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Informative posts Studying at University with Disabilities

What Not to Say to Someone With Chronic Illness and Disabilities

Hello there, and thanks for stopping by! This is going to be a slightly unusual post today, but it’s something I’d really like to share with you all. As you may know, I have a form of cerebral palsy- mild spastic hemiplegia – and a spinal condition called Scheuermann’s kyphosis. These are long-term illnesses, with no cure, so it’s just about learning to manage and live with the associated pain and mobility difficulties to ensure I have a good quality of life. What has been really shocking to learn is that people assume they’re an expert of chronic illness and think it wise to give out tips and advice. I know, we’ve all been there, but it’s something that never ceases to amaze me! After all, I know my body better than anyone, and I know how my conditions affect my day-to-day life. I just thought I’d share a few snippets of advice I’ve often found funny, and usually unhelpful. Some comments are pretty hurtful, but I know some are simply well-meant.

Just to clarify, this is not a dig at anyone at all, and this isn’t intended as something to offend any well-wishers: I just think it’s helpful to realise sometimes things aren’t always what they seem and maybe we can all think before we say something to someone. You never know how your words are going to affect someone else.

‘Chronic illness? But you look so well! How is this possible!?’

I get this a lot. I really do. And whilst I can appreciate I do look ‘fine’ most days, it can be very frustrating to hear. Firstly, it makes me feel fraudulent. No, I don’t use a wheelchair, and even when I use my walking stick I appear able to walk normally and without difficulty. However, I spend the majority of my day in constant pain, and it’s really wearisome having to reiterate this. Secondly, there’s also the idea that if I’m dressed up nicely or have make up on, that I can’t really be that ill, because, you know, I’ve made ‘an effort’. Having chronic illness doesn’t mean you have no desire to feel good. I still want to look as nice as the next person, and when I feel like it I really enjoy wearing a little bit of lipstick now and again. It just goes to show that you never know what’s underneath it all. (oh, I also enjoy wearing a bright shade of red when I can…makes me feel I can take on the world, especially on bad days!)

‘Why don’t you try exercise? I’ve heard it really helps [insert illness here].’

I have couple of things to say about this one. What I do seem to notice is people often recommend exercise when they don’t really understand the condition. Last year, someone asked what cerebral palsy was. Immediately upon hearing this, they proclaimed that exercise would cure it. Funny…they didn’t know what it was prior to asking! Though I know exercise is fantastic, and I do exercise as much as I can to keep my muscles as flexible as possible (particularly in my hemi side) sometimes the nature of my conditions limits me in terms of exercises. Some I simply can’t do. Most others leave me in a lot of pain. People also assume that I don’t try/never have tried/that I’m unfit anyway. I happen to walk quite a lot, and considering walking is something I find challenging, (particularly with regards to the palsy) this can sometimes be very painful and very tiring. However, I always try. Sometimes I try too much, end up walking for miles (often in a bid to push myself) and subsequently suffer for it. What I’m basically trying to say is don’t assume exercise is the be all and end all. It can be brilliant, but think about it: if you’re in severe pain, would the first activity to spring to mind be a jog/some workout at the gym? No? Didn’t think so.  Also, I’ll add here that when I was at school I still used to take part in PE and sports days despite my medical conditions and difficulties. One memorable sports day I volunteered for a long distance running race. At school, very few people knew about my cerebral palsy, but when I crossed that finish line (I came fourth out of eight) it was amazing. I’d done it; I’d also competed against people with no mobility or pain issues. It was possible, but I won’t say it didn’t hurt. I can still think back to the feeling of intense burning, crampy, sickening  pain in my hemi leg that followed. The PE teachers gave me some little gifts to say well done: they appreciated how difficult it must have been for me and I’m truly grateful for that. It’s an experience I won’t ever forget.

‘Ah, get well soon!’

I feel bad about including this comment, because this is obviously well-meant and I appreciate the sentiment. However, it is difficult to explain to people that my conditions won’t get better. I have done this once or twice, and I’m usually branded a pessimist. I just call it being realistic: there’s no cure for either. They fluctuate on a daily basis. Yes, some days are better than others. But I will be living with these for the rest of my life, and I have (mostly) come to terms with that. I’m still sad I included this one but hopefully you’ll understand what I mean!

‘You’re just an old lady really!’

This really, REALLY annoys me. This reiterates everything I feel about myself. Some days I wake up in so much pain I feel like I’m years older. I can’t do normal household chores without intense back pain, I can’t go shopping without my body hurting and I can’t do ‘younger people’ stuff like clubbing without things becoming very difficult. Of course I enjoy a good dance every now and then, but it becomes extremely painful. The next day is an issue not because of the ensuing hangover (well, at least not the majority of the time) but because my body is tired…it’s tired of the pain. Don’t call me an old lady. It’s never okay. It’s one of these things that really get to me. Calling me an old lady basically confirms all my worst fears. I have a hard enough time thinking of myself in this way, and I’d rather you didn’t add to that.

‘You’re just lazy/milking it’

I just don’t even know what drives people to say things like this. I didn’t choose to have these conditions. I can’t help that sometimes I need rest and relaxation. Just try putting yourself in someone else’s shoes: do you think it’s easy living in pain every day? It is also well-documented that people living with cerebral palsy use more energy than an usual. It’s tiring stuff. The latter part of the above comment was one of the more hurtful things I’ve heard. When I was in school, I had to wear a spinal brace. This was extremely uncomfortable. I had to wear it 23 hours every day and the hour off was for showering/PE. Because it was hard plastic, it dug in everywhere, and I’d end up with bruised hips, itchy skin rashes and marks cutting into my skin from the plastic. It constantly forced my spine into an unnatural position, and this was painful. Wearing that brace was awful. I felt detached from my own life: it was like I stepped into a magazine and became someone else. ‘Will I have pain for the rest of my life? So, you mean it’s incurable? My spine might get worse?’ These were questions I found hard to ask and even harder to understand when I was thirteen. I was thrust into a world of painkillers, hospital checks, physio, pain management, and procedure after procedure. This was on top of my appointments for my cerebral palsy. Having people claim I was milking it was something I really didn’t need. How insensitive can you be?! The worst part is that a person who said this talked behind my back and told my friends I was ‘milking it’. At the same time, they’d be really lovely to my face and would offer to help me in any way they could. As you can imagine, hearing that was extremely hurtful, and I never really associated myself with them at all after that. I still avoid having to now, despite the fact we have mutual friends. Please don’t do this, ever. The last thing I’d ever want to do is feign an illness. If I had it my way, I’d be completely healthy and have nothing wrong at all. As it stands, I’m not. Don’t make assumptions because you don’t understand.It’s a comment that I haven’t ever been able to shake off since the age of thirteen, and I don’t think I’ll be able to forget it.

I know this is an unusual post, but I hope it has given you something to think about! On a light-hearted note, I have two huge bars of chocolate to get me through the last couple of weeks of essay writing. I know I can do this, but it won’t be easy. Wish me luck!

I’m getting closer to that finish line…

Heather x

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Hull Bloggers Informative posts My Life

bad day

As I sit here typing this I can see the dull gloom of the sky outside, and the flickering light of candles on a desk. The landscape reflects my mood; the sun is absent, not even a patch of blue is to be seen and the sky is so overwhelmingly grey. Today is a grey day, and my mood seems similar. I feel dejected, stressed, tired and everything else that comes along with it. I’m at a stage where I’m really resenting things. I resent my body; I resent my body right now because I wake up in pain and I fall asleep in pain, it hurts to walk and it hurts to sit, and all the silly, mundane things that need doing in everyday life seem impossible and difficult. Washing my clothes is an ordeal, making my bed is a challenge, and cleaning the house leaves me in so much pain I can’t do anything for the remainder of the day. I feel hopeless. I feel ashamed of my body, and even more ashamed of the way it makes me feel. Today the pain in my body is taking it’s toll. I feel robbed of the opportunity to do things without having to think of their consequences. I am constantly weighing up the pros and cons of analgesia, knowing that either way I can’t win. Today I am realising that I struggle and it’s the struggle that’s the hardest to address. I am stubborn; but there’s only so much I can take on the bad days.

I’m hoping for a brighter tomorrow.

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Informative posts My Life Studying at University with Disabilities Things I'm loving

The Importance of Relaxation

I have to admit I’ve always been a stressed out, anxious person. It’s in my nature to worry about everything, and sometimes this worry is completely overwhelming and all-consuming. Coupled with chronic pain, my anxiety can spiral out of control. Being in pain almost constantly is physically exhausting, and can really affect you mentally. When I was younger I acted as if my cerebral palsy and Scheuermann’s didn’t exist. I think this was my ‘coping strategy’, but of course I wasn’t really coping with anything at all, I was just denying the existence of my medical conditions. Since moving to university I’ve recognised this, and during the past year or so I decided I needed to really work out a way of coping with the pain and stress that comes along with chronic medical conditions.

I cannot emphasise how extremely important it is to have rest days and to relax your body and mind if you’re dealing with a health condition such as cerebral palsy. Even if you’re not living with a chronic medical condition, you still need to give yourself time out to truly relax and to forget the worries in your life. When I was younger I thought it was perfectly fine to be completely wiped out from exhaustion after a day shopping, or to be in agonising pain after sitting to eat a meal in a restaurant. Yes, it’s normal for me to be in pain, but my body needs time to recuperate and get back to its normal self. There’s a few ways I do this, and I thought it would be a useful thing to share with you all.

Heat therapy is so relaxing. From a bubbly hot bath, to a hot water bottle and my trusty heat pad, heat therapy is soothing and relaxing for my body. I particularly like the homedics range and I own the shiatsu back massager, shiatsu neck massager and hand held massager with interchangable massaging heads. Below is a link to their products through boots: http://www.boots.com/en/Homedics/

I also love the heat packs that you heat in the microwave. I own a particularly cute one in the shape of a cuddly rabbit! These are relatively cheap compared to the homedics range, and can really help on sore days.

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Having hot baths with some pamper goodies can really help me out, too. The Body Shop stock some gorgeous products and you can always find lots of voucher and discount codes online if you type in ‘body shop codes’ into your search engine. Using high quality pamper goodies doesn’t always have to break the bank, so stock up if there’s a particularly good offer on. Recently my boyfriend purchased £40 worth of products for £20, which is an absolute bargain!

I also love candles. When I’m needing a rest day, I’ll get some reading together and spend the whole day in bed, taking painkillers as and when I need to. Putting a few candles on can really create a lovely soothing atmosphere. I also love my mooncandles, which are flameless and battery operated. You can change the colours of the ‘candles’ using the remote they come with, and they’re really very pretty. I purchased mine from Tesco. You can also purchase them online. I apologise for the picture, but it’s very difficult to capture just how pretty they are on camera!

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Having de-caffeinated drinks is a must when I’m feeling anxious or in a lot of pain. Though I thoroughly enjoy coffee and tea, I find herbal teas are particularly soothing on a stressful, painful day. I love Twinings Camomile and Honey, or the Twinings Peppermint Infusion. I was also introduced to Peanut Hottie at the Hull bloggers meet, and this is becoming a firm favourite. If you’re a fan of peanut butter, I suggest you give it a go!

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For my 21st birthday, I was spoilt rotten by all my wonderful family and friends. My boyfriend did make me a desk top zen garden as one of my gifts, and I’ve found it a really lovely way to relax. I wouldn’t say I’m particularly into the concept of zen or Buddhism, but raking the sand whilst stressed is a great way to relax yourself. Plus, it makes for a very unique object and you can create lovely works of ‘art’ in the sand with a mini rake. Zen gardens are available to purchase ready made online, however my boyfriend made this out of a photo frame. He glued the glass into the frame and turned the frame over. All he had to do then was buy the sand and objects to go into the zen garden, and he let me assemble it myself. It’s such a thoughtful gift, and it’s a true pleasure to own it. For secret Santa, my housemate thoughtfully bought me an oil burner with a selection of essential oils. This is such a fantastic gift for me and the essential oils create a soothing atmosphere in my room. Alongside my zen garden, it creates my very own relaxing space, and it’s really great!

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Buying a bouquet of flowers or a plant for my room instantly brightens up the place and so makes me feel more relaxed. I loved these gorgeous yellow roses. I arranged them in my marmite tea pot, and I thought they looked really lovely.

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I hope I’ve given you some inspiration. Hopefully in no time you’ll have a relaxing place of your very own!

All the best for the rest of the weekend,
Heather

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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

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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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My Life Things Cerebral Palsy and Scheuermann's Related

And so it begins…

I’ve always been one of those people who have started writing a blog, enjoyed it, then somehow let living my life get in the way of writing it. It’s a similar scenario when it comes to keeping diaries; I say I’ll aim to write a wonderful account in it daily, but then I realise that 1) my life isn’t really hugely exciting, and 2) I find other things to do.

I have tried to fathom out an explanation for my lack of progress many times to no avail, because despite the enjoyment of the blogging itself, I came to the realisation that I’d become disheartened with the whole idea. I never began blogging with the expectation  that I’d draw in plenty of readers from across the globe, (though I did get a fair few followers,) but I just stopped believing that what I was writing was a worthwhile (or even enjoyable) read.

I think the problem was that there was no clear direction for my last blog. It had an incredibly ambiguous and vague direction. If I remember rightly, I labelled the page as a space to talk about my life, which is, in all honesty, nothing more than ordinary. I could probably sum up the generalities (and banalities) of my life in no more than four sentences. I’m no super hero.

What I did find useful and sometimes even therapeutic however, were certain posts I featured on my blog. I live with cerebral palsy, in the form of a mild right-sided, spastic hemiplegia.  I also live with an abnormal increased kyphosis in my thoracic spine, sometimes known as Scheuermann’s disease, which is probably caused by me having cerebral palsy to start off with. These are both life-long conditions. They’re not always easy to deal with. Pain forms a huge part of my everyday life, and coming to terms with my conditions has been an arduous, emotional process. Blogging about my medical conditions helped me to fathom out my feelings towards them, and allowed me to share information with the world that I didn’t usually discuss. It felt good to discuss my feelings surrounding the cerebral palsy, as it’s something people aren’t always aware that I live with, and most importantly for me, those posts provided me with a place where I could be honest with myself. It was hugely cathartic.

In light of this, I decided to start this blog specifically for talking about my disabilities. I hope it will be (at the very least) 1) informative, and 2) as cathartic as previous as attempts.  It would also be fantastic if my silly posts somehow managed to help others in my position, because I know having someone to relate to has made my coming to terms with things a whole lot easier. I’m not going to claim I’ll be updating this daily, because I don’t really know yet, but I will do my best to post whenever I can. It’s a start, and I promise I’ll try.

If you’ve managed to successfully navigate through my (often pointless) ramblings, I applaud you! Before I make this far longer than it has to be, I’ll stop myself right here.

Until next time,

Heather