Author: Georgia Vine

I have Cerebral Palsy which affects all 4 limbs and my speech. However I never let my disability get in my way I am always to determined to face whatever challenges life throws at me! I am an occupational therapy student and an ambassador for CP Teens UK seeking all opportunities to create a link between occupational therapy and blogging. I don't know if this will be successful but I'm going to have a good try at it and I can't wait to see where this journey takes me!

Reflecting on My First Year at University

As previously mentioned, I have now finished my first year at university so, seen as I mention university a lot throughout my posts I thought I’d reflect on my first year to give you some insight on my experiences this past year. But first, I’d just like to say how I can’t believe that I am writing this blog already, well, I could have even written it a month ago! How scary is that? I still feel like a new student! Speaking of how fast time is going last week marked 6 months of Not So Terrible Palsy, now that has gone fast!

I’ve always known that I wanted to go to university from a young age and when I saw photos of my older cousin’s graduating I knew then, that, I wanted to wear my own gap and gown one day. So, when university finally came around in September 2018 although I was nervous, I was certainly more excited as it felt like I’d been waiting for the day to arrive ever since I saw my cousin’s graduation photos! I remember being sat in the lecture theatre thinking I can’t believe that I’m sat here and to be quite honest when I sat in a lecture theatre now, I’m still in disbelief.

However, as I said, there was still a lot of nerves and I still had a few worries as I’ve previously discussed when talking about my wheelchair and placement. I also had worries about making friends because even though I’m a very sociable person I knew that due to my circumstances, I wouldn’t be able to make every night out. But the biggest worry was would I be able to cope with the work? Would I actually be able to do a degree? Which I know seems dramatic; I still had to be real with myself and face reality even if that would be the case. However, this question didn’t come from my own doing this question came from the doctor at my occupational health appointment which I had to have to ensure that I was fit to go to university. I remember him asking me all these questions such as ‘’What would happen if a patient asks you to do something that you can’t do?’’ and to be fair I do have to be realistic and seriously consider which job I want to go into within occupational therapy but I was very distressed after this appointment. This was because I’d been getting so excited about September so when this appointment didn’t turn out how I thought it would turn out I was quite disheartened.

I knew that I was going to struggle a lot more than an able-bodied person; I just had to be more prepared. I remember how daunting my induction day was and to be honest, I didn’t have the greatest day and felt really overwhelmed but then that changed at the end of that day when the lecturer came up to me and said ”Georgia don’t worry we are going to prepare for the hard parts”. This conversation meant a lot to me and was probably the highlight of my day that day. Following this my now lecturers had arranged a meeting with my mum and myself to plan ahead and from this a lot of my worries were dealt with including a big one about not being able to do certain practical elements in which it was decided that before any practical lessons I would have a practice first on my own to save me some embarrassment. This was the perfect solution! For example, as part of my preparation for placement, I have to undertake mandatory training and as part of this, skills such as manual handling are required so, it was fair to say that I was pretty nervous starting the course off with something that I may not even be able to do. But my worries were completely taken care of as we’d come up with a plan to have a go at the manual handling by myself first which made me feel so much more at ease because I knew what I was expecting when the time came to do it alongside my peers. I still can’t thank my lecturers enough for doing this. I wasn’t the best at it but with a few practices, I was improving!

I also was really worried about the workload… Would I have enough energy to make sure that my work was up to standard? My course is all assignment based which works best for me as I’m certainly that person that crumbles under the pressure of exams; I was still worried about being able to write high-quality assignments. I guess everyone has this worry but as I mentioned for me it was also about being able to cope with the workload making sure that all my assignments had the enough amount of time spent on them as it can take me twice as long some days depending on energy levels. Now that I’ve submitted and received feedback from all of my assignments, I am pleased with the work I have done. Some assignments are better than others, so I need to work on this therefore I have been doing a bit of work on these skills during my time off whilst I have time because come September it’ll be harder. I mention this so often but I have to know my body and I know it will be hard to take extra classes in September that’s why I’m doing it now whilst I have the time to put all my energy into it!

My last worry was about living the ‘student life’ which I have mentioned a few times before. I was never worried about making friends one because I’m very sociable and can talk to anyone and two because the course was occupational therapy so, if people weren’t going to befriend me because I’m disabled, they should probably reconsider their degree. I made friends fine and I get along with everyone on the course I mean I don’t talk to everyone but not because we don’t get along but because that’s life. However, this still didn’t stop me worrying about trying to live to ‘student life’ knowing that I live a 20-minute car journey away from the rest of my friends. But as far I’m concerned this hasn’t affected me that much, to say it hasn’t affected me at all would be a lie as I’ve previously talked about; this isn’t because I don’t get invited.

Overall, I feel very fortunate to have had the most amazing first year of university which is full of memories from some great times both in and outside university. My worries a year ago now seem so small I will always worry about my work at university because that’s the person I am but apart from that everything else didn’t seem worth the stress. University will always be harder for me than an able-bodied person because that’s the way the world was designed but it still doesn’t stop me from loving it because I certainly love what I do. Roll on second year!

Thank you for reading,

Georgia
@georgiavine4213
@GeorgiaVineOT

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,

Georgia
@georgiavine4213
@georgiaanv

My Driving Journey So Far

Welcome to my driving blog post, despite saying that I wasn’t going to write this post, 2 weeks later here I am… I’ve received a few comments saying that people would like to read this blog post as they find it very useful and insightful. Which made me think that, if I’d had read a blog post about someone’s driving experience when I was 15 then I would be a lot further in this journey. So, here it goes, put your seat belt on (pun intended) because this is quite a story!

When I started to plan for college at 16, I realised that what I’d always known was about to change, because my timetable wasn’t 8:30 am-3:00 pm every day so, therefore, my parents could no longer drop me off and pick me up. This meant that I would be getting a lot more taxis and at this time the thought of being in a taxi alone made me feel vulnerable. But then I had a thought, I thought I’ll start driving lessons soon and then in the second year I’ll be able to drive, which of course made me eager to start driving. So, 6 months before my 17th birthday I applied for my provisional license, my 16-year-old-self thought that it would be enough time to get the ball rolling, not knowing what was ahead.

The first hurdle- as previously discussed as a result of my Cerebral Palsy I have epilepsy, which didn’t make getting my provisional license easy, despite not having a seizure in 12 years. But, after filling out multiple forms, 3 months later my provisional license came. This process itself took a lot longer than anticipated and started to make me realise that this course was going to be more complex than expected but, it didn’t fully prepare me. As soon as my provisional license came, we started looking for a disabled driving instructor knowing that I’d probably need a little extra support. So, after another few months of phone calls, I finally had my first driving lesson 2 days after my 17th birthday. Again, we didn’t think it would take another 3 months on top of this, and had hoped that I would have had a few lessons by this point as with being disabled you can start at 16, (clearly something I didn’t know). But I didn’t mind, it felt right as I was starting around the same time as my peers and I was where I wanted to be.

My first lesson was meant to be 2 hours but after an hour I was on my way back home as we discovered that I needed further adaptions. The next stage was to go to a centre to be assessed so, my report came through from my driving lesson and a date was made to go to the assessment centre. I was waiting to go to the assessment centre for 5 months’, but I didn’t mind because this was over summer so, I could start over summer when I wasn’t at college meaning that I could have more lessons and speed up the process. Over this period, I was told to start revising for my theory test so I did, luckily I didn’t book anything before knowing the outcome of the assessment but I thought that if I was being told to put in for my theory then it couldn’t be much of a wait.

The day had finally arrived, I was going to the assessment centre and I thought that I could see light at the end of the tunnel. The day was a very long day, the assessment centre was quite a drive away as well but, I was prepared for a long day! So, the tests included trying different adaptations as well as having reading and cognitive test you name it, I had it, and as you can tell, it was quite a draining day so I slept most of the journey home. We’d concluded that I was too weak in my legs to be able to use the break and accelerator, so we explored alternative options one of them being a lighter steering wheel which had the break and accelerator attached to the wheel. So, this assessment was useful because from this we discovered that I couldn’t use my legs and that I was cognitively able to drive; we’d not found a way for me to drive. I came out of the assessment feeling deflated as this was the first time that I’d realised that I may never be able to drive. Side note, this assessment was carried out by an occupational therapist- just thought I’d mention it!

From this, I was then referred to have another assessment with a driving instructor, the wait for this assessment was only a month and during that time I was all ready to go on holiday and just forget about driving. Once again, the day came, but this time I wasn’t that excited as I didn’t want to get my hopes up for them to be demolished again. However, this assessment turned out to be the best one as we managed to find an adaptation that I was able to use- a year later and things were finally looking up. The adaptation I found was the tiller which, works a bit like the handlebars on a bike.

I was going to insert a video but the video I have is me using a different adaptation- I tried so many!

So, it was decided that the tiller would be the adaptation I was using! However, this meant more waiting! This was because at the time there was only 2 van’s in the country fitted with this adaptation for learner drivers, therefore, this meant that if I was to have this adaptation I would have to have my own vehicle adapted first before I learnt how to drive. Which resulted in more assessments to ensure that this was the right adaptation.

With a load more of phone calls, emails and letters another 6 months went by. The guy that came was lovely and he walked in and straight away said ”You’re going to get this adaptation, our number one priority is to get you driving.” – relief, I’d not waited another 6 months to get rejected. Just an update for those not counting, the total I’ve been waiting at this stage from applying for my provisional license is now 18 months. Now, it was time to hunt for cars, quite exciting, although my options were quite limited- this is because I needed a car big enough for a hoist for my electric wheelchair, however, a lot of the bigger cars require someone over 25 to drive them so, I had very few options.

A few months went by, and we’d picked a car and got the ball rolling, little did we know that our plans were about to get knocked back again… The plan was to get the car and then send it away for it to be adapted with the tiller; that plan didn’t take off as quickly as expected as the company were having trouble getting hold of the car so we had to wait until they could get hold of the car because as mentioned all the other suitable cars required the driver to be over 25. So, at this point I’m thinking I’ll just have to wait until I turn 25 before I can drive, thinking that, that was my only option. Fast forward 4 months and we finally have a car and the adaptation process begins! At this point, I was going back a forth a bit to have fittings. Once again, the car took a lot longer to be adapted than we thought, but it had to be perfect even if that put another 4 months on!

During this time, I decided that it was time to do my theory- good job I didn’t do it 2 years ago when I got told to! So now that my theory was done, I was just eager to start driving lessons, but there was nothing I could do apart from wait – I’d played my part at this stage.

We are now up to date 34 months later! I finally have my car and have started my driving lessons! This unexpected battle (which is the phrase that I often use) has taught me a lot and even though I’ve spent the majority of these 3 years being very stressed and frustrated with the process this has been a massive learning kerb. My life is always going to be full of unexpected battles it’s just part of CP, and even though this is frustrating it only makes the result more worthwhile. After all this waiting I’d be lying if I said I that I don’t want it to all be over and to pass my test. But doesn’t everyone? Driving will be great for me as it’ll give me much more independence as it doesn’t just allow me to go to place’s, but it allows to go to places alone because then I can go in my chair! So, it will be worth it, in the end, but at least now I can wholeheartedly say that I can see the light at the end of the tunnel!

There have been so many people involved in this journey that I would like to thank! I would also like to thank my parents for literally spending days on the phone because if it wasn’t for their hard work I wouldn’t be at this stage!

I’ve previously discovered that you can apply for your provisional license from the age of 15 and 9 months so if you’re coming up for this age get applying! I wish I’d have known that!


Thank you for reading,

Georgia
@georgiavine4213
@GeorgiaVineOT

No Longer Being the Only Disabled Member of the Family

Welcome back to another blog post! This blog post is a family post- yes this is my third family-related post within the last 3 months. However, my family is a very close family and they have always been very supportive of me so I think they deserve a bit a credit because I wouldn’t be here if it wasn’t for their support! But this blog post is about one member of my family Tommy, one of our new additions, (I can’t say the newest because that would be a lie- my family is quite big) who has Down’s Syndrome. I wanted to write this blog, to share Tommy’s and Tommy’s family’s story and to talk about how this affects me as another disabled member of the family.

So, let’s start at the beginning when my cousin found out that she was pregnant (yeah, it’s going to be a long post again- sorry) …

This is my cousin and Tommy’s Mum- Amanda.
This photo was taken a few weeks before we found out Amanda was pregnant.

You’re probably thinking why I am starting from before Amanda got pregnant- but I do have my reasons! Last year was a very difficult year for my family, especially for Amanda so when we got the news that Amanda was pregnant it was a blessing and it was certainly the good news that everyone needed. However, when we found out that there was a 99% chance of this baby being born with Down’s Syndrome our excitement soon turned into worry.

When I first heard the news, I wasn’t sad because I for one know that disability isn’t the end of the world; I was worried because Down’s Syndrome can come with a lot of health complications, so it was fear of the unknown. However, I knew that I had to step up and be a good cousin. My sister, my parents and I all felt responsibility now as we were the only ones in the whole family that dealt with disability daily. As previously mentioned my family are a close unit so I feel responsibility whenever I get a new cousin but now I just felt like that I needed to be the best cousin I could possibly be and not just for Tommy but for Tommy’s brother Charlie, Amanda and her husband.

I started thinking of ways in which I could help my cousin’s out, and I remember subscribing to Down’s Syndrome on The Mighty and sitting there trying to figure everything out. But the answer is I didn’t need to figure anything out because Amanda was just amazing and before I knew it she’d started her own Instagram page named My Upside Down Rainbow. Amanda’s page is just incredible, I am so proud of her for starting this page. As a disabled activist, I’d already recommended a few sights like The Mighty that she should subscribe to, but I didn’t want to enforce this too much as everyone deals with situations in different ways. But the awareness that Amanda has raised and continues to raise is huge and I couldn’t be happier to welcome my cousins to the disabled activist family. I am so proud of Amanda for how far she has come and for raising this awareness.

Tommy has been in our lives for just over 3 months now and what an incredible 3 months they have been we learn from Tommy every single day he encourages me to explore things that I’ve never explored and to be a better version of myself. For example, I had my first Makaton lesson a few weeks ago and if it wasn’t for Tommy, I would have never have actively done this. I’m interested in Makaton and of course as a student occupational therapist I think this is very important, but I would have never done this in my own time. I’m not a Makaton professional or anything as due to my fine motor skills I find it quite difficult (the man who was teaching kept looking at me and I could sense that he thought I didn’t know; I just struggled to perform the actions) but the point is Tommy inspired me to go to Makaton and I’m thankful for this even if I did look like a bit of lost soul.

But it’s not just Tommy that inspires me Amanda also inspires me too (I know I know, the dreaded word that’s used too lightheartedly but I do have a point to make). Previously she posted this photo of Tommy.

This photo is adorable every time I see a photo of Tommy I just want to shout, ‘He’s my blood relative’, but it was Amanda’s words that made my day that day. Amanda wrote:

‘ ✨If you could wave a magic wand, what would you change?✨
.
When it comes to Tommy, we really wouldn’t change a thing. This may be a strange concept to someone on the outside who may think surely, you’d remove his Down’s syndrome if you could? You see, if we did, he wouldn’t be the Tommy we know and love, he would be another different baby. Our journey may have been a bit bumpy but it’s made me love him more fiercely. He does not suffer with Down’s syndrome as some people may think. His extra chromosome is intertwined in every cell in his body and makes him who he is and he is pretty happy with that.
.
.
I would only change the world to be more accepting of those who are different and change the negative misconceptions of Down’s syndrome.’

I’ve been writing pieces on disability for 2 years now; even I don’t think I could have chosen words that fit so beautifully than the words that Amanda chose here, and for that, I am beyond proud- this is inspirational. The term Down’s Syndrome was only mentioned to my cousin and her husband 9 months ago and yet they already have this view, and this is inspiring. I’m 19 and yet it was only 2 years since I adopted the view of my looking at my disability in a positive light. In my blogs, I often discuss how my disability is a strength but not everyone has this view, and this is okay this isn’t bad. Some days I can be doing something, and I really want my hand to be steady for a few seconds or I want my legs to not ache. These days are entirely normal, I have now at the age of 19 accepted that I don’t ‘suffer’ from Cerebral Palsy, so I think is it inspirational that Amanda wrote these words at such an early stage.

First time I held Tommy. Side note- ignore the ridiculous eyebrows we all know I struggle as previously discussed.

Tommy and I already have a great bond because we have something in common that no-one else in the family can relate too. I know Tommy is going to grow up and achieve wonderful things because like me he has the most amazing support network behind him. I hope that I can help Tommy not just as a fellow disabled person but also as an occupational therapist- but what I do know is that I am looking forward to being involved in Tommy’s life whether it be as a person with a disability, an occupational therapist or a cousin. He’s already made me a better person and taught me so much and I just can’t wait for the future (well I can wait till he becomes taller than me).

Charlie reading his little bro a bedtime story.

Much love to these amazing people, I am so proud to call you all family!

Thank you for reading!

Georgia
@georgiavine4213
@GeorgiaVineOT

Why I Study Occupational Therapy

I have been considering writing this blog for some time now and this is for two reasons. The first reason being that I just feel that I need to explain why I was drawn to occupational therapy and the second reason being to discuss my future with occupational therapy. But on the other hand these two reasons were the same reasons why I didn’t want to write this blog as I shouldn’t feel that I need to justify why I study what I study and I didn’t really want to discuss my future without knowing what the future holds. Then I realised that this blog post would be a great blog post to refer back to in the future and could potentially be a learning kerb so I thought I would give it a go, and at this minute whilst I’m sat here writing this I don’t know where this blog post is going to end up! So just stay with me because I do have a point or two to make!

Here we go point one and before I make this point, I am sorry if this comes across in a controversial way but this is a question that I have been meaning to answer for quite some time. I’m not going to bore you with all the reasons why I chose occupational therapy and why the course stuck out for me. But just for a bit of background information – occupational therapy was the right course for me as I’ve always wanted to explore the field of healthcare. OT also entails a lot of problem-solving as sometimes with occupational therapy the answer isn’t right in front of you so seen as I love maths (sorry I’ve mentioned it again) this felt great! Not to mention that the signature colour for occupational therapy is green just like CP I mean can it be more perfect!

However, the aim of this blog is not to rewrite my personal statement the aim is to answer a few questions that I have been asked around occupational therapy since starting my university journey. So, let’s get the big question out of the way… ‘Why go into the system when you’ve just come out of it?’. I have been asked this question few times, sometimes it hasn’t been as direct as others but I’m capable of reading between the lines. I find this question quite annoying especially when it’s someone I’ve just met because it just makes me aware that I am probably never going to stop answering this question. Apart from the fact that I might not even go into the system (which relates to point two), the thought of potentially going into the system and changing people’s life makes me feel even more determined to complete this course. This is not because I want to change the system. A big reason why I want to go into occupational therapy is because when I was younger my occupational therapists were just phenomenal and they played that much of significant role in my life, that they inspired me to go for this career. If I can make half the impact on an individual that they’ve made on my family and I then I know it is all worthwhile.

The other questions I have been asked, have been around my capabilities within occupational therapy, these questions don’t annoy me as such because yes, my disability will always be the elephant in the room; again, this is based on so little understanding. Occupational therapy is such a board profession as you could be working in a clinic or hospital or you could be working in a driving skills centre. So, I think eventually I’ll find an area of occupational therapy that I want to work in, I’m not saying that it won’t be harder and that my options aren’t limited because it would be wrong of me to think that they weren’t. But I know that there is certainly a role in occupational therapy out there for me, that works with my needs.

This then links on to point two… I’m only in my first year at university so I don’t have my heart set on an area of occupational therapy just yet but I have a better idea of what areas I want to and don’t want to explore than I did a year ago. A few weeks ago, I did a presentation about my blog, I wanted to make this presentation slightly more interesting and wanted to talk about more than just blogging. For a while now I’ve said that I’ve wanted to link occupational therapy in with blogging, so I had the idea of doing research about the impact of occupational therapy online to incorporate this into my presentation. Then after researching, I found that there wasn’t much around this, and I realised that this maybe the area suited for me.

As you probably know if you follow me on Facebook this presentation was done recently therefore, I haven’t really had the chance to investigate this any further. However, prior to this I had also had a discussion with my university lectures about linking blogging in with occupational therapy, and from this, they had advised me to write this blog. I’ve been towing with the idea of writing this blog for sometime now because I didn’t want to tell everyone about my future in occupational therapy without knowing what would happen. I asked myself a lot of questions around this with one of the big ones being ‘Where am I going to start?’ and therefore I decided to write this blog because this is where I am going to start. I can’t start something without a general idea of where it’s going to go just like I’d built up my work online before starting Not So Terrible Palsy. So, this is me starting my journey within occupational therapy!

You’re probably thinking why this blog is named Why I Study Occupational Therapy and why did I talk about this if this is not the main reason why I wrote this blog. This is because the reasons for studying occupational therapy is also listed in point two as well as in point one, even if it doesn’t seem apparent. In my first blog post, I wrote ‘I believe that I was born with Cerebral Palsy for a reason’ and from my previous work, I’ve realised this reason could be to create a link between the online community and occupational therapy. I study occupational therapy as I can bring to the table my personal experiences as well as professional experiences and this how blogging links into it even if this link isn’t visible yet. So, now that I’ve almost finished my first year, I can finally say that I know all the reason’s I study occupational therapy and why I’m more than willing to go back into the system!

As previously mentioned, I don’t quite know how and if this idea will work but what I do know is that I am very determined to get my idea off the ground!

Thank you for reading, I did warn you that it might be long!

Georgia
@georgiavine4213
@GeorgiaVineOT

Having a Little and a Big Sister!

This blog is dedicated to my sister, best friend and the reason behind the name of my page, Matilda.

As I have gone into occupational therapy and have got older, I am more aware that having a disability has an effect on other non-disabled siblings and I know that over the years my needs have meant that I have had to have more attention than my sister. But I’ve never heard Matilda complain once about this! Matilda does things to help me that I could never do for her, this is a bit disheartening at times because I’m the older sibling and I should have been the one looking after her instead of her looking after me; this has only brought us closer together. There is 15 months between myself and Matilda, which meant that due to my CP we reached quite a few developmental milestones at around about same time, for example walking and due to this, it made us closer. Matilda and I have always been close, and we always will be, but we are closer because we’ve had to deal with quite a lot, some of which most sisters won’t have to deal with in their lifetime, therefore these experiences only make our relationship stronger.

As a young girl I’d always envisaged that I’d be the one doing Matilda’s hair
and makeup, and that I’d be the one painting her nails; then I came to the
realisation that, that was never going to be reality and that in fact, it was
going to be the opposite. Matilda has always helped me to achieve these activities rather
me helping her, and I will never forget this. Rather than me teaching her how
tie her shoe laces she taught me, and she would always stop to watch me try and
conquer whatever task big or small, even coming up with ways to make the
task easier! Just recently she bought me chunkier brushes to help me with my makeup,
she saw me struggling and then acted upon this, and I will be forever thankful
for this. These little gestures mean the most. The police came into her college
recently and did a talk about safety regarding contact-less cards, and they got
given a cover to protect their cards; Matilda came straight home and said that I could
have hers because I’m a much more vulnerable target. She thought of me and put my
needs before her own, she probably thought this gesture was nothing, but that
gesture made my day that day.

I’m lucky to have this amazing support network around me, with all my family members not just my sister; I don’t give Matilda enough credit, she never asked for this life! Yes, I understand it’s a different situation because she’s never known any different, but I will still always appreciate how she’s dealt with what’s been thrown at us. Having a disability doesn’t just affected me it’s affects the whole family dynamic; Matilda has just accepted this dynamic and embraced it. Yes, at times, I may make her do my makeup when it’s the last thing she wants to do, but we make this fun she always finds a way to distract me so that she can do my mascara and those fiddly aspects! At the end of the day she takes my bracelet off and this is means a lot to me, more than she will know. I studied psychology at A-level and Matilda is currently studying psychology and whenever she  asks me for help with revision, and I get excited than most because I am actually helping her with something.

I am very fortunate to have a little and a big sister all in one as not many people can say this! I have always used this term and Matilda uses this term for me too as it does tell people a lot about our relationship, however our relationship isn’t just made up of Matilda helping me out, we do have laughs and jokes too just like a normal sisterly relationship! We do spend a lot of time together, and like any other relationship our time a part is good too because we still have our disagreements. I know that at times I perhaps rely on Matilda to much; then other time she can almost insists ‘Georgia just let me do that’ (knowing full well that I’ll be trying for half an hour). I’m so thankful we’re close in age as I don’t remember life without my sister helping me, even though I do wish I could be more of a big sister to her, I wouldn’t change our relationship because this is what makes our relationship mean so much. Matilda, is the first person I talk to in a morning and the last person I talk to at night, and I wouldn’t have it any other way!

Thank you for reading,

Happy early 18th birthday sis, can’t wait to take you for cocktails!

 

Georgia
@georgiavine4213
@GeorgiaVineOT

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!

Georgia
@georgiavine4213
@GeorgiaVineOT

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 a successful 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,
Georgia
@georgiavine4213
@GeorgiaVineOT

National Cerebral Palsy Awareness Day 2019!!

A few weeks ago, I realised that I’ve never shared my story on NSTP so I thought it was time and I couldn’t think of a better time than National Cerebral Palsy Awareness Day.

I was a premature baby by 5 weeks, it was apparent from birth that something was wrong as I was in intensive care for 2 weeks and during this time, I was having regular seizures. I eventually got my diagnosis of spastic CP when I was 18 months old with my official diagnosis being Spastic Diplegia Cerebral Palsy with ataxic/ dystonic features however as my parents had no experience with CP they didn’t know what to expect. It was more apparent as to how my CP was going to affect me when my younger sister was developing faster than me. But my parents were very determined to help me, for example, making me walk and doing my physiotherapy with me, I believe if it wasn’t for them, I wouldn’t be able to achieve the things I’m doing today.

So once I was diagnosed, I was obviously back and forth to the hospital. CP affects me in all 4 limbs, pelvis, trunk, head control also my speech is affected. My cerebral palsy affects both fine and gross motor skills, I can walk short distances like around the house but most of the time I use either a manual or electric wheelchair.

I always have kept active doing dance lessons, drama lessons, swimming lessons, tennis lessons, horse riding and wheelchair basketball. I have never let my disability stop me as you can tell from this list. Some days are good but others my CP really gets the better of me and I struggle just to do a simple task as I can use up to 5 times as much energy as most people, so it is very tiring at times. I do get frustrated at times when I can’t do my hair or put my jewellery on but am I very lucky to have my family help me in do these little things.

But even though my body doesn’t function as easily as others it doesn’t stop me I am currently at university studying occupational therapy, of which I would have never chosen this career path it wasn’t for my previous experience with OT. I’m loving life at university and I believe that occupational therapy is the perfect course for me. However, at times I do wish that I was able to live more of the ‘student university life’ as being so dependent on my parents means that living in halls would have been extremely difficult for me as all my energy would have gone into looking after myself rather than focusing on my work. I still go on nights and days out with my university friends although I do wish that I could go on a night out more often as there have been a few occasions where I’ve had to turn a night out down due to fatigue.  Not only this but as a result of CP, I also have epilepsy, so I must make sure I’m fully fit for a night out.

Having CP means that a few hurdles crop up when least expecting, but with the right attitude and determination, I will get over these hurdles. I am lucky to have a very supportive family that are behind me 100% as some days even though I don’t want to admit it I do need help.

CP awareness month means a lot to me as it gives me the opportunity to write blogs like this because people often think that as a result of my CP I just get more fatigue- when in fact it’s much more complex. I also love this month as then I can read other stories about CP and learn a lot more as no 2 people with CP have the same needs. I wanted to share my story to enable people to get a glimpse of what goes on behind closed doors. I consider myself extremely lucky that my disability isn’t life-threatening and that I am able to live a fulfilled life however I still face challenges daily. Facing these challenges can be frustrating but I would never choose a life without CP as without CP I wouldn’t be the person I am today.

Happy CP awareness month 2019!!

Thank you for reading I hope I have given you just a little bit more insight into Cerebral Palsy.

Georgia
@georgiavine4213
@GeorgiaVineOT

Cooking Dinner!

Challenge 4!!! Can’t believe we’re at the final challenge already!!! I decided to set myself this challenge, this is because cooking is a life skill, therefore, I thought it would be useful to know what I can and can’t do within the kitchen to adapt for the future. Whilst cooking I did think of ways things ways to adapt, so this challenge has been the most useful learning kerb.


Some aspects of this process were more difficult than others, and peeling the potatoes was by far the hardest. I was very slow at peeling them and as you can see, I was peeling off very fine pieces, it was hard to keep the potato still even though I was doing it on my non- slip matt. However with many thanks to my mums suggestion we did come up with a solution of stabbing the potato with a fork whilst peeling to hold it (I was annoyed I didn’t think of this as I’m meant to be the one studying OT) which did make a lot of a difference, halving the amount of time as now I could to 2 potatoes an hour instead of 1! In all honesty, though I was very slow managing to do 1 potato whilst mum did the rest. This is so good to know for the future though as I guess I just thought that eventually, I’d be able to do it, in actual fact this may not be the case and this is okay I just need to explore other alternatives such as buying potatoes that are already peeled.

However, mashing the potatoes was a whole different game and for the better indeed! I have an electric potato masher, and this is the best way forward for myself, it still requires good strength but the difference is stamina isn’t really involved as it only takes a minute.

Putting the beef in the oven was alright a struggle but it’s possible. This challenge really frustrates me because I know how to cook, and I enjoy it, but, because of the physical demands I just avoid it. Of which I know doing this will only make thing worse as the more I do it the better I’ll get! Getting things out of the oven was harder than putting them in as oven gloves don’t really work for myself because of the lack of grip, so again this means I need to explore different avenues.

I’m so glad I did this challenge as it enables me to then understand my weaknesses and strengths within cooking, of which I now can pull apart my weakness to eventually get better at the activity. My plan is to cook on a regular basis and to try and work on my cooking skills by exploring different meals as therefore I will know where my strengths and weakness lie.

I have really enjoyed completing these challenges, as some of these challenges are more than challenges they’re life skills, and this month has made me realised that I will struggle to complete these life skills all the way throughout my lifetime. I mentioned in a previous blog post that with these challenges I just thought that eventually with age I’d be able to complete them when realistically this may not be the case! Yes, this is frustrating as I am very determined, but it’s not worth the worry, there’s always an alternative. A few weeks ago, I did a blog post about unexpected battles and these challenges were definitely unexpected battles to young Georgia, but as I’ve got older, I’ve got used to the idea that not everything is going to be as easy as it seems and this has become the norm.

Thank for reading all the challenges I have loved all you’re support it has been incredible! Happy Cerebral Palsy Awareness Month 2019!!

Georgia
@georgiavine4213
@GeorgiaVineOT