Categories
disabilities General health and well-being Informative posts Things Cerebral Palsy and Scheuermann's Related Uncategorized working with disabilities

Permanently Exhausted Pigeon

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.

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disabilities General health and well-being Informative posts Things Cerebral Palsy and Scheuermann's Related

Physios, pain and patience

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.

Sigh.

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…

Heather x

Categories
awareness disabilities Mental Health Problems Mental Illness My Life The Spoon Theory Things Cerebral Palsy and Scheuermann's Related Uncategorized

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

Categories
General health and well-being Mental Illness The Spoon Theory

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

Categories
My Life Things Cerebral Palsy and Scheuermann's Related

Pain Management: My Experiences

Hello there. I’m currently writing from underneath a cosy blanket on the sofa. I suppose I have no excuse to be so lazy really, but I promise I am dressed and have made breakfast and have done all the Adult Things that you’re meant to do in a morning. I’m not feeling 100% today, but I’m a damn sight better than I was on Wednesday, so that can only be a good thing.  The sky is blue, the sun is shining and I have the flat to myself so I’m watching countless hours of daytime tv with copious volumes of tea to keep me going.

What I thought I’d write about today are my experiences of attending various pain management appointments. If you’re a regular reader you may be aware that I live with several chronic conditions and a couple of these cause varying degrees of pain. Due to the nature of my medical conditions there are no cures or quick fixes, and so I will have to deal with the resulting chronic pain. Though this takes some getting used to and can be mentally testing, I’m just going to outline my experiences with pain management and the physical side of things.

Some people I know really aren’t keen on the term pain management: they find it patronising, and possibly a little too vague (medical conditions affect everyone differently after all!) but I think I’m okay with it. For me, it took a very long time to accept that I needed help, and an even lengthier time realising that it’s okay to ask for help. Terminology aside, pain management basically deals with reducing the amount of pain one feels on a daily basis, and tries to enable those with chronic pain a better quality of life, including improved sleep, reduced fatigue and hopefully less pain = increased wellbeing. As many doctors have explained, pain levels affect a person’s mental health and outlook on life, and I can completely relate to this. Chronic pain is stressful; it is scary, it makes me irritable, and what’s worse is I don’t know how it will affect me in the future. So for me, I knew I wanted to give pain management a shot.

My first appointments started when I was around sixteen, and involved trialling various pain-management methods to find out which were the ones to provide the most relief. The treatments can vary greatly depending on your condition, but I started out with medical patches – namely a lidocaine plaster – which consists of a sticky patch impregnated with analgesia of some kind that adheres to the part of the body experiencing pain. I didn’t really rate these, so we moved on to alternative treatments, which included the use of TENS machines, capsaicin cream, laser treatment, corticosteroid injections, acupuncture and the last resort: pregabalin.As you can probably gather I ended up trying a lot of things. None of these really did anything for me, which can be really disheartening, I know. But I held out hope. And recently, I’ve found a pain management technique which works and has definitely reduced my musculo-skeletal pain.

So what is this pain-management miracle?

ACUPUNCTURE!

yes, you did indeed read that correctly! Acupuncture has really made my pain so much easier to deal with. And no, this isn’t just like traditional acupuncture; it does have some medical basis to it, seen here, on the NHS website. Although sometimes unpleasant, acupuncture has become an integral weapon in battling the pain I experience on a daily basis, and though this solution has been a long time coming (a whole 5 years since my first foray into the world of pain medicine!) it has really restored my faith in pain management.

Pain management can be an odd thing; it can be unsettling to ask for help, and it can be even more unsettling when things don’t quite go the way you’d hoped. But if you persevere like I did, you might find something that just works for you, or at least, as in my case, definitely helps. Pain management is no quick fix unfortunately but it is there, and I highly recommend you check out what the service has to offer you.

I’m all too aware that this is a slightly rambly-post, but I hope you understand what I mean. Have you tried pain management? And if so, what did you think?

Thank goodness it’s Friday! Best wishes for the weekend,

Heather x

Categories
Hull Bloggers My Life Things I'm loving

the Balm goodies*

This is a slight departure from my ‘usual’ posts, but when I went to the Hull Bloggers meet I came away with some really amazing goodies and I’d love to share them with you all. I was truly lucky to win an AMAZING bundle of the Balm cosmetics on our raffle, the proceeds of which went to the fabulous Look Good feel Better charity who you can see here:  http://www.lookgoodfeelbetter.co.uk/ .

the Balm goodiesI’ve been using the Balm products for a little over a week now, and having never owned any of the Balm’s products before I’m completely new to them. I have to admit make up serves a few purposes for me. Of course, I love experimenting with new products and styles, but make up is the one thing that can make or break a day for me, especially if I’m struggling and am in a lot of pain. I often find making myself look good helps me to feel my best, and gives me more confidence to face the day regardless of how my body is feeling. I was absolutely shocked to win this prize, and I have been having a lot of fun trying everything out.

First, I’m going to talk about the two eyeshadow palettes I received. I received Balmsai and the Meet Matt(e) Nude. One thing that really stands out about the Balm’s products is their quirky and unique packaging. It’s something I’ve never seen in any other product range and it really brings a smile to your face whilst getting ready in the morning.

Meet Matt(e) and Balmsai

Balmsai is a multi-functional palette, with a mixture of matte and shimmery nude and coloured shades. Each of the shadows are grouped together for ease of use. The mixture of matte and shimmery shades makes for a really versatile palette, and I’ve been finding I’m loving the shimmery shades for the festive season. I haven’t found fault in any of the colours as they’re all highly pigmented and somewhat creamy in consistency, so I don’t have to worry about fall-out all over my cheeks! The addition of the eyeliner and brow stencils means it’s easier to achieve lined eyes and neat eyebrows. This is something that’s quite difficult for me as my hemi hand doesn’t work as well as my other one, so having a stencil enables me to create looks I usually struggle with.

BalmsaiParticular favourites so far are Surfari and Stoked. Theyre perfect for adding a pop of colour into an otherwise natural make up look. As my eyes are greeny/brown, the purple shades seem to complement my eyes really well and I love the sparkle and iridescence in the coloured shades.

BalmsaiMeet Matt(e) Nude is, as you’ve guessed, packed full with gorgeous nude shades that are perfect for an every day look. I’ve been wanting to get my hands on a really good nude palette for ages and I’m so glad I have this as it’s everything I’d hoped it would be (and more!)

Meet Matt(e) NudeI also think some of these shades would be suitable for brushing through eyebrows with an angled brush for a bit of definition. Of course all these shades are matte, and like the Balmsai palette, the shadows are somewhat creamy in consistency so don’t tend to fall out after application. I’ve been using my EcoTools brushes to apply these shades and blend them out with my Nanshy blending brush, also a great product from the Hull Bloggers meet.

Nanshy Brush

Next is the selection of blushers and bronzers. The bronzer is Bahama Mama, and it a matte, deep brown shade. It has no shimmer and is great for contouring.

Bahama Mama

Bahama Mama

Next is the blusher Instain, in Houndstooth. This blusher has far more staying power than my usual blushers (Bourjois, Sleek) and is a matte, dark pink. This is great for adding a natural glow to the cheeks and is highly pigmented. I’ve had to be careful whilst applying this as the staying power means you need to make sure you’ve placed it in exactly the right place before blending in.

Instain in Houndstooth

Instain in Houndstooth

Hot Mama is a shimmery, peachy/pink  blusher with gold undertones. It can be used as both a shadow and a blush and adds a lovely glowy, dewy look to the cheeks.

Hot Mama

Hot MamaBelow you can see all three side by side. I am particularly enjoying Bahama Mama as a contouring bronzer, and though it looks really dark in the pan, it’s really good even on my fair skin and doesn’t look at all harsh when blended in well.

Instain, Bahama Mama, Hot MamaInstain, Bahama Mama, Hot Mama

Swatches

Next is the Mary-Lou Manizer, which is a gorgeous, super shimmery highlighter. Again, the Balm’s packaging is so cute, and is really well designed.

Mary-Lou Manizer

Mary Lou Manizer

To compare I’m using my Philosophy Divine Illumination highlighter in light.

Mary-Lou Manizer and Philosophy Divine IlluminationMary Lou Manizer and Philosophy Divine IlluminationThe Mary Lou Manizer is far more shimmery than the Philosophy highlighter, and is great for lightly highlighting the top of your cheek bones and the inner corner of your eyes.

Mary Lou Manzier and PhilosophyNext is the Body Builder What’s Your Type? mascara. The volumizing brush grips every lash. The formula is somewhere in the middle of runny and dry, and so coats every lash in just one coat. It’s great to build volume so you can acheieve either a more natural or more dramatic look depending on your mood.

What's Your TypeWhat's Your TypeSchwing is a liquid eyeliner and is great for creating a retro look. The formula is quick drying and very dark, enabling you to create great definition. The liner itself is very thin, and is fairly easy to use.

SchwingSchwingFinally I’m going to talk to you about the lip products in the bundle. I absolutely love lipstick and lip gloss, so these products were right up my street! The Balm Girls is a cute play on The Bond Girls, and is in the colour Mai Billsbepaid. It is a dark nude colour and very wearable. The bullet of the lipstick is really sleek and pearlescent, and makes the product itself an absolute joy to apply. The lipstick itself is matte in appearance and has great staying power. It stayed on my lips for about 7 hours during the day and only needed the odd touch up.

Balm GirlsThe lip gloss is the Pretty Smart lipgloss in ZAAP! It has a white shimmer in a hot pink base.

Pretty Smart in ZAAP!Though initially it seems really bright, it’s actually very wearable and gives a gorgeous sheen to the lips. It isn’t at all sticky, and has a fruity scent that disappears quickly on application. The doe foot applicator ensures even coverage on the lips. It doesn’t last for ages but I don’t expect lipglosses to have much staying power usually. My lips do feel hydrated after use, which is great in this cold weather!

Pretty Smart in ZAAP!All in all I’m extremely impressed with all the products you’ve seen. As I’ve said above, wearing make up can really enhance my day and I’m so grateful to have some truly wonderful products to use. The Balm has really made my make up bag so much more exciting, and I can’t wait to show you all some looks I’ve created.

I hope you’re having a great Monday!

Heather

Categories
My Life

The Past Week

I just thought I would give you an update from the past week or so as things have been really hectic and it always feels great to write about everything. It’s definitely cathartic discussing things that have been an issue, and so this is probably going to take on a more personal tone.

It’s been a busy yet wonderful 7 days. Exactly a week ago, I found myself in a room packed full of wonderful blogging folk. We ate cakes, sipped tea, got to try out some brilliant new products and had a generally all round fantastic day. It was really fantastic to meet some new people, and though I’d class myself as a born-again newbie blogger, it was nice to feel somewhat integrated into a community of bloggers. I struck it lucky on the raffles and came home laden with goodies and treats; all of which are jotted down into my blogging schedule to appear over the course of the next seven days. I admit I’ve been somewhat hampered; I cannot seem to access my photos from my SD card, yet on my camera itself it is displaying all the pictures I’ve taken. This is really frustrating, as I had some great things to show you on there. Hopefully I’ll be able to work it out soon, or alternatively I’ll just take some more pictures on a different device and hope for the best! Either way, it’ll buy me a bit more time to really get great use out of the products and hopefully I can provide you with a really useful review of the day itself and the products.

Since it’s the run up to Christmas, there’s been some great events on. I’ve had lovely little nights in with friends, cosied up with a bottle of wine and some festive treats, chatting the night away. I’ve also consumed the obligatory festive mince pie and mulled wine, watched a fair few Christmas films snuggled up in bed with only the light of a candle, and everyday I’ve been eagerly opening each little window of my advent calendar with a small piece of chocolate as a reward for my efforts. This is such a wonderful time of the year and I’m really grateful to all the generous people who are sharing it with me.

University work is beginning to pile up, and this is starting to take it’s toll on me both physically and mentally. I thought I was getting over the last ‘bad pain’ phase, but I fear it’s only just beginning. The most frustrating thing about living with chronic pain isn’t necessarily the pain itself, but the things that come along with it. I am so, so tired recently. All I want to do is sleep and this is becoming a real issue for me. When there’s so much to do (volunteering, studying, essay writing) sleeping for 10-12 hours every night takes a massive chunk out of the day. Yes, I could take painkillers, but these make me sleep anyway, and without them there’s a chance I might feel well enough to power through. I am so excited to get home and to try and have as much of a break as possible. Admittedly this won’t be easy considering I have 11000 words worth of essays due in for January, but at least my family can look after me a little bit and take some of the stress away. Cooking is becoming a real chore, and this is really sad. Cooking is a great stress reliever for me, but feeling this exhausted means I don’t always enjoy it as it completely drains me of any energy. However, I’m hoping that over Christmas I’ll be able to get back into the swing of things. In doing so, I’m aiming to start posts including my favourite recipes and food products. I absolutely LOVE food, and I’d love to share any inspiration with you all as I know how tricky it can sometimes be to come up with something exciting and different whilst working/having a busy day. I love quick, easy to prepare meals, as they’re much easier for me to create when I’m having a bad day, so expect some of these in the near future!

This semester has made me realise I need to stop expecting so much from myself. I definitely need a good break and to look after myself a lot more. Sometimes you need things to go a bit haywire to put things into perspective, and I’m definitely looking at things through different eyes.

I hope you’re enjoying the run up to Christmas whatever you may be doing.

Heather

 

Categories
Things Cerebral Palsy and Scheuermann's Related

Scheuermann’s Kyphosis: the basics

This is going to be a relatively short post as I have work to be doing and I’ve already been avoiding it all day so I need to get back to it as soon as I can! I think I’ve mentioned Scheuermann’s kyphosis briefly before, so I thought it’s probably time to quickly introduce it. When I was thirteen, I was diganosed with Scheuermann’s kyphosis. Scheuermann’s goes by many names, and sometimes it’s simply referred to as Scheuermann’s, sometimes kyphosis (or Scheuermann’s kyphosis) and often people also call it Scheuermann’s disease, but I prefer to avoid this if I can because a ‘disease’ implies that it is contagious, and this not at all the case! So, I’ll refer to it as Scheuermann’s, kyphosis, or if I’m feeling really fancy, I’ll use both words together.

I was told by my doctor that, in really basic terms, Scheuermann’s is where the vertebrae (the bones in my spine) developed differently. As a result, when the bones are ‘stacked’ on top of each other, they form a curvature in my upper spine. If you look at me sideways on, my back looks like an ‘S’. Now, I was always told that it was probably bad luck to have Scheuermann’s because no one actually knows what causes it. All I can tell you for certain is it’s not at all pleasant. It’s extremely painful, as my muscles around my spine (so the clever ones holding you upright) have to work really hard around my curvy spine.  So, as they’re working really hard, they can get very painful and ‘angry’ (perhaps I have a similiar reaction to hard work!) and thus I live with chronic back pain.

This year, I found out that spinal curvatures and cerebral palsy are linked, and so I think that my Scheuermann’s is due to having cerebral palsy. I can’t say for certain, but it seems rather likely. As well as pain in the thoracic (upper) part of my spine, my lumbar (lower spine curves inwards to compensate, and my cervical (neck) spine also curves to compensate. So as you can probably gather, I’m dealing with a lot of angry bones and muscles!

There’s no cure for Scheuermann’s, and my curve measures 70 degrees (or at least it did when I last had it measured). To put that into perspective, a healthy thoracic spine should measure between 25 and 40 degrees. So you could say I’m pretty ‘curvy’.

I did use a spinal brace at the age of 14, but I will be sure to blog about that experience separately. It was an experience to say the least. For now I manage my pain with various methods, including heat therapy, acupuncture, analgesia and gentle exercises. I do have ‘good’ days, and I do have ‘bad’ days, but that’s to be expected with a condition like this. Chronic pain is a really complex subject, and I don’t want to write about it here, but it’s something I live with everyday. For a brief glimpse into chronic pain, check out my earlier post here: https://nosuperhero.wordpress.com/2014/11/13/life-can-be-a-pain-sometimes/

So, that’s it! A speedy summary on Scheuermann’s kyphosis. I’m sure it’ll feature again shortly. For now though, I’m going to attempt to get back to my reading. Today Im reading When We Were Orphans by Kazuo Ishiguro. I haven’t quite finished it yet, but I’m enjoying it!

Until next time,

Heather

Categories
Informative posts Things Cerebral Palsy and Scheuermann's Related

Life can be a pain, sometimes

I say this with all seriousness. Life can be a pain for anyone, of course. There’s the usual stressors of everyday life, sometimes there’s issues with friends and family, and sometimes there’s problems at work.

However, for some people, life isn’t just a pain: life can be painful, too.

Having Scheuermann’s disease and cerebral palsy means that I live with chronic pain. Though it is a common misconception, having chronic pain doesn’t necessarily mean the pain is severe; it simply means that the pain lasts for an extended period of time (the word chronic is derived from the Greek ‘chronos’, meaning ‘time’). So, to put this into perspective from my point of view, if I’m talking about my back pain, I haven’t been free from that for over seven years now. That’s right. Seven years of pain occurring pretty much every day. So what does this constant pain mean? How do people living with chronic pain cope? And finally, how does it affect the way I live my life?

I’ve always found it difficult to articulate what living with chronic pain feels like. I’d like to say that the expectation of having pain is a constant thought in the back of my mind. Pain is the last thing I feel at night, and the first thing I wake up to in the morning. Yes, it hurts, of course it does, but there’s ‘good’ days and ‘bad’ days. There’s days where the pain is barely noticeable, but there’s days where the pain is all consuming and it stops me doing normal things. I like to think of my pain as a Bunsen burner flame. Like my pain, the Bunsen is always on; but the flame burns more strongly when you add oxygen to it. Like the flame, when I do too much (just adding more oxygen to the Bunsen) I can exacerbate my pain levels, and the pain becomes ‘stronger’ or worsens.

Sometimes this happens without prior warning. I don’t necessarily have to have done anything in particular to exacerbate my pain, (this can be really frustrating) but there is usually a reason why. Silly, I know, but sitting for an extended period can exacerbate my pain levels, as can standing for too long. I’m constantly needing to strike the perfect balance. If I go for a long walk, I have to be prepared that I may be in more pain as a result, from both my Scheuermann’s (abnormal curvature in my thoracic spine; I’ll explain all in a later post!) and cerebral palsy. It’s a really odd thing to talk about, and it sounds so silly, but I’m constantly aware that each day will bring different levels of pain. Being in constant pain means there are things I cannot always do, though when I was younger I tried to ignore the fact I wasn’t necessarily able to do everything that I’d like to. Going to the cinema is pretty painful, and as much as I like going out to eat in a restaurant, the extended period of time sat down means that can become quite a painful experience. I’ve recently had to accept that going out clubbing isn’t really the best thing for me. Being on your feet all night coupled with the fact you’re constantly being pushed into by drunk dancers doesn’t make for comfortable entertainment! Studying for university can become difficult, but I’ve learnt to deal with it by constantly working and reading, so that if I need to take a day off then I can.

There are various ways I cope with my chronic pain, so I’ll try to list them;

1) take painkillers as and when I need them.
I’m prescribed quite a hefty amount of analgesia, but only take tablets when I feel I can’t cope. I’m often described as having my very own pharmacy in my room, and I can’t necessarily dispute that!

2) use heat pads/various other heated products
I have a heat pad that brings great relief when I’m struggling. It’s basically like a miniature electric blanket and you can adjust the heat setting. My dad bought mine from Boots and it was such a great buy!

3) learn to take it easy
This has been really difficult for me. I’m quite an anxious person naturally so I tend to want to rush so that I get everything done as quickly as I can. In light of this I’ve learnt to give myself a break when I need it. Living with constant pain can be extremely draining both physically and mentally, and I need some quality time to recuperate.

4) have the occasional glass of wine
I’m not saying this and justifying it, however I have found that if I’m not prepared to deal with the side effects of my medication when I’m really bad, (drowsiness, euphoria, itchiness) I’ll have a small glass of red wine maybe about once a week. I don’t drink a lot of it, but I do notice it definitely helps to relax my sore muscles.

5) be happy!
Though things can be difficult at times, I’m truly happy and extremely privileged to live the life that I live. I’ve had a lovely upbringing, been to school, achieved great grades and I’m now studying at university and I’m expecting to finish my final year in 2015. Trying to keep happy means I take time out to do things purely for the pleasure of doing things. I like to watch rubbish telly in bed, I like to have the odd takeaway and not feel bad about it, and I like to spend time with really supportive friends and family. I’m very lucky that the university I attend is really supportive and adjusts things as and when I need. They’re truly great and I know if I’m having a particularly painful day I can inform my department and know that there’s support there if I so need it.

Living with chronic pain does mean I’m constantly accounting for ‘bad’ days or ‘bad’ parts of days. I found a theory someone came up with to describe this, and they have described it so wonderfully I don’t think I could possibly add anything more to it. It’s called the ‘Spoon Theory’ and was created by Christine Miserandino. Click on the link below to find out more:

The Spoon Theory written by Christine Miserandino

I’m aware that this has been a pretty long post, and if I’m honest I could add so much more to this and be writing for days. However, I don’t expect any of you would have the patience to read it (I know I wouldn’t!) So I’ll stop there for now.

Best wishes and I hope your week is going well!
Heather

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Informative posts Things Cerebral Palsy and Scheuermann's Related

Cerebral Palsy: what you need to know

When people hear that I have cerebral palsy, I (usually) get one of two responses. The first usually goes along the lines of, “wow, you’d never know, you look really well with it!” and the second is,”Cerebral palsy? I’ve heard of it, but I don’t know what it is”. Of course I’m speaking in very general terms, and it is worth mentioning that I am indeed conscious of the varying degree to which people are aware of the condition. However, I thought that it would be worthwhile to discuss the basics of cerebral palsy to further inform subsequent posts.

If we had never met before, and you were to come across me walking down the street, I’d be very impressed if you knew that there was anything ‘wrong’ with me at all. Whilst I hate using the words ‘normal’ (what constitutes normality, anyway?) ‘wrong’, and ‘different’, please bear with me! I’m hoping to make some sense to you all as it’s been a really long day! I physically don’t appear to be any different to the next person. I seem to walk perfectly normally, and appear fit and healthy. However, if you took a closer look, you might notice that I sometimes walk a little awkwardly on my right leg, and that I find my right hand a little awkward to use. So much so, I keep it tucked away in a pocket.

You see, I actually have a form of cerebral palsy called a right-sided hemiplegia. When I was born, I was premature and only weighed 2lb 11ozs. Being of low birth-weight can increase the risk of acquiring cerebral palsy, as does being part of a multiple birth, which I also was; I have a twin brother. Cerebral palsy is, in really basic terms, caused by an injury to the brain prior to, or fairly immediately after birth. I know when I was born my brain hadn’t fully developed on the left hand side, and though it did seem to recover and repair after my birth, it left me with the resulting cerebral palsy which affects (on a very basic level) my motor skills on the right hand side of my body.

When I was three I underwent an operation to ‘lengthen’ and stretch my right Achilles’ tendon. The form of cerebral palsy I have causes my muscles to be spastic, so that they’re always tight no matter when position they’re in. This operation enabled me to walk in the way that I do today, and for that I’m so grateful! I’ve also had lots of physiotherapy appointments, stretching plaster casts on my leg and, more recently, I’ve been using a splint to try to keep the muscles in my leg as stretched as possible. On painful or difficult days, I use a walking stick as I managed to find a rather pretty one. Or at least (I think) as pretty as a walking stick can be!

The main thing to note is that cerebral palsy doesn’t go away. There is no cure for cerebral palsy. And though my brain injury has already occurred, the affected muscles may continue to deteriorate over time through use and stress. My affected muscles can often become really painful because they’re constantly stiff and tight. I also have issues with my balance, with using my right hand, and my mobility, especially on ‘bad days’. There are so many other different symptoms associated with having cerebral palsy, and I’m aware of how long this post is becoming, so I’ll make sure to discuss them in other posts.

I’m sorry if this is rather dry and that this is possibly running the risk of being boring, but I felt like it was imperative for me to at least highlight the basics for you all! I hope you’ve had a wonderful week and I wish you an enjoyable weekend.

All for now,
Heather