How Cerebral Palsy Affects Me During Illness

This week I have been a bit poorly and I think it’s fair to say that I certainly have the ‘it’s autumn- welcome to the colder months cold. Everyone has a cold as unfortunately, it’s cold and flu season, however, having CP means that when I become ill it’s affects me a lot more in terms of fatigue and energy levels. So, I thought I’d share what I do to ensure that my body gets the rest it needs during a period of illness to ensure that when I’m well again I am not just well again but I am on top form!

1. Putting my own needs first!

Old mug!

Putting my needs first should be a given but when I have other things going on such as university deadlines it’s not that simple. I’ve been lucky this week in the sense that I’ve had 2 days off and not a massive workload but next week I’m on placement so if I’m still ill I will find it a lot harder to say ”I’m going to bed” when I get home knowing that I have a reflection to write. But going to bed is just as useful, self-care is vital and is, if not more important than that assignment! On a good day, it’s takes me twice as long to do a piece of work than it perhaps would an average person. So what good is it wasting more of the little energy I do have on a small amount of work that probably won’t be up to my standards anyway? So, I might as well top up my energy levels so I can have more of a productive session the next day!

2. Prioritising

Photo by Breakingpic on

In my opinion putting my needs first is crucial and a good way to do this is by prioritising. I make a to-do list most weeks, but I find that when I’m poorly they come in useful, this is because as crucial as putting my needs first is, it can be stressful when I’m poorly around deadlines. So I feel like writing down a to-do list and prioritising what needs to do helps to take the pressure off, when I’m poorly and stressed it’s easy to get myself in a tangle but writing down what I need to do it really helps me to relax. For example on Wednesday, I didn’t feel great however, I was worried that I was going to waste my day off because of being ill, so I wrote down my to-do list, which made things clear and actually made me realise that I didn’t need to do that much work at that moment in time. I just did the tasks that needed doing for Thursday and then spent the rest of the afternoon regaining some energy.

3. Remaining positive

When I feel rubbish and must carry on when all I want to do is curl up in a ball it can be very frustrating! However, remaining positive about my situation certainly helps, the reasoning behind this blog is to make people aware that having a cold affects me a lot more; it’s only a cold and yes I have to be careful and not to push myself (which I’m known for) but I’m not in no means going to be the most unwell I’ve ever been or ever will be from a cold. Remaining positive is easier said than done and don’t get me wrong I love a good moan too; realising that my situation could be worse helps me to put a smile on and get through the rest of the day. However, it’s also important to admit when I’m not okay and when I’ve had a rubbish day, like I said I’m human, I’ll feel sorry for myself for an hour or 2 but I always think there’s someone out there having a worse day…

What are your tips to get through the cold and flu months?

Thank you for reading,


The Hidden Elements of My Disability

A few months ago I wrote a blog post on How My Physical Disability Can Be Perceived in which I kind of defended myself in saying I’m not always as complicated as I seem. I’ve mentioned on multiple occasions that I don’t like the fact that when I say I did maths at college people assume I had to redo my GCSE’s, but on the other hand this doesn’t mean that my physical needs aren’t demanding because at times they are. I’m not writing this blog post to write a list of my needs and tell you what I can and can’t do, because let’s face it that’s a bit boring and a bit too much information. However, I want to give you a few examples of how not everything is as it seems…

For example, take my profile picture- on this day I was going to a party (I’m aware I need a much more professional picture hopefully I’ll have a new one soon) so, I have my hair done and my make-up on. Everything looks ordinary, yeah? It is ordinary but I didn’t do my hair or my make-up, my sister did. I’m not saying the sole reason why she did my hair and make-up is that I couldn’t have done it because I can, it just wouldn’t have been as good. I understand, that I’m not an artistic person and I’m not saying that without CP I would be a hairdresser or a make-up artist, but this would certainly be easier. So, why am I tell you something I’ve already told you before? This is because on this night people at the party who didn’t know me and was sat at the other side of the room probably just thought that I was an ordinary individual with no complexities. This isn’t a problem, I am an ordinary individual and I do want to be treated the same but, at the same time, I wish that people could just see how much effort it’s taken me and my sister to get my sat there looking how I wanted to look.

Another example is when I’m sat in a restaurant eating with friends or family, to other people around me I’m just enjoying a meal. Which I am (I always enjoy food); the people around us won’t know that whoever I’m with has had to cut up my meal or that I’ve ordered a burger because it’s a lot easier for me to eat. Whenever I go to university or placement I always make sure I look respectable; people don’t realise how much effort goes into me looking respectable for example when I’m on placement I have to have my hair tied back which again means that my sister or mum has probably done it. I love fancy tops it’s very rare you’ll catch me in a plain t-shirt, in which I might have a top that buttons up, meaning that someone has helped me that morning to button it up.

I don’t mind that I need help in these situations because I’ve never known any different and I have got more independent at doing tasks like my hair and my make-up over the years; I know that I’m always going to struggle with buttons. Which is fine I don’t want people to feel sorry for me but if people knew how much effort these daily tasks take me then I feel people would understand my complexities a lot more. For example, in the winter I go to university I have a cold- so what it’s winter everyone’s got cold, I’ll put a brave face on and not complain. But it affects me so much more in terms of fatigue and puts me at the risk of potentially having a seizure and even though I may not complain at university I’ll come home have dinner and go straight to bed because I’ll be too tired to do any other work. I’m not saying that an able-bodied person doesn’t also do this, but it’ll be a lot easier for them to push themselves than it will me because that work may only take them 30 minutes but for me, it’ll take an hour.

I’m not writing this blog to tell you how complicated my life is and to be negative, I’m writing this blog to explain to you how many elements of my disability are hidden. When I went to Berlin with college, my friends said that they didn’t realise how much I depended on someone because when I’m at college and university I don’t need to depend on someone as much because plans have already been put into place; when I get home and I need someone to cut up my dinner and bring me a drink upstairs so I can wind down and watch TV whilst drinking a tea. It’s fine that these parts are hidden we all have private aspects of our life’s disability or not but my hidden aspects hide a lot about my disability and I just feel like if more people knew this my needs would be a lot more clear and I wouldn’t have to explain why I’m not going out that night even though I may only have a sniffle. I’m not saying that people wouldn’t help either; at times situations occur where I don’t feel like explaining and telling everyone about the private aspects of my life.

Thank you reading,


What Going on Holiday Means to Me

Everyone needs a holiday, disabled or not we all need a few days or weeks off to just wind down and get our heads out of the game! Well, I certainly do, I’m always ready to go on holiday and in need of a break when times comes to it. So, I thought I’d tell you how going on holiday helps me because I’ve mentioned quite a few times about how tired I can get when I’m ready for a break. I like to keep myself busy, and at times despite how tired I am I still find it hard to wind down and switch my brain off but going on a summer holiday and lying around the pool really helps me and gives me the reprieve I need!

What I get up to on my summer holiday:
My summer holidays are generally relaxing pool holidays and let me just tell you when times comes to it this is definitely the type of holiday that I need and although I find it hard to switch off when I get on the sunbed I can relax. I mean not for hours as I find the sunbed very uncomfortable; having the sun on my muscles is a very good feeling. In winter I suffer from a lot more aches and pains and there are nights I come home and want a hot bath so even if it’s an uncomfortable sunbed getting on there and just letting my muscles soak up the heat is very relaxing…

But as mentioned I can’t just do nothing, so I do have to have my kindle in my hand or have my earphones in to enable me to stay relaxed a little longer. Getting into a good book on my holiday is a must for me to enable me to relax, all year round I rarely read but for those 2 weeks on my summer holiday, I become a book worm! I generally read fiction books and enjoy getting into a good novel, last year I read a book called ‘The Ables’ by Jeremy Scott, which is about superheroes with disabilities. This book was recommended to me by a friend, I would certainly recommend it too! This is the first book I’ve really read about disabilities and I really enjoyed it so if you have any recommendations please send them my way.

Photo by Perfecto Capucine on
I’ve clearly not taken this photo, I’m still getting into taking aesthetically pleasing photos for my blogs but, the drink has a straw in it so, I’m not complaining!

MUSIC!!! Music plays a massive part in helping me to relax when I’m on holiday, as in case you haven’t gathered from my logo, I’m really into music. I like quite a range of music to be honest but when I’m winding my number 1 choice must be Ed Sheeran, he’s just my ultimate favourite! My Ed Sheeran playlist is by far the longest playlist I have in my music, I know not all his song are relaxing but when I put Ed Sheeran on, I go to a different place no matter what song! However, I will certainly be listening to Lewis Capaldi around the pool this year as well his music is amazing.

I just thought I’d show you how ridiculously long this playlist is! I’m even listening to him whilst I write this blog- so holiday or not music, Ed Sheeran in particular always enables me to wind down.

But going holiday also means I get to go swimming which isn’t always relaxing; it still means a lot to me. In my last post, I talked about physio and how I’m not the best at it but of course, swimming in the pool is one of the best types of exercise for me as it enables me to get all my muscles working. Again, I don’t go swimming at home but when I get on holiday it is one of the aspects, I love the most! I’m not the best swimmer and I never go down to the deep end but just doing a few widths is enough for me and gives me great pleasure. I also really enjoy floating in the water, that I find really relaxing, I’ll admit I need support when floating but with the right support I can easily float for a good length of time!

So that’s what going on holiday means to me! Going on holiday really does help to relax me as I am a person that gets stressed very easily so not only does it help relax me physically it helps me to relax mentally, I know this for sure as I can guarantee you that when I come back I become ill because I’ve let my body to relax. But as mentioned disabled or not everyone needs a holiday!

What do you get up to on your holiday?


The Physical Complications of Getting Older

If you follow me on Twitter, then you will know that lately, I’ve been talking a lot more about how I feel the need to do more physio. I don’t live in pain every day and I feel lucky as I know my situation could be a lot different but, I still experience pain and for the past 2 months this pain has become more frequent. Therefore, I have started to up my physio and have been doing it a lot more regular- don’t worry this blog isn’t a blog telling you all about what physio I do because that would be wrong of me as we all know which therapy my interests are in but I just thought I’d share my thoughts with you. Also, I’m hoping this will be a short post as I really owe you something short for all the rambling I’ve been doing recently.

I’m not writing this blog to complain about my pain either because I don’t really have the right to- yes, some days it’s painful; I’m fine it’s not affecting my activities of daily living. I’m going to openly admit that I know I don’t do physio as often as I should and only really do it when I’m experiencing pain but since I have been doing physio regularly, I’ve seen improvements. I’ve started to step up the physio not only because of the pain but because I don’t want any further complications and seeing these improvements has made me realise how important it is to continue doing my physio. When I was 11, I had the conversation with my consultant about how my disability could affect me in the future and we discussed how I might end up having Botox’s. However, the next time I went he said that it would be unlikely that I’d need them until much later so with this in mind I just thought I’d keep doing what I’m doing because something was obviously working.

But I was a lot more active then I was still at school, therefore I was still doing P.E weekly, and a lot of extra activities outside of school. Whereas now, I’m not so active in my daily life because my circumstances have changed so therefore, that’s probably why I’m experiencing a lot more pain. A few weeks ago, I was meant to go to race running try outs unfortunately I was ill and couldn’t make it, I’m hoping that I’ll try out for it one day, I might not but it has certainly made me realise that I need to be more active. When I’m at university or on placement and have assignments to complete I do find it hard to make time for exercise and I don’t have much energy either. However, since I’ve been off and have had time to fit it in, I have realised how much I do need to stick to my physio in order to keep on track. If I do end up having Botox’s further down the line it won’t be the end of the world; right now, I want to try and prevent needing them whilst I can, and I intend to keep sticking to my physio. In September when I go back to university, I probably won’t do it as much, when I come home after a long tiring day; from now on, I am determined to incorporate it into my life as much as possible!

As I said, I haven’t decided to write this blog post because I want people to feel sorry for me but I’ll be honest right now as I sit here writing this post I am in a bit of pain (obviously my inspiration behind writing the post).However I don’t think my pain is anything to worry about for now and it’s highly likely that it’s probably just one of those days! But as I mentioned doing physio and looking after my muscles is certainly not an area of expertise.

So, how do you cope with pain?


Restricted Independence

Will I ever be totally independent? I’ve finished university for the summer now and I don’t go back until September- this means that I have a lot of time on hands and don’t get me wrong, I’ve spent most of my first 3 weeks off being run down. So, I’m certainly in need of a break but for someone who always likes to be busy I am scared that for the next 3 months I won’t be as busy as I want to be. This is due to having restricted independence. In my previous post about driving, I mentioned how much independence driving will give me and in this post, I’m going to explain why that independence is so important.

The whole point of this blog is to show you that having Cerebral Palsy doesn’t stop me from living my life- and it doesn’t but it does make everyday activities a lot harder! What I mean by this is that I can’t just hop on the bus to town when I feel like it, as I would need to have someone with me on the bus. Getting on the bus may seem like an easy task but when you break it down it’s actually quite complex and they’re many skills involved (I know because I had to do a group presentation on this at university). Therefore, this is not something that I am able to do independently. I still go out with my friends and socialise but if none of my friends are driving, this can cause quite a barrier! See, when I’m only going out for dinner I don’t need my wheelchair; this then causes issues because how do I get to the bus stop if I’m not using my chair? Which I know the answer seems simple just take my wheelchair but it’s not simple when you’re not used to using a wheelchair outdoors.

I’ve had an electric wheelchair 8 years now, which I know seems like a lot but when I break it down it isn’t because, for 7 of those 8 years, I just used my wheelchair indoors. It’s only since I’ve started university that I’ve been using my electric wheelchair outdoors; even still I only go around the university campus and then occasionally venture out to the nearby shops and that’s it, so my confidence is pretty low with my chair outdoors. I’m not scared but I’m still aware that I’m vulnerable! I have previously bought a new wheelchair so I do plan on getting out more over the summer- I have used it and for most of the time I was fine; I live on a hill so getting down my road is the hardest part! However, I am aware that I must work on this, and I am taking my new chair with me on my summer holiday in order to improve and build my confidence. But I’m still restricted, therefore, even though, I have the chair, it will be a lot easier to take it out when I pass my driving test and use the hoist because believe it or not my house isn’t wheelchair accessible! Which is fine because it doesn’t need to be otherwise, we would have moved; this means if my chair is in the house I can’t go out in it unless someone is around to help me get it out. I can get it out of the car now which is a lot better but, I still have the problem of the hill.

See, there’s so many factors to consider before I even leave the house- not making my life sound fun here, believe me I live a very fulfilled life! I still socialise with my friends regular but due to me finding the bus quite hard this results in us getting lifts or taxi, if they don’t drive, which works and has worked for quite some time now and I am grateful to have such understanding friends, but sometimes when I know that they’re forking out a lot more money for a taxi instead of a bus I feel a bit responsible. I also feel quite bad asking my parents to take me everywhere as I’m aware that they have lives too, this doesn’t stop me from going out, it just restricts me for example I rarely go and walk around town and not just because of the walking but, because its just such an awkward place! This also affects me when going on nights out as when I’m tired and not sober (not drunk either as previously discussed) I feel really vulnerable getting a taxi home alone. Luckily most nights out we either stay at someone’s house or I’m with my friend who lives round the corner so she always makes sure I get dropped off first but when I’m out with my friends from university, I have to get home on my own, this can be quite a stressful way to end the night because the taxi driver just assumes that I’m drunk. So, therefore this is restricting and I admit I have turned nights down with my university friends because I’m worried about getting back home alone.

I’m fortunate as I don’t feel that in my 19 years my disability has restricted me that much- I never when to the Friday night ice skating foam parties but apart from that I’ve have had a good go at doing everything else. I am also lucky to have always had amazing friends that understand that I can’t always do everything that they can do. I’ve talked about this before in the sense that it was hard when I came to and age and realised that I am restricted and I guess I worry about it now in terms of how it will affect future relationships (hopefully I’ll be driving by then). But I am only as restricted as what I allow myself to be, and as I’ve got older I have become confident and more determined to not let these restrictions take over; I am only 19 and I still have a lot more confidence and independence to gain and although I want to achieve this, this is not something that’s going to happen overnight. I am extremely happy with the life I am living and yes nothing has gotten or will ever get in my way; I’m still aware that my life would be different if my independence wasn’t as restricted.

Thank you for reading,


How My Physical Disability Can Be Perceived

As I am getting older, I am becoming more aware of the stereotypes that people make when initially meeting me. When it comes to stereotypes, I have mixed feelings, I don’t hate the fact that I get judged because that’s just part of life and everyone gets judged regardless of having a disability or not. But its the fact that the judgement comes from such of a little understanding! Now that I’m 3 months into NSTP I’ve made it clear that I ’embrace being disabled’- (a bit of a cliché) and I will never not want to be disabled because without Cerebral Palsy I would be a different person (and another). However, sometimes I can’t help to think that if my disability wasn’t at the forefront of everything do would the judgements not be as common?

For example, as previously mentioned my CP is pretty visible due to my walking and my speech difficulties, so therefore without knowing me or anything about CP its still prominent that I am disabled. Which is fine, this blog is not about being negative it’s just about making people aware that even though I don’t get down about the stereotypes it still doesn’t mean that they aren’t there. With my disability being so prominent judgements are certainly more common and people do perceive me in a different light, and this can be frustrating. I know this has always happened and is always going to happen and even though my disability makes up a big part of my personality there still aspects of my personality that don’t have disability running through it. So, I always wonder that if my disability wasn’t so prominent would this fraction of my personality come through more?

I am an ordinary 19-year-old that likes to go out with my friends, I know I have to be careful in the nightclubs due to my epilepsy; I can still have a good night. In the nightclub, stereotypes tend to happen the most and people tend to think that you’re ‘drunk’ or ‘high’. Due to these remarks, I feel the need to explain myself, which I know I should never feel the need to justify myself; I would rather people know my situation then think I’m high. The judgement about my CP after I’ve explained doesn’t get to me because I know that this can be a completely new situation to people and quite frankly if you can’t get over it, I’m not bothered. It’s just the presumption of I’m staggering in a club so I must be high or drunk!

This second assumptions it the one that gets some the most, so apologies if I’ve already mentioned this but it’s something that’s been happening for the last 3 years and to be honest I’m not sure that this assumption will ever disappear. At college I studied A-level maths so when asked what I studied I would just say maths and straight away people assumed that I was resitting GCSE maths. Therefore to stop people from assuming I would say A-level maths but then you still get the comments like ‘even I couldn’t do that’. This is because people see the way that I present myself and just automatically think that I have a learning disability and sometimes explaining that you don’t have a significant learning disability can feel like losing the battle.

Due to my CP causing mental fatigue I do have slight learning difficulties and I’m not denying that; my learning difficulties just mean that it takes me a little longer to read or write a piece of text that’s all. But still stereotypes are made and I can’t do anything about this, for the time being which I accept; on the other hand, there’s a part of me thinking its 2019! Why is it a big deal that I’m going on a night out? Why is it a shock that I studied A-level maths? I’m not writing the blog to show you how amazing I am and to show you what I can do in spite of my disability, I’m writing a blog to show you that I’m just an ordinary 19-year-old. I’m aware that the perception of my disability will probably never change. Does it mean that I just sit back and do nothing? No, because then how will ever know if they’re not shown? We’re all human we all make judgements that’s life but instead of just ignoring judgements and blocking them lets face them! I’m not saying start world war 3, I’m saying just question them because no one will get anywhere without questioning! We all get feelings that can’t be helped but we will never be able to dig the root of the feeling up if we don’t let it be found.

Thank you for reading, have a lovely Easter weekend!


Saying No Is Not Always as Possible as It Seems

At the moment, I am on my placement and going on placement and getting into a new routine has been extremely difficult as my body is adjusting to a new body clock! Therefore, energy levels are low and fatigue is making more of an appearance! Due to this fatigue, at times I just get more stressed because even though I need to look after myself and not do work, at the back of my mind I still know the work needs doing so fatigue levels may decrease but stressed levels increase.

Due to my CP it doesn’t take much for me to fatigue meaning that just having a full day at placement can really effect my energy levels. I always know when a break coming up because I become a lot wobblier! When I realised how the semesters worked at university, I began to worry that I wouldn’t make it till Christmas without having a day off. However, I wasn’t in university all day long, every day before Christmas and this really helps, as I think if it wasn’t for this I wouldn’t have been able to have made it to Christmas without becoming ill. Therefore my placement is not a worry because I know I can go 5 weeks without a day off but it is still stressful knowing that I need to get work done and then still be on top form in order to get the most out of my placement.

I feel like over the years I have gotten better at knowing my own body and I feel like once I figure out how to judge my own needs half of the work is done. Knowing when to rest my body is key and I have become a lot less tired now that I am more aware of how my body works as for me doing little and often works. I find that taking regular breaks works for me rather than just doing 5 hours none stop. Reading my own body does work well and I feel like this is a useful, skill for me too.

However, I certainly haven’t mastered knowing when my body needs to rest, and I don’t think I ever will as just a few weeks ago I was quite ill, and it was all stress and fatigue related. For someone like myself who always wants to be on the go all the time, masking this can seem impossible and saying ‘no I can’t do that’ can be hard. I previously have had to turn down something that I wanting to get involved in and turning this opportunity down was hard to come to terms with. But why worry and stress over something that isn’t a priority? I have taken this attitude on board a lot more recently and I have previously tried meditating which has worked for myself and it has made me realised that I don’t have to take everything on I can always come back to that opportunity I turned down. Meditation has given me a new perspective and has helped me to prioritise and realised that some of my worries weren’t worth worrying about.

Writing my assignments to a good standard as well as getting the most out of placement is still stressful but for someone like myself it will never not be stressful because that’s just, the way my body works. But this is okay a bit of stress and pressure is only normal and in fact others may say it’s healthy, just as long as I know when it’s getting too stressful. As you can gather I like to be at the top of my game but does it matter if I’m not on top of everything all the time I can always ask for an extension on my assignment the resources are there and even though I don’t like using them it doesn’t matter because I’m obviously entitled to them. So yet again why stress?

A few of you are probably reading thinking why am I blogging and adding more stress… But I’m not adding more stress as I sit here writing this blog I’m feeling less stressed because I’ve just put my worries into perspective. In fact I see blogging as I an opportunity wind down, and I have actually written quite a few of my blogs to help me wind down after a stressful day. Yes, I worry about my blog sounding right and making sure I have topics to talk but that’s only because I’m passionate at blogging and want to make a career out of it one day. But at this moment in time, I’m liking where NSTP is taking me and I’m not stressed because I can take control if a miss a week of blogging this really doesn’t matter all that matters is that I’m enjoying it. It’s so cliche but it’s true why take on board something if, the stress overweighs the enjoyment? Not So Terrible Palsy is certainly more fun than stressful.

Overall, I feel like I have really got into university life and haven’t had much trouble when doing my assignments due to my fatigue levels. But going on my week placement has been very tiring and working long hours every day has caught up with me but again for me this is all about knowing my own body again and compensating for this. My hours on placement have been long but once I get into the routine I’ll not be as fatigue some nights I might be too tired to do my assignments, but this is fine as long as I’m not getting behind.

It is okay to say no!

Thank you for reading,

The Extra Expenses of Being Disabled

As I’ve got older. I have come to the realisation that due to my Cerebral Palsy, there’s a lot of self-care activities that I can’t do that a girl my ages does, for example, painting my nails and doing my eyebrows. I have accepted this as I’ve never really known any different, but for me, the acceptance isn’t the hardest part, it’s the fact that these difficulties come with a cost…

I pay to get my nails and eyebrows done, this is because this gives me a bit more normality and by doing this it helps my self-esteem. My self-esteem isn’t low because I feel as though my nails need to be done to regain some femininity. It’s because when I’ve got to ask my mum or my younger sister to help pluck my eyebrows it can be quite embarrassing so, therefore, getting them done professionally is a lot better for my self-esteem. I don’t have an issue with going to a professional because today this is seen as the norm however, most people get their nails done just because they want them done not particularly because they can’t do them.

However, to live life this way it comes with a cost and I am fortunate enough to be able to afford these costs. Come to think of it over the years I have taken the expensive option a lot to accommodate my needs…

Staying with the theme of beauty makeup is also something that without a disability comes with a cost so when you add fine motor difficulties to the mix products and brushes don’t last as long as, they should, yet again increasing cost. I often have to buy expensive brushes due to me being heavy handed as if not they don’t last as long without becoming worn. I also find that I get through make up a lot faster due to my jerkiness as I very often than not drop my makeup resulting in powder being smashed. Another daily task that is affected by my heavy hands causing an increase in cost is brushing my teeth. I find that due to my lack of control I go through toothbrushes more often again increasing expenses.

When I was younger, I had to wear either splints or inserts, meaning school shoe shopping would be done with great difficulty. I never hated my disability but I never embraced it either, so shopping for school shoes was hard because I just wanted regular and pretty shoes. But again, to have an ordinary looking pair of shoes that fitted my inserts and splints would mean that my school shoes came with a price tag. Yet again this was an important need for me enabling me just to be an ordinary child at school despite my differences.

I often chose the expensive alternatives when at restaurants as well. This is for not just one but two reasons, when picking my food out from the menu I try to look for meals that one I don’t have to ask for help with the cutting up (which depends on who I am with) and two are easy to eat. For example, making sure that there are no sauces that I could potentially get all down my clothes. Of which sometimes does result in me choosing the expensive option to reduce my anxieties when eating and to make me feel more at ease, especially when I’m eating in front of people I don’t know very well.

I’m not materialistic and I am grateful that my parents could afford these expensive options I am fortunate that I still can afford these. But why should I have to pay more out due to my needs and difficulties?

Thank you for reading,

Georgia Vine

Unexpected Battles

This week I’m turning 19 and around this time of year, I often find myself and my family asking the same questions. If I was born on time would things be different? Was it due to the fact I wasn’t born early enough? Was I born too early?

I often wonder what my life would be like without Cerebral Palsy. Would I be more independent? Would I be at university studying occupational therapy? But the biggest question I ask is… Would I have faced as many battles and so many long processes just to get to school or to university? These ‘unexpected battles’ as I call them, can be really frustrating at times and are difficult to accept.

Growing up in today’s society means that we have particular expectations of how our future is going to play out. For example, I just expected that I’d eventually learn how to ride a bike on my own. When secondary school came, I just expected to be more independent expecting that I was going to get myself to and from school and when I thought of school, I saw myself walking around and not driving around in a chair. Just before my 17th birthday, I applied for my provisional licence thinking I’ll have a few lessons and then be driving within the year. Whenever I thought of university, I didn’t ever think about living at home I just had my eyes on the halls of residents.

When these life stages don’t play out the way I think they’ll play out and I’m faced by yet another ‘unexpected battle’ interpreting the situation around me can be hard. Some days I wish that I could have passed my driving test by now and be staying in the halls of residents and when I reflect on how much of a different journey I’ve taken. I realise how significant these events are. Event’s like this are major learning curves that help me to make sense of my journey and be prepared for future crossroads that are due to arise.

What I’m going to struggle with and what I’m not going to struggle with is not set in stone. Sometimes I don’t realise that the hurdle in front is a bit higher than the previous, and when I look around to see that my hurdle is bigger than not just the one behind but bigger then everyone else’s it can be a lot to take in…

But there’s always a way over that hurdle and with enough willpower you can not just jump over it but you can knock it, down!

The bigger the hurdle the more worthwhile the rewards and when I have faced that hurdle for longer than anticipated getting over it gives me the best feeling.

So, the answer is I don’t know, and I’ll never know how different my needs would be if I wasn’t born when I was. But what I do know is that if I wasn’t born when I was, I wouldn’t be the person I am today. Down days are going to come and go because that’s life and we as humans have psychological needs for this. But just because I have one down day and one occasional fatigue day, doesn’t mean that I want CP to go away.

I often get asked -’If you could have one wish would you wish for a life without CP?’ The answer is no. Would I like to experience a day without CP? Certainly. Do I wish I could get over hurdles as easily? Of course, I do. But this doesn’t mean I want CP to go away it just means that at times I want things to be easier. I’m fortunate enough to have had a remarkable life so far with CP and have been given more opportunities like writing my blog today because of my CP.

My life probably would be different and the battles I have faced probably wouldn’t have been there but I wouldn’t want to change this. I’ve realised that at times I’ll never be prepared for how big the hurdle is but if I get over it that’s all that matters.

Thank you for reading,

Georgia Vine

How the Straw Ban Effects Me!

I wanted to talk about the straw situation because it’s something that’s relevant and is affecting the disabled society today however only people who use straws are aware of this situation. Many people who don’t rely on straws aren’t aware of the importance of a plastic straw. I know this first hand as when I was discussing the disabled culture during a seminar at university and talking about how banning straws is affecting the disabled culture, I got a lot of blank faces. But when I discussed this situation, I realised that the blank faces weren’t due to them being stubborn it was due to the fact they didn’t have any understanding and as I was explaining this issue, I could see a lot of faces changing.

I do use straws a lot due to my disability and the ban on plastic straws is affecting me. But it’s not just the ban of plastic straws in restaurants that’s frustrating it’s the lack of understanding and how straws are talked about like they’re some decoration in your cocktail when in fact they provide much more! Therefore, I feel like they only way that people will become aware of this issue is to talk about it and to carry on talking about it. I’ve read a lot of articles regarding this issue and I do think that by sharing experiences and opinions we will get somewhere. However, when this was first mentioned, and straws were shown on TV saying how irrelevant they were I will never forget the lack of consideration I felt as a disabled individual.   I’m all for helping the environment and I know something needs to be done about the amount of plastic waste, but I don’t think using the blanket technique will work.  If I didn’t rely on straws, I’d have no issue and I’d easily stop using plastic straws, but with my needs, it’s just not that simple.

I have purchased some silicone straws and I have started using them because you don’t know unless you try, and I get this however there are some straws that I don’t want to use. For example, mental straws have been recommended but I’m cautious to use them, this is because due to my cerebral palsy I grind my teeth and as a result of this I have to wear a soft retainer at night as my teeth are more worn than they should be for someone of my age. Therefore, I don’t want to use mental straws as my movements are very jerky due to ataxic features so I’m avoiding using mental straws because I don’t my teeth to be affected anymore after having an operation and wearing braces for 20 months.  Paper straws also do not work for myself as they disintegrate and whenever I use paper straws, I have to use 2 or 3 just for 1 drink due to the fact that I saliva more than others. So, therefore, I feel like I’m doing more damage to the environment as if I was to use paper straws, I would be using more of them than I would plastic.

My silicone straw is good, and I do feel that for now, this is the best alternative for myself however I’m still not as happy silicone straws as I am using plastic. This is because cleaning the straws is proving quite difficult for myself as I struggle with fine motor skills and the task of the cleaning the straws definitely requires fine motor skills and I just know it won’t be much longer before I break the brush and will be ordering another one.  Not only this remembering to take a straw out with me is yet another factor that I must incorporate into my daily life! This may not seem a big issue, but hasn’t a disabled individual already got, enough needs and vulnerabilities to worry about?

Thank you for reading,

Georgia Vine