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 Pexels.com

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,

Georgia
@georgiavine4213
@GeorgiaVineOT

World Cerebral Palsy Day 2019- Catching the Bus

HELLO AND HAPPY WORLD CP DAY 2019!!! As some of you may know World Cerebral Palsy day is my favourite day of the year, and I am so excited to finally share with you what I’ve been up to for World CP Day 2019! I cannot express how overwhelmed I have been by the response from my friends and family on previous World CP day’s, my social media has just been filled with the most amazing messages and if it wasn’t for these messages I wouldn’t have got such amazing memories to look back on. However, this only makes it harder, to be creative and try to top previous years. I highly doubt that my challenge this year will go the same way as my piano video did last year (as that was one crazy weekend) but a challenged is what you lovely people asked for so a challenge is what you got!

So if you haven’t gathered from my title this year I was challenged to catch the bus in my wheelchair- which if you’ve read my previous blog on restricted independence you will know that this is rather daunting for me, and gives me great anxiety.

Not only was I anxious the occupational therapist in me was overthinking everything- which in this case didn’t help! As part of my first year, we had to give a presentation of all the skills used in a particular activity and the activity I did was getting on the bus- if I’d have known that I was going to do this challenge I probably would have picked a different activity! But despite my brain going into overdrive my Auntie had set me this challenge and I was not going to let her down!

With my nerves in mind, we had a plan! My friend and I would go out on the bus to a local retail park, on the way there my friend helped me but, on the way back, I had to catch the bus independently without a word from my friend! Don’t get me wrong this challenge would have been a lot better if I could say to you that I did it entirely on my own but I didn’t. One of the reasons I didn’t despite my anxiety is that my friend said ”If I wouldn’t have been here what would be different?”… After thinking about this question, I answered ”Well, nothing.” She had made me realised that if I’d have wanted to I could have done it and I did do it on the way back as whilst getting on the bus my friend didn’t say a word to the bus driver I did it all alone in which she said ”Challenge complete.” and the challenge was complete and once I was on that bus I felt absolutely fine!

From this challenge, I certainly feel a whole lot better about getting on the bus, because it isn’t as scary as I think. Will I be using the bus a lot more? Probably not. If the bus was my only option, would I feel a lot better getting on it? Certainly! This is all that matters!

I love World CP Day so much because to me it means a great deal, Cerebral Palsy is such a board term and it’s hard to know how CP affects an individual unless you are close to that individual, therefore, World CP Day allows me to spread awareness and educate individuals on what this disability entails. Each year I want to do something different whether this is a challenge, piano video or just a blog talking about something I don’t normally talk about because I want to continue to raise awareness so people can understand that my disability, just like all disabilities, is so much more than what people see!

Happy World CP Day 2019!

Georgia
@georgiavine4213
@GeorgiaVineOT

Down’s Syndrome Awareness Month 2019!

October is Down’s Syndrome awareness month which gives me a reason to do another post on how adorable Tommy is. A few months ago I did a post about Tommy and my feelings towards no longer being the only disabled member of the family. However, that post was 4 months ago now and Tommy is now 7 months old so since then he has taught me an awful lot about what being a cousin means. I am very close to my family and we are always in regular contact- to be fair I would say that me and my cousins are a lot closer than most. I am very fortunate to be so close to my cousins and am thankful for their help as just like I’ve said about my sister sometimes even with my younger cousins I still feel like I am the one being looked after. I’m the one who has to grab on to their arm and I’m the one who asks them to carry my drink. As I’ve said time and time before this is fine I’m used, to it I’m not going to have a break down about it anytime soon; when a younger cousin asks you to help them and you have to redirect them to their other cousin, that’s also younger than you it can be a bit disheartening even if it’s something small like carrying their drink.

But with Tommy it’s completely different… Yes, I’ll never be the go-to cousin for practical elements and I can’t pick him up and bounce him; I can offer Tommy something that no other cousins can because I have a sense of understanding and that will always make our relationship special (even if he wriggles too much to sit on my knee). Even though Cerebral Palsy and Down’s Syndrome are completely different conditions Tommy and I have similarities and can understand each other in a way that no other family member can. Just like my parents have a new connection with Tommy’s parents because they understand what it’s like to have a child with needs. Since Tommy has been in our lives he has taught us so much and has enabled us to be closer as a family especially Amanda and me. This is because we now have something in common that we never thought we’d have in common and I must admit sharing experiences of disabled activism with a close family member is a very good feeling. I feel like I have taken on two roles one of them being the best big cousin to Tommy and the other one being the best little cousin to Amanda!

Amanda always keeps me updated on Tommy’s latest appointments- I love hearing about how he is getting on as I said sometime’s I can’t give advice but sometimes I can and even though my experiences aren’t the same as Tommy’s at times they are similar. An example being that me and Tommy both do physio and even though Tommy’s physio is different to mine me and Amanda still send ‘physio selfies’ and can still talk about it, mine and Tommy’s physio needs are different but we both have physio needs and that forms part of our special bond. I also relate to Tommy from an occupational therapist perspective- I have always said that I could see myself working in paediatrics’ so being able to listen to Tommy’s experiences just inspires me to become a paediatric occupational therapist even more because I want to help Tommy and understand his needs in the best way possible. I do feel like I have a better understanding of Tommy’s needs and the reasons for his therapy interventions such as ‘tummy time’ even though I’m only a year into my degree.

But, despite having this bond with Tommy- I love him for being Tommy and yes we would have had a different bond if I wasn’t disabled but I still would have loved him the same. Just because I understand his situations a bit better than other family members doesn’t mean I’m an expert on Down’s Syndrome either because I still have a lot of learning to do. Does it help me that I’ve had a seminar on it? Of course, but my own learning on Down’s Syndrome has just started, and this is what Down’s Syndrome awareness month means to me. Down’s Syndrome awareness month is an opportunity for me to learn more Down’s Syndrome and to learn more about Tommy. Yet, this blog is a start because when I’m writing about Tommy I learn so much about our relationship and the steps I need to take to keep building our relationship in which I and Tommy can always look back on to remember how significant our bond was even just 7 months in to his life.

Thank you for reading. Please share and spread awareness about Down’s Syndrome!

Georgia
@georgiavine4213
@GeorgiaVineOT