/laundry and no one wants that.

I started seeing an occupational therapist for the first time ever this year. I don’t know why, but despite my cerebral palsy diagnosis I’ve never seen one (and the repercussions of that belong in a different post entirely!). Seeing occupational therapists has genuinely changed my life. I never realised I was entitled to living aids. I never understood why I found everything so hard, but it was all explained to me. Seeing occupational therapists has been genuinely fantastic. Initially it was extremely daunting having someone come round to tell me that I needed extra help and things to help me around the house, and I found this hard to admit.

Someone once told me that getting help was giving in, and that’s always stuck with me.

Only recently have I come to realise that getting help is far from giving in; they enable me to live more independently. Using aids – a seat in the shower, a rail on my bed, a perch stool for cooking – lets me do the everyday things when I’m too exhausted to stand up or when I’m in severe pain. I can cook knowing I can sit down. I can grab a rail and get out of bed even when my body is resisting. It’s amazing.

The occupational therapist who visited my flat gave me a catalogue full of helpful living aids and I’ve been flicking through it circling the amazing things available. There’s chopping boards with spikes on so you don’t have to hold food whilst chopping it, and ‘easy reachers’ that mean I can pick stuff up without bending over and being in unnecessary pain. I’m realising I’m finally ready to accept this; I’m finally ready to accept that by getting these things to make life easier I’ll be living my life to the full.

It is not weak to accept help.

I don’t want to limit myself and my choices in life. I want what everybody wants; I want to happy.  I am taking the steps towards acceptance.

I am learning to thrive, and I will get there.

I hope you’re having a fantastic evening,

Heather x

 

 

Quick update

Hello there you lovely lot. Sorry it has been so quiet over this way. It’s currently exam season so I’m snowed under with work! I’m also attending lots of hospital appointments so I have very little time for much else. Put it this way: I work, eat, go to appointments and sleep!
Thanks for sticking around and don’t forget to check back soon.
Love,
Heather x

Meds, Appointments and Pain…

…are just a few words to sum up the last few months. It’s really strange. I worked out the other day that I haven’t had a single week free of hospital appointments since I moved back to uni. That’s three months with at least one hospital appointment every week (but sometimes up to four a week).

I am exhausted.

Being perpetually tired is something i’ve had to get used to as of late, and the worst thing is I don’t know what it is that is leaving me so run down. The other day I had my occupational therapy appointment. For anyone who doesn’t know, they basically help you to ‘do’ things better. So in my case – cerebral palsy (right hemi) – they  help me to make sure my hand has ‘reached its full potential’ in terms of coordination and control. As it turns out, I have a pretty powerful grip in my palms, but I find controlling my fingers and other fine motor movements completely frustrating. I can’t pick things up with my fingers  very easily at all, or do up buttons, or cut up my food at dinner, or use my right hand when my left hand is full (getting on the bus with the change in one hand/ticket in the other/personal belongings balanced somewhere on my person is incredibly challenging).

As is the case for many with a disability you learn to adapt to difficulties, and you manage to find a way around the more challenging daily activities. This isn’t always a conscious effort, and as my occupational therapist pointed out I won’t realise I’m making these changes. The adaptations one makes with CP aren’t ‘natural’; they’re not energy-efficient or ‘easy’ movements because they’re not the movements the body is designed to do. I had always read that people with CP expend between 3-5 times more energy than those without but I didn’t quite realise this until the other day, particularly with regards to my own CP.

My therapist gave me a simple task to complete with my right hand; I had to place plastic pegs into holes on a board. This wasn’t a trick and there was nothing sneaky going on: it was just a simple, easy activity.

But not for me.

As I tried to gain control of my fingers to pick up the pegs I dropped them. I then struggled to get the pegs at the right angle if I managed to pick them up (very awkwardly). My elbow was pointing outward, my wrist was curled under, and my whole posture changed; I was so, so intent on completing this activity my head felt like it would explode. Everything about my body was fixated on trying to complete this one little meaningless task, and it completely exhausted me.

and, most of all, I felt like a failure because I couldn’t.

I’ve never done these tasks before, and I’ve never seen an occupational therapist until this year. Treatment was mostly focused on my leg (physio, the occasional neuro and consultant) and my walking, as I had an operation to enable me to do so when I was very small. I think my hand just got a little bit left out on the way, and as a result I’m finding all these tasks impossible and ridiculous and a little bit of a shock to be honest.

Of course I’ve always known I haven’t had good control over my hand, and I often deliberately avoid using it because I drop things and have in the past been made fun of for it (kids, eh). But this exercise drove it all home to me.

It’s hard to live with a brain injury. It’s frustrating when your body doesn’t behave in the way you want it to. And it’s tiring, because not only is it physically taxing but mentally frustrating.

We had a long discussion about Everything, and it was so refreshing because I felt like she really understood me. We discussed the fatigue, and really it’s probably a variety of things combined into one; med side effects, pain-related tiredness, depression, anxiety, CP…and for now that’s something I have to work through. I need my medication. I can’t just stop doing things. And unfortunately neither my pain nor brain (ha!) can switch off for very long.

But most importantly what my therapist made sure I knew was that it is okay. It is okay to feel this way. It’s okay to take rest days, and it’s okay to have a break.

Living with a disability isn’t easy.

It is not okay however to make myself feel bad about all this, and feel bad about the fact I’m tired, or think of myself as a failure, or less than worthy. Because those thoughts just add fuel to the fire.

Having the depression and anxiety on top of the CP/spinal problem really doesn’t help (and I spend a lot of my day feeling sad/empty/guilty/horribly anxious as it is) but I do not need to add to these feelings.

I am not a failure, because I will learn how to do things differently. I will thrive, because I’ve already come this far without the help.

Getting used to everything is taking time, but I think I am getting there. It’s just going to take time.

I am sorry because this is a really rambling, ridiculous post, but (as always) many thanks for reading if you got this far. It means a lot.

Take care of yourself whatever you’re doing; we could all do with a break every now and then.

Heather x