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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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My Life

Anxiety: Taking Baby Steps

Hello! I hope Monday got off to a great start for you. It’s been a fairly busy few days, and I thought it’d be quite nice to incorporate these journalistic posts into my blogging routine. Blogging after all is extremely cathartic for me, and sometimes it’s great to change things up a bit. What I haven’t really been so open about on here is my recent struggles with anxiety, but if you follow me on twitter I’m sure you’ve been able to follow various updates (that are admittedly fairly angry and annoying) about my general health and emotional wellbeing.  I can’t say I’ve ever been a laid-back person. I’m the kind of person who worries about how they’re going to answer a question in a seminar, or if I’ve somehow come across rudely, or whether or not I’ll be able to head into uni without panicking about it first. When I was younger I’d worry so much I’d work myself into a fit of tears, crying in bed as my stomach twisted and turned, my pillow damp with tears. Of course, I can’t really say why I worried like this. All I know is that I did, and it was very real. There was no stopping my worrying. My mum would constantly tell me I was making myself sick with worry (which was often the case), I’d catastrophize every situation, and I’d get that same stomach-churning, knotting sensation deep in my tummy. I remember many a night, prior to associated board vocal exams finding myself in a state of panic; ‘What if I forget the words? What If I can’t sight-read the piece? What if I sound absolutely awful?’ Although I passed these exams very well, the panic never ceased. The same occurred for every music concert, every question answered in class, and every time I over thought an embarrassing situation. It’s not an easy way to be, but I didn’t know how to be any different. I couldn’t stop it, no matter how hard I tried. Even as a tiny child, I remember the panic  that ensued when I even so much as thought about being in trouble. It frightened me.

This anxiety has never ceased, but it has definitely developed into a different beast. Since being diagnosed with Scheuermann’s, I’ve noticed the relationship between my pain levels and my anxiety (and vice-versa). Some days when I am having a particularly difficult pain day, I get what I can only describe as a ‘feeling of doom’ inside my stomach, like something unbearably bad is about to happen. This is the same for the painful symptoms associated with my hemiplegia. When both my back and hemiplegia are very painful, it’s an absolute recipe for disaster. I’m sure it’s a feeling some of you are more than familiar with.

In April last year  my anxiety really spiraled out of control. I was definitely at my worst: something extremely traumatic had occurred at home, and I was one to help pick up the pieces. I don’t want to go into things, it’s very painful and extremely upsetting, but it’s something I had no control over which only made things worse. Things got so bad I couldn’t leave the house, especially when on my own. If I managed to get into uni, usually with my boyfriend accompanying me, I’d panic as soon as I realised I’d have to sit in a room with people, so I had to go back home. I’d continually cry. It was like the tears wouldn’t stop rolling down my cheeks, no matter how hard I tried. My heart was beating out of my chest, I couldn’t eat, and I felt so nauseous I didn’t feel like eating even if I tried. I felt so alone, in unbearable amounts of pain, and unable to obtain help because I felt terrified every time I left the safety net of my bedroom. I couldn’t even talk to my housemates. It was a really, really bad time.

Over summer the situation that was the main contributing factor to my anxiety stopped being as much of a problem. I was still anxious about everything, but not in the ‘housebound way’ I had been previously. Things looked better for me. I no longer felt like despairing. Things weren’t completely fine, but I felt better. Unfortunately I’ve had  a slight relapse; the original situation that caused such heartache last year hasn’t gone away, and I’m not sure it ever will. This is the most painful part, because I feel like the same thing is going to happen again if I don’t take preventative measures. I have however managed to ask for help. People tell me this is a huge step, so I only hope they’re right. I’m going to see someone Friday  (I did originally have an appointment last week that was cancelled at very short notice, which is never a good thing) but I’m hoping something useful will come out of it.

It’s easy to feel you’re completely alone when going through anxiety and other related conditions. I know now that I should have sought help a long time before now, but I’ve set the ball rolling and that’s the important thing. There are the resources out there, it’s just a matter of seeking them out. Surround yourself with people you can trust, with people who will help you through this  difficult time. I’m reluctant to take medication if I can absolutely help it. This is not because I think medication is a bad thing; I know it’s a lifeline for some people and that’s fantastic, but for personal reasons I’d like to see if I can manage my anxiety in a different way. I’ll keep you updated on my progress.

Just don’t give up. You will find a way.

Heather

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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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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

 

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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