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.

Categories
General health and well-being Informative posts Studying at University with Disabilities Things Cerebral Palsy and Scheuermann's Related

Realisations

I feel like I’ve been having a mid-life crisis.

No, really.

I thought I’d had my life and career all mapped out: I’m graduating with my MRes (with distinction!) in July; going on to do my English PGCE in September, then I’ll teach. Sorted, right?

Wrong.

I’m not ashamed to say that I’ve well-and-truly changed my mind, at least for now. I’m not really sure if this was a gradual process, or a sudden ‘light-bulb’ moment, but I just know teaching is not the right thing for me at this time. Doesn’t mean it’ll never be. It’s just, right now, not what I want to be doing.

I’d be lying if I said my disabilities didn’t have an impact on this decision, because they absolutely, almost certainly did. I’ve had the unique experience of actually being able to teach before embarking upon teacher training; I have my own classes, mark registers, prepare resources and do all of the other usual ‘teachery’ things that teachers do (except marking…thank goodness). And this unique insight has perhaps shown me that though I may think I’m invincible, and though I do not like to admit that my cerebral palsy can cause issues, it’s a struggle. And, being truly honest with myself, I just think I’m not cut out for the teacher training, with all the rigmarole of planning and marking and studying simultaneously.

There. I said it. I’m not cut out for it at the moment.

know I’m a good teacher. I’ve had several observations from line managers that have been great. And I love teaching. It’s hugely rewarding seeing that ‘light bulb’ flick on; it’s intensely gratifying watching a student mould, change and develop into themselves. It’s a pleasure to watch their confidence increase; to share their successes, and to pick them up when they need a boost. But it’s also hard. Teaching is – in my experience – either really good, or really, really bad. There’s nothing more frustrating that children refusing to listen, or making fun of your lesson that you’ve spent hours planning. There’s been no in between. And at this stage of my life – where I’m eager to establish myself, and settle down – I just need to focus on what it is I really want to do right now.

I feel strangely liberated by this. I thought I’d be bricking it: I am a person who thrives on routine, after all. But it’s finally time for me to really think about what I want to do, and to go out there and do it. And, most importantly, I need to make sure I look after myself.

Sometimes it’s okay to not know what you’re doing right now. Sometimes it’s okay to have a realisation, and to act upon it. I am taking this time for me, and for my body, and for my mental health. I know there will be bumps along the way, but I am excited to see what happens.

 

Categories
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
Informative posts

Cerebral Palsy: some things to know

Hello there. I’m afraid this is only going to be a quick post because I’m currently wrapped up in a blanket trying to get pain/fatigue under control!

I currently volunteer for Scope on their online forum as a Community Champion, which is really lovely as I get to chat with a variety of people from a variety of backgrounds. Scope is one of the UK’s leading charities for supporting disabled people and their families, and their website and blog has a wealth of information about certain conditions and I thought it’d be great to share some information with you regarding cerebral palsy, which is often misunderstood.

You can find out more here.

Why not come and join in on our online community? We’re a lovely bunch, honestly!

Hope your Friday is going well,
Heather x

Categories
General health and well-being Informative posts Studying at University with Disabilities Uncategorized

Acceptance: Learning to Thrive

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

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

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

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

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

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

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

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

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

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

It is not weak to accept help.

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

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

I hope you’re having a fantastic evening,

Heather x

 

 

Categories
General health and well-being Hull Bloggers Informative posts Mental Illness

My 2015 round-up

Hello there. Now it’s safe to admit that Christmas is well and truly over. The decorations and trees in people’s houses have come down, and there’s talk of spring cleaning and resolutions everywhere you go.

In light of the New Year I feel a need to look back on it and reflect a little.

image

2015 was an odd year. There were fantastic highs, and terrible lows, and not really much in between.

Let me explain.

2015 saw me finally accept I needed help for my depression and anxiety. Initially, this was a terrible situation. My anxiety was without a doubt at its worst. I found it almost impossible to leave my house without Drew. And when things got too much, I couldn’t bear to even bump into my housemates so I deliberately altered my sleeping pattern to avoid people. Of course, it wasn’t anyone’s fault, but things got so bad that every sound made my heart beat so fast. I’d wake up dripping in sweat, having been jolted awake by terrifying flashbacks to a traumatic time, and dealing with all this alongside chronic pain and third year was really very difficult. Though it was a definite low point, I’m pleased to say that things got better.

Because, what’s most important, is that I realised I needed help and made the decision to get it.

That’s a definite high point, because it was the best decision I ever made. Through a mixture of counseling and medication, I’ve managed to keep my mental illnesses under control.

2015 was also increasingly difficult with regards to chronic pain from my spinal condition and cerebral palsy. There were very bad days. So bad in fact that for a week or so my diet consisted of instant cuppa soup as getting up to cook things was just far too painful, especially when having to prepare things with my affected arm.

But, I am pleased to say that I made it through. And, in what feels like forever, I’m finally being listened to by doctors. For once I feel like people are listening. That people really do want to help. And as a result I’m seeing an orthopaedic consultant, neurologist, occupational therapist, physiotherapists, orthotists and having regular pain management. Though I know there will never be a cure for my cerebral palsy and spinal problem, I know I can look at managing their symptoms and getting the best out of my body. Slowly , and with the help of my occupational therapist, I’m learning to undo all that negative ableism that’s permeated my thoughts. I’m learning to accept that it’s okay when I can’t do certain things. I’m learning to accept that my best is more than good enough. I’m learning that I have achieved so much in spite of all these things and that I need to stop being so hard on myself. I’m finally learning to accept who I am.

It’s OK that I can’t always do things for myself. I’m doing my best, my absolute best , and that’s all I can ask for.

I certainly did my best in 2015 when I graduated from university with a BA hons degree in the summer. Those painful, long-winded nights in the library dosed up on codeine paid off. I did it, and for once I can admit that I did well. Here is a picture of Drew and I in our silly hats to prove it.

image

I also got onto my MRes course at university, which is everything I hoped for and more. Fingers crossed I’ll be getting to wear that silly hat again once more!

2015 saw me getting more and more into my blogging. Blogging initially started as a way of achieving catharsis and discussing things I felt were important to me. 2015 saw my blogging continue to grow and I want to take the chance to say thank you for putting up with me! You’ve all been fabulous. You have no idea how much it means to me that people actually read what I write on here!

I also collaborated with some fabulous brands this year, which is absolutely amazing! I’d like to thank Personal Planner, Primula, Wren Kitchens, Al Porto, Ultradex, Nine to Five Heels and Stick to Stigu (just to name a few!) for the wonderful opportunities you have given me. It has been fabulous to work with you all and many thanks for your support!

image

image

image

2015 also allowed me to continue making lots of friends through blogging. The summer event was absolutely fantastic and I’ve made some really lovely friends. I’m hoping that the #HullBloggers will go from strength to strength in 2016, and thank you all for being so lovely!

image

It sounds a little silly but 2015 saw me get these two wonderful little things: my guinea pigs Smudge and Patch. They have provided so much joy through difficult times and I hope will continue to for as long as possible. They even made it into my doctors notes because they’ve helped with my well-being so much!

So though 2015 wasn’t the best in parts – there are some things perhaps a little too sensitive to mention on here that contributed to that – i am so thankful for the good times. I’m hoping to make 2016 much more positive now that my medication has been sorted out for everything and seems to be helping.

As always, thanks so much for reading if you have, and Happy New Year to you!

Look after yourself whatever you’re doing,
Heather X

Categories
Informative posts Studying at University with Disabilities

Hullywood Loving

Hello, you. It’s Thursday and I’m in bed working. I put the guinea pigs into their pen and they’re currently nibbling on hay and being squeaky and generally very cute. As far as days go, recently things have been Good; because it’s bonfire night tonight I’d usually be very worried about the loud noises and bangs and things but right now I’m feeling okay, although I have no doubts that my startle reflex will be playing up nicely of course. But it’s okay, because right now I am feeling positive and good, albeit ever so sleepy.

Anyone who knows me personally will know I’m a proud mancunian. I LOVE my hometown of Manchester; it’s vibrant, bright, dynamic and just generally very wonderful and most importantly it’s home. When I was looking around universities I looked for ones very close to Manchester because I knew I might need a little support from time to time, but when people found out that I was coming to the University of Hull, many were skeptical at first.

You see, Hull doesn’t have the greatest reputation in the UK. People seem to remember it from its fishing days; ‘Hull smells a lot, I remember that!!’ or seem to think it rather run-down, lacking in amenities and things to do. In my leavers’ book someone wrote a comment about Hull being grey and dull, and whilst I won’t lie and often the skies may be grey and foggy this time of year, the place is anything but dull.

This will be my fourth year living in Hull, so I think I’m qualified to correct those who think badly of it. There are lots and lots of things to do here (and remember, I’ve lived in Manchester for most of my life and I think that’s a great comparison!). There are a number of restaurants to visit (including the lovely Al Porto, which will be featured in an upcoming post! There are bars, pubs and clubs where you can dance the night away/drown your sorrows/sing badly on karaoke. There’s places to go bowling, watch the latest films, play laser quest and you can even go and visit some penguins at The Deep which is a stunning aquarium (trust me, I love going there and would go every week if I had the time). The centre of Hull is also home to 3 indoor shopping centres and historic Old Town, so there’s plenty of places where you can go and enjoy some retail therapy. Newland and Princes Avenues are full of interesting boutiques, bars, cafes and restaurants, and it is a lovely bustling part of town near to the university. If you’re partial to a charity shop haul then there’s plenty to choose from down Newland. I have spent many an afternoon on the lookout for books/clothes/furniture I probably didn’t really need in the charity shops that are dotted along it, usually followed by a coffee in one of the numerous cafes on either Newland or ‘Prinny Ave’.

The university itself is beautiful with a mixture of old and new buildings, and currently campus is covered with a blanket of golden leaves that crunch satisfyingly underfoot. My department (English) in particular is wonderful; they are incredibly supportive of their students and will help in anyway possible. If you’ve been reading you’ll know my mental health has made things difficult for me, but my department has always been there to support me when needed. I love attending university; I’m always learning, always developing and I’m always pushing my boundaries, and no doubt the English department has been integral to that process.

Every time I return to Hull from Manchester I get that rush of excitement when I approach the Humber Bridge. It has been a place where I have grown, changed, and (hopefully!) developed as a person. Things haven’t always been easy whilst living over here, but it is the place I will always remember. So much has happened since I’ve been living here and I’ve become so incredibly fond of it. Although it’ll never be my ‘hometown’ I think I’ll always have a special place for Hull. All I ask is that you take your time to get to know the place before you slate it. I know this is only a short post, but I really fell like I need to stick up for the place. It is unlike anywhere I have been before.

Hull, has been good to me.

I hope you’re having a peaceful Thursday and enjoy yourself if out watching fireworks. Stay safe!

Heather x

Categories
Hull Bloggers Informative posts Mental Illness

New Starts

Hello, lovely reader. Sorry it has been a little quite over here, but I’m finally feeling ready to get blogging again. My summer job really took it out of me physically and I had to get emergency appointments for uncontrollable pain and a couple of days off which made me feel completely awful. However, I’m currently relaxing under a fluffy blanket and feel like I have the strength needed to write a little informative post. After what has been a challenging year, I’m beginning to think that this month has been a turning point, particularly with regards  my mental health. I’m sat in my flat (I only just moved into it a few days ago) surrounded by lovely, wonderful things,and everything feels so bright and colourful and fresh. I am on the ground floor which makes painful days so much easier and there’s a big garden i can look at through the living room window. There are a couple of cats that hang around in the garden, and right at the very end is a genuine ww2 air raid shelter, which is quite amazing. Drew is moving in fairly soon and I’m really looking forward to living together. It all feels very grown up but I’m really excited as we get on so well.  I have wonderful friends I’m looking forward to seeing soon at university and I can’t wait to start my postgraduate course. Finally things are just blissfully falling into place and I’ve been going to bed with a big smile on my face almost every night and I can’t remember the last time ice felt this good! My pain is still very much present but I’m in a good place mentally and feel that I can deal with it; I’m just feeling so positive. I’m really, REALLY glad that I made the decision to take medication for my anxiety/depression. It’s truly changed my life and I’m so grateful to get what feels like a second chance.

Yesterday I went to the Hull Bloggers summer meet, which was a truly wonderful day, filled with chat, nibbles, interesting brands and many goodies! Expect a post explaining the day soon with reviews of wonderful goodies to follow! I’m in a Good Place right now, and I’m sure it’ll only improve after my pain management appointment tomorrow

Im sending love and positive vibes; I hope youve had a wonderful Monday 🙂

Heather x

Categories
Informative posts My Life

It’s Wednesday

Hello there lovely readers. This is just a super quick update really as I take a break from writing up essays and proof reading my dissertation! It’s all come around so quickly so I’m glad to be keeping on top of it. Things are a lot better since my last updates; couldn’t really deal with living at my own house so I’ve temporarily moved in with my boyfriend whilst I get my work out of the way. It’s definitely for the best, and it’s keeping my anxiety levels down. Pain levels are quite difficult to deal with at the moment but I know I can push through and get through the work. I’m not worried about that aspect of things at all. Just letting you know I haven’t abandoned this or anything, and I’ll be back to my regular rants/silly things as soon as possible. Also thought you’d like to know I’ve just set up a tumblr account as well, and you can find me at http://nosuperheroblog.tumblr.com/ . There isn’t much going on over there at the minute but I thought I’d give it a go to supplement my wordpress blog! Give me a follow if you wish and feel free to send me any links to your own accounts; I’d love to see what you’ve been up to!

All the best and happy Wednesday,

Heather x

Categories
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