Abbie's Entry

February 07, 2020

Firstly a Happy New Year to all readers. Into the 20's and a Paralympic year!

 

I had a really busy final quarter to round off the year. I had decided that I wanted to create a range of crafted gift items to be sold at Christmas Craft Fayres in aid of the Dame Vera Lynn Children’s Charity for whom I am an Ambassador.

 

Imagine Father Christmas’s Workshop and you will have a pretty good idea of what we looked like as my PA's and even my Grandparents all got involved in making and wrapping.

 

My Dad supported me in the second Fayre and had some really great ideas about visual merchandising which has inspired me to look at doing some more Fayres in the Spring and Summer.  He also suggested that the school children and their parents would be inspired to buy from a Paralympian so I wore a bit of kit!

  

 

I juggled the Fayres with my usual training commitments and traditional run up to Christmas with chutney making.

 

With my bedroom mural completed by local artist Dean Rush I have started to add my own embellishment giving it my own stamp by putting on some more Disney and Harry Potter characters.  It has been such a great project to be involved with.  I have really enjoyed sourcing bedding, lights and soft furnishings and have definitely got the bug with my guest and PA room in my sights for decorating projects this year.

 

'Work hard, play hard' is definitely my motto so I have been thrilled to have had the opportunity to be involved with the design and install of a new chill out sensory space at home. I worked with Chloe at Sensory Guru who has delivered on taking the same equipment that you would find at Dame Vera Lynn’s Children’s Charity and putting an adult spin on it to create a gorgeous sanctuary.  It’s my safe space to be alone and chill with lights, bubble tubes, mood lighting, gentle music and visuals but it is also a place to invite my mates, play Wii or snuggle for a film.

 

I am so grateful that everyone bought into the concept.  Private space has been a virtual impossibility for me up to this point.  PA's are always around me – eating, drinking, personal care – even a bath I am always monitored – even asleep there is a monitor.  So, this private space that I can access alone, that I can shut the door on the world means everything to me.

 

With Fayres done, the mural in my bedroom complete and the Sensory Room down to snagging I was more than ready to let my hair down and party.  I did just that at the Mamma Mia Party which was the best Birthday present from my Grandparents and Uncles and Auntie.  It may have been a chilly December night at the O2 but inside were at a Greek taverna boogying as Dancing Queens. It was absolutely brilliant and if you get the chance to go, you must.

 

 

From Mamma Mia to Oh Mumma with a night out to see Magic Mike at the Hippodrome.  The Show was fantastic but access was a nightmare with broken lifts and no ramps.

 

Christmas was really special this year with my paternal family coming to have a pre Christmas meal as close to the day as possible on the 23rd December.  I was really pleased with a couple of new recipes an Aubergine Nut Roast and a Sprout Gratin.  I followed this with a showstopper trifle and chocolate roulade.   By early afternoon on Christmas Eve I finally shut the doors to the outside world and my parents and I enjoyed a couple of days with the finest steaks, seafood and cheeses – all my favourite things.

 

We celebrated New Year with friends and this was closely followed by my first photography exhibition which was held at a local microbrewery.

  

 I am straight back into training but my work as an Ambassador continues.  I was deeply honoured that my Parents and I were invited to the Royal Albert Hall to see a new portrait of Dame Vera Lynn unveiled in collaboration with the Royal Mint.  A wonderful afternoon which was concluded in such style with Britain’s Got Talent winner Colin Thackery.

 

I have already got my eye on a couple of dates for Friday fun down at the charity and I have just booked the first Summer Fayre.  Another of my favourite sayings is ‘Seize the Day’ or my version ‘You snooze you lose’  that early bird gets jobs done whether it is training, photography homework or booking your Summer Fayre to ensure you get the best pitch!

Georgia's Entry - 2019 Round Up

December 30, 2019

As I sit here writing this blog there is 4 days of 2019 left, and what a year 2019 has been. Where do I begin? This year I have achieved a lot in terms of blogging, and I have got many memories with CP Teens. 

First let’s talk about becoming an ambassador for CP Teens in June, this has got to be one of my best achievements this year I have been wanting to become an ambassador for CP Teens for a while and I did not think that I would become one in 2019. But here we are 6 months in, and I’m absolutely loving it! CP Teens has been a big part of my life this year and I honestly believe that they have helped me to become the person I am today who isn’t phased by her disability in the slightest. I’ve always been up for any challenge that comes alongside my disability and have never been negative about it, but this year has made me realise that my disability is the best part of me as without it I wouldn’t have had half as many amazing memories that I’ve had throughout 2019. This year I have been on many CP Teens events such as bowling, the sponsored wobble and let’s not forget the ball! From these events I have met new people and made new friends who I know will be friends for life! 

I have also had a crazy year with my own blog Not So Terrible Palsy that I started in January, a year on and I cannot believe the opportunities that it has already given me. I did not think a year later that people would still be reading my material I’m still taken back every time someone leaves a positive comment on my blog. I still have a long way to go with my blog, but I like where it’s heading! 2020 is going to be a big year for me and my blog as I have my first conference coming up in June- I’m feeling very nervous but I can’t wait for the year ahead I would have never have dreamed that I’d be in this position when I started my blog at the beginning of 2019. Just before Christmas I had a few meetings to discuss my plans for the conference and other projects that I’m working on (that will be released in February) and I’m just in ore that I’m in the position that I’m in. 

 

I also have events with CP Teens 2020 that I am looking forward to! In January 2020 I am co-hosting bowling with CP Teens which is mental just last January I went to the same event as a ‘CP Teen’ myself so to be co-hosting this event as an ambassador just a year on is beyond anything I would have thought. Thank you to Ellie and the rest of the crew at CP Teens for having me as part of the team I really am honoured! Not only do I love CP Teens so does my family at the sponsored wobble in May I brought quite a big crew and we all loved it so much it was one of the best days of the year, my family love this charity so much and will go to great lengths to help raise money for it as long as we can. 

 

Thank you for an amazing year CP Teens and thank you to all those that read and continue to read my blogs on both CP Teens and Not So Terrible Palsy.

 

I wish you all the best for 2020, 

Georgia
@GeorgiaVineOT (new Twitter handle-very official, lol)
@georgiavine4213

Maddy's Entry

December 09, 2019

Hi Everyone,

So on Thursday 24th October I graduated from University – I was so nervous! In July I had been asked to be the Student Speaker and I had said yes! Thursday came around quickly and I was feeling nervous and excited. The week before I had been practicing my speech on friends and neighbours and rehearsing it when I could. 

 

Thursday was an early start as we had to be in Plymouth by 9:30am, I arrived at the Guildhall and registered where I got the tickets for my parents and friends that we had invited to come. I then went to be fitted with my gown and I was able to have a quick look inside the hall so that I could see where I was sitting on the stage and test out the walk to the lectern and back – this was helpful as we found that the stage had a bump in the middle of it so I could practise avoiding it!

 

After that, we went to have photographs taken. By 10:15, I made my way over the road with my guests to the VIP Room to chat with the VC, lecturers and the Student Union President before we all went over to the Guildhall. At 10:50 my guests left to be seated in the Guildhall with all the other guests and students (my parents got front row seats!) and then it was the stage party’s turn at 11:00. We formed a line and were ready to go when a member of staff in marketing who was in charge of getting us all ready, received a message from a member staff in the Guildhall to say the fire alarm had gone off! So for the next 5 minutes we were hanging around waiting to see what was going to happen – thankfully false alarm but my nervousness was getting worse with the wait!

 

We received the all clear that everything was ok and we set off to the Guildhall. Walking into the hall was very nerve-racking with everyone looking at you, plus I hadn’t told any students that I was Student Speaker. We walked up on stage and took our seats. The VC opened the ceremony and the first half of students went up on stage to collect their awards, this included me. Next was a presentation of an Honorary Degree to Honorary Graduate Debra Searle. Debra is an Atlantic rower, television presenter and author – and she used to go to the school I went to! Her speech was amazing as she told her story of rowing the Atlantic alone. The second half of students went up on stage to collect their awards and then some lecturers were called up for receiving awards which included my tutor for getting his Doctorate. 

 

Then it was my turn to speak.

 

They announced me and I was so nervous – I got up and after nodding at the VC, I made my way to the lectern (avoiding the bump in the floor!) After being so nervous throughout the whole ceremony because I was the 2nd to last person to speak, I actually loved doing my speech! I’m not going to lie – I was shaking the whole way through and I was little nervous but I soon became confident and I enjoyed telling people about my 'journey'.

 

After my speech, it became a blur. I walked back across the stage to my seat and as I did, I saw the lecturers stand up! I then saw all the guests and students do the same - I was the first Student Speaker ever to receive a standing ovation! I felt like crying! I actually had to sit down because my legs were shaking so much!! Once the clapping and whistling had died down, the VC went to the lectern to close the ceremony.

 

After the ceremony I had students, parents and lecturers (some who I didn’t know) coming up to me to congratulate me on an amazing speech, saying that they cried and that I should be a motivational speaker (maybe I need to think about changing my career choice). I had professional photographs taken with the VC, my tutor and the Student Union President and then had lunch with the VIPs. 

 

In the evening we went out for dinner and the next day I had gone viral on Twitter, been approached by the BBC for an interview and been approached by a school to go in and speak next March – more exciting things to come hopefully!

 

I thank everyone at Marjon for giving me the confidence to be the Student Speaker. I hope you all enjoy the video - you might need tissues! https://www.facebook.com/MarjonUni/videos/1010353799309065/

 

Thank you,

 

Maddy x

Cat's Entry

November 29, 2019

Hi guys! 

 

This month has been an interesting one for me! The beginning of the month saw a return to the CP Teens Ball that I was so excited to attend with my mum and meet up with so many people I often only get to see once a year! It was a fantastic evening with lovely food and some great 90s throwbacks on the dance floor! I love attending this ball, and it’s something my mum and I look forward annually together! I’m always happy to see everyone so well and finally put faces to names I’ve spoken to on the internet over the years.

 

I’m not sure if any are aware, but I’ve worked retail for the past 6 years - week after week. I had unfortunately become so familiar with my role that I was becoming pretty bored with my role. Therefore, back in September I applied and interviewed to be the new supervisor at the weekend!  3 weeks ago I had gotten the news I’d been both apprehensive and crossing my fingers for - I had aced the interview and was indeed the new supervisor on a Saturday! I’m thrilled to have the chance to do something different and I’m pleased to say it’s been going so  well thus for! The funny thing about my new role is my name badge, officially it reads “Cat Supervisor" which makes it seem like I supervise actual cats. In the past I’ve struggled to find my place and I’ve felt “held back" by my employers specifically because they have not seen past my Cerebral Palsy or valued my abilities so I’m excited to prove them wrong and support my colleagues. After all I’m quite used to asking my colleagues for assistance with certain duties on the job, such as folding or repackaging items.

In other news my modelling career seems to be going quite well. I got to complete my ultimate dream of a photoshoot with OWLS. Their names were Thor, the Eagle Owl and Luna the Barn Owl. This shoot has such a significance to me. I never met my grandmother, but she collected owls unbeknownst to me. It was such a shock when my dad told me as both my cousin and I had a large owl collection too. I also got some amazing news about this shoot - the photographer is going to get the images published and I’m so so excited! These images give me so much confidence and I feel positive about myself when I see them being appreciated by other people! 

 

I'm also feeling better too, after restarting my anti depressants that also have muscle relaxants. I know medication is not the answer for everyone but I’ve found they have really helped me get back to my normal self.

December is very nearly upon us and I’ll be turning 23. I’m going to try my best to make this my best year yet! I think this is my last entry of the year so I wanted to wish everyone my best and hope they move into the new year in high spirits. Things are looking up!

 

Lots of love,

Cat =^-^=

Abbie's Entry

November 01, 2019

One of my PA's has been sharing a blog with me that she has recently started following. It is called Gin & Lemonade and is written by Lorna - a young Mum with CP.  Lorna writes about a whole host of topics but one that has struck a chord with me recently is access.  Lorna does not mind being in a wheelchair.  What she minds is how poor access is.  The story of the teacher carrying a student in his backpack for a field trip has gone viral.  Lorna feels that we seemed to have missed the point in praising the teacher when we should be finding and highlighting wheelchair accessible nature trails. The young person involved is fine about the story going viral but Lorna makes the more serious point that disabled people are more than props for someone’s good deeds. 

 

Like Lorna I have my wheels. My wheels are not the problem.  My CP is not the problem.  My issues are inaccessible buildings and people not tuning in to what accessible means.  I am disabled by my environment.

 

From Service Stations which I can’t get my wheels into could you not move stuff so I can get my wheels in?  Sometimes it really is that simple.

 

Or how about before you advertise your Farmhouse as fully accessible how about trying it out with lots of disabled people to ensure that it really meets our needs.  We had done our research on a property to try this year for our holiday but the layout was tricky at best and unsafe at worst with me needing to go out onto a hairpin bend on the road to access the garden and raised pool.  The floodlit photo on the website did not show the lip!

 

I should have realised that things were not going to be easy from the get go for this trip.  Mum could not find her Passport on the Saturday with us due to leave in the early hours of the morning on Monday.  By Sunday afternoon having turned the house upside down it was clear that this Passport was planning on staying hidden and it was going to be too difficult to postpone given the way that my PA's were all booked up to be flying in and out over the next 3 weeks.

 

So I waved Mum goodbye and set off with some crazy weather for company all the way down to my favourite hotel and my preferred room which had been remodeled since my last stay and yes, you guessed it it was no longer accessible.  Delicious food helped to make up for the disappointment.

 

We then moved over to the Farmhouse only to find that it was not going to be suitable so immediately started to try and find what else might be available.  All in all that first week was spent packing and repacking and a steady stream of conversations and negotiations in an attempt to salvage the trip.  

 

So a week after I got to Spain, Mum arrived and we were back at the hotel for a week. All in all that first week was not very restful so the holiday only really got started once Mum arrived.  At the end of that week we moved again to an apartment in the Square.  Best fit given the circumstances.

I got back at the end of September and have eased myself back into training from home having made the decision not to trek up to Lee Valley twice a week.  I have my new gym all set up at home and my PT is now coming across and with the days drawing in it feels like a good way to be heading into the Winter months.

 

In addition to the gym, great progress has been made on the murals in my bedroom.  It was hard work getting the brief together but I have got exactly what I wanted.  The only thing is having seen how great it looks has inspired me and I want more so that my whole bedroom is filled with Disney and Harry Potter characters.  I also have my Sensory Room to look forward to being installed at the end of November.  Feels like it has been a long time coming but I appreciate that it was important to get the plans right.  I know that it is going to provide me with the most important chill out space where I can have some privacy at last.

 

It was my Birthday this week and I started my celebrations with a surprise visit to Leonardslee Lakes and Gardens where one of my team has gone to become a Wine Ambassador.  I thoroughly enjoyed a Cheese and Wine pairing experience followed by a bottle of bubbles that Emma opened with a Sabre at the table!  This was followed by a visit to the Doll’s House Exhibition which was impressive.  I had taken my camera as I’m doing a Photography course at College but drizzly weather meant we spent only a little time in the garden.

 

On the Sunday I had a Surprise Party.  My PA's had worked to turn the outside area into a Big Top and we had a singalong to The Greatest Showman.  My afternoon began with a wonderful meal with my family but I made sure to save room for some Tapas during the film!

 

Monday was the actual day and I opened cards and presents first thing before heading up to London for a bit of retail therapy and a family meal.

Now having started this blog by saying how disappointing access often is I want to end it by telling you how pleasantly surprised I have been by the College experience.  I am delighted to report that the faculty have already worked with a quadriplegic student and currently have a student with access requirements.  As a result the Risk Assessments and Emergency Evacuation procedures are all in place and the College have even offered to train my PA's on the EvacuChair!  

 

In fact I have been so inspired that I went to an Open Day at the College to see what options might be available for Art.  Watch this space for what I find.

Gavin's Entry

October 17, 2019

Hi everyone,

I hope you are all well. Firstly I want to start off this blog by wishing those who are going to the CP Teens Ball in a few weeks time a wonderful night. I have no doubt you will all have an amazing time. Unfortunately I am unable to make it this year as I am preparing for the World Para Athletics Championships in Dubai later on in November. I am gutted to be missing the ball this year but sadly you can't be in two places at once. I wish that was possible though - that would be so cool!

 

Earlier this year, I promised that I would do a blog post about my recent trip to Romania with the boys' brigade when I returned. So for this blog, I thought I would share a few paragraphs I have written about the trip and the work we do in Romania:

 

Having visited previously in 2017, I was delighted to have the opportunity to make the trip to Romania and visit the Rhema Foundation for the 2nd time. I couldn't wait to return. One of the main reasons the boys' brigade continues to visit the foundation is to spend time with the residents. Over the years, a special bond has been created between the residents and the company, so much so we now consider each other to be like family. All the residents are dependent on the foundation to support them and unfortunately have very little or no contact with their family. Also, during our last trip, we learned that we are the only organisation to have visited multiple times. With this in mind, we try and spend as much time as possible with them during our trip. The disco and karaoke on the final night was a definite highlight.

 

As well as spending time with the residents, we worked with children from local communities and helped to run the foundation’s daycare sessions. Most of the children that attend the sessions come from gypsy backgrounds. These daycare sessions are vital as they not only provide a safe space to play and also they ensure the children receive an education they otherwise likely wouldn’t get due to the low status of gypsies in Romania. It was great to see the kids running around and having fun. They fully embraced themselves in the activities and challenges we provided, it didn’t matter whether it was making sculptures out of play dough or singing (and doing the actions) to “Baby Shark”. They even made sure they outdid us each time!

 

The first time I went to Romania, I really realised the importance of the work the Rhema Foundation does and going for a second time only reinforced this. Their work really is invaluable. The foundation has helped changed so many lives.

 

It was an incredible week. I am already looking forward to when I next visit, hopefully in 2021.

 

Gavin

Georgia's Entry

October 03, 2019

When I first started playing the piano 9 years ago, I did not think that an instrument could have such a significant impact on my life.

 

I was influenced to get into the piano by watching my sister play as she had started lessons 18 months earlier, but I never thought I’d be able to do it and I just ruled it because of my fine motor difficulty due to my Cerebral Palsy.  Then in 2009, my sister was involved in a piano concert of which her piano teacher kindly asked me to be involved, I was a bit anxious as all I’d ever played was ‘Twinkle Twinkle’, however her piano teacher suggested I followed the lights which seemed perfect!

 

After doing this amazing show, I decided that in the next show I wanted to play the piano for real and nothing or no one was going to stop me! I started off basic as it was very hard to play using both hands, I am right-handed and whenever I’m using my right hand my left hand tends to wander off. I had a lot of work coming my way, but I was up for the challenge.  Over time I have got better at the piano, and not only this but it has been a great source of occupational therapy for myself as since I started playing my fine motor skills have improved. It challenges parts of my brain that need to be challenged and pushed as by playing the piano I must work against my brain. I admit I’m not the best pianist in the world, but this doesn’t matter all the matters is that I enjoy it.

 

Playing the piano has given me many opportunities I uploaded a video of myself playing for World Cerebral Palsy Day, in October 2018, of which I was taken back by how many views I managed to get! So now I am using the piano in a positive way.  I never thought that when I started 9 years ago, that it would help me gain confidence in not just being a young-women but being a young-women with a disability. Due to my disability, I have a speech impairment and some people find it hard to understand what I am saying so playing the piano gives me the ability to present myself in a clear way without presenting barriers and to have this ability makes me so thankful to my amazing piano teacher!

 

You can achieve anything if you put your mind to it (sorry for the cliché) however this is what happened in my case!

 

Thank you for reading,

 

Georgia Vine

@georgiaannv 

@georgiavine4213

Josh's Entry

September 19, 2019

Hi everyone,

Hope you all had an amazing summer & enjoying being back at School, College or University. I thought I’d use this blog post to make an announcement, I have decided to step down as an Ambassador for CP Teens UK after 5 & half years. This wasn’t an easy decision for me as I am so grateful to be involved in such an amazing charity that does amazing things, however I feel it is the right time to take a step back as I feel I can’t give enough time with my work & I will be getting more involved in a couple of mental health charities. 

CP Teens has made me become more confident in myself and with my disability, without CP Teens I don’t think I would be where I’m at today in my personal life & my work life.

I would like to share my story of what CP Teens UK has done for me, As a child I was quite outgoing & never afraid to get involved in social activities, then when I went to High School I was constantly in & out of hospital through out my teenage years & I started getting social anxiety & going into a shell, I would never go out & just spent all my time on my own as I felt my Cerebral Palsy was a burden on everyone around me as I couldn’t get involved in much my friends were doing, It was like nobody could understand how I was feeling & I struggled so much with loneliness. I started getting involved in radio to try & help but there was still a lot of struggles I never knew what to do, then doing my own radio shows I got twitter to help with promotion of my shows, I started getting a following so decided to use the platform to talk about me & my Cerebral Palsy, this would turn out to be the best decision I would make.

Through talking about my Cerebral Palsy on Twitter I came across Ellie & she was telling me about CP Teens UK and her plans for it & invited me to become an Ambassador, which obviously I said I would love to be. CP Teens UK helped me so much, finding a group of people who could understand me & know how I’m feeling. Being involved in this charity has been great & I have met so many great people & hopefully helped loads of people too. 

Looking ahead to the future I am going to be getting more involved in a couple of mental health charities as I have struggled with mental health for a number of years & it has come to a stage in my life where I feel good about myself & enjoying life so thought I can help more young people who might be struggle & give them the support they need. 

I will continue to follow & support CP Teens UK, wherever I can & wish everybody involved in the charity the best of luck & if anybody needs someone to talk to about anything feel free to get in touch & I am always willing to talk with people.

Thank you to every single person who have helped me so much over the years I will always be forever grateful.

Josh

Georgia's Entry

August 22, 2019

Red Tape

 

There’s no handbook about what it is like to have Cerebral Palsy and this means that there’s no section about what the biggest hurdles are, but I can guarantee you that if there was a biggest hurdle it would be red tape. A lot of disability bloggers talk about the extra forms we have to fill out just to get to where we need to be so, I thought I’d tell you my thoughts on it. Filling out extra forms is just a part of my life and something that I am used to; at times the amount of hoops that I have to jump through is very frustrating. The older I get the more determined I am to succeed so as soon as I see the red tape I fell very deflated because it’s almost as if I was going at 60mph and to get knocked down to 20mph- which, isn’t the pace I want to be working at! 

The most frustrating part is that sometimes the exact same hurdles pop up, or even worse get bigger. I have just recently had an issue with renewing my blue badge in which this has taken 2 months to get sorted as my medical evidence wasn’t acceptable. I get it - the medical evidence has to be up to date! But my Cerebral Palsy is never going to go away or change for that matter! I also still get issues around my epilepsy - I’m seizure-free and have been for 15 years and have been off medication for 3 years. Why is this still a big issue? I understand my needs could change and you never know what’s around the corner; I don’t think everyone would have invested 3 years into getting me driving if they thought that I was going to have a seizure anytime soon. The most confusing aspect of the red tape is that sometimes the reasoning behind the red tape can be completely different. For example, going back to the issue of my epilepsy, this particular process I’ve done before and the last time I did it, no questions regarding my epilepsy came up. 

A big part of dealing with this red tape is telephone conversations, and due to my speech impairment telephone conversations are not my best friend and on numerous occasions, I’ve had to end the phone call and wait until my parents are around because the person at the other end of the phone can’t understand me. I’m a lot better at dealing with these telephone conversations then I used to be and have gained confidence, but when I have to pass the phone onto my parents I do feel like a little bit of independence has been taken away meaning that this process becomes more annoying. I would be wrong to say it gets me down because it doesn’t; as a 19-year-old I’d like to think that I can deal with these situations a lot more independently. But even if I can deal with the phone calls, when the form that I have to fill outcomes through the post and is not electronic, this automatically means that I need help as I struggle to handwrite so yet again it gets passed on to my parents, which again leaves me displeased. 

Frustrating or not the red tape just comes hand in hand with any disability and not just CP.  Do I wish this red tape wasn’t as hard to cut? 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 this blog today because of my CP. So even though this red tape annoys me when I look at the bigger picture I realised that there’s worst things to stress over!

 

Thank you for reading,

Georgia
@georgiaanv 

Abbie's Entry

August 15, 2019

Considering I am quadriplegic I feel like a bit of a Juggler at the moment as I have got several  plates spinning, or is it lots of balls up in the air!?!  Feels like both!

 

I have had a big recruitment drive going on which I have been heavily involved with - interviews, shadow shifts, taster shifts. I have to be honest, it is exhausting. Putting yourself out there, inviting strangers into your home, being extra sociable to get to know new people with no guarantee that at the end of it all any of it will work out. I have fingers crossed that it will and I am doing everything in my power from my side to get things to work.  From my Team Leader down we have had quite a move about with virtually a whole new team which means lots of additional training and Staff Meetings.  How long is reasonable to expect a newbie to get the hang of the system and my routine?  It’s a question I am asking myself on a daily basis right now I can tell you.

  

A ray of sunshine - although it feels like a lifetime ago, given I am currently sitting here in what feels like a Monsoon, was my trip to Center Parcs with my two longest standing PAs.  It was the first time at Center Parcs for all of us and I have to tell you it was one of the best breaks I have ever had.  Can you imagine being disabled and being told that you can do every activity that you want to?  No? Nor could I.   The power of yes is infectious.  I zip wired, I went on the white water rapids, I did Field Archery and the Tree Tops Adventure and the staff were superb.  Nothing was too much trouble and wherever an adjustment could be made to help me access the fun it was done.  I will definitely be going back.

 

My new comfortable chair has arrived and I am loving it.  I have dates to start my bedroom mural to start within the next fortnight, my Sensory Room is well on the way thanks to fabulous Chloe at Sensory Guru - who are a forward thinking technical genius set-up who have recognised the gap in the market for us 20 somethings who would like a chill out zone at home where we are safe and can actually shut the door on sharing all of our home with PAs.

 

I wanted to touch on the difficulty of getting out and about for friends - relationships. I know that my situation with around the clock support is different from the majority of my mates who often rely on parents and siblings for help.  For the past two years I have tried to arrange a Summer gathering and neither year has it come to much and I know the major stumbling block is that my friends find it so difficult to travel any kind of distance.  Leading on from this point it poses the bigger question.  If friends find it hard to get support to do social things if they are relying on help from friends and family how are we supposed to establish relationships and date?  Life is hard enough but there are just so many obstacles put in our way to have any kind of meaningful relationships when you have PAs or parents helping you to FaceTime, feeding you if you are able to get out for a meal, generally ear wigging, lack of privacy. 

 

I have had a few competitions since I last wrote and the weather has been wild - from rain to winds at all of them.  Manchester was really tough.  We had a journey of over 9 hours on the Friday to arrive at a hotel with a kitchen closing.  Saturday we woke to torrential downpours.  Arrived at the venue and my chair gave up.  Throwing conditions were so wild Steve Millar MBE described throwing the club as trying to throw a slippery bar of soap.  Huge thanks to my tribe -  Nessa for her support - particularly in the loan of her chair, Taz you were an awesome support to me in the stands and to Ali who makes light of whatever chaos is thrown at us.  Ali you are a Warrior! 

 

I love a show and the Tina Turner story was sensational. I went with my Mum and Dad as a birthday treat for them and we treated ourselves to just being a family with no PAs and a special supper at the Savoy!

 

Summer Exhibition at the RA was a mixed bag this year but I enjoyed spending the time with my arty inspirational Grandma and we finally got a date  to visit the Doll’s House Shop at Steyning.

 

Regrettably I did not enjoy Thriller as much.  Felt a bit like Karaoke for me.  Shame.

 

So I have just cancelled an outdoor do for my PAs to get to know each other this weekend as the weather does not look as if it plans on improving.  I’m hoping we can move it indoors for a Painting Party for my sensory space.  There will be cake! 

 

I am really in need of some sun and am really forward to catching some sun in Spain in September. The sun definitely eases my spasms and I sleep so much better. All PAs have been tasked with bringing ideas for games and activities so I am excited to extend our repetoire beyond Uno!

 

Beyond this it will be Birthday celebrations, Little Mix and thinking about Christmas. I have decided to do some Craft Fayres making bits to sell on behalf of The Dame Vera Lynn Children’s Charity for whom I am a patron.  Always busy and always working at living my best life.  

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