Life//Adventures

You may or may not know that I have been working with a charity called Fixers to create a advert to raise awareness of the signs of stroke - particularly in young people. Ive been doing it since around November time and I’m so pleased it is finally coming together! Last Thursday my project was picked up as a broadcast piece for ITV Meridian which you can view here. 

http://www.fixers.org.uk/news/6615-11208/strokes-striking-young-on-itv.php

I am very pleased with it and hope that I did it justice for other young survivors :) Since this went out I have had  endless media requests from radio stations, news agencies and freelance journalists. Its fun but difficult to decide who the right person is to tell my story too. I was featured in the Argus, Brightons local newspaper without even really knowing about it. Luckily the article was very nicely written by a lovely lady called Siobhan. 

I also spoke to the BBC Sussex Breakfast show about my experience which you can listen to here, Just skip to 1hr22

http://www.bbc.co.uk/programmes/p0184c71

I love doing things like this because if just ONE person can learn the symptoms of a stroke each time I tell my story then they could potentially save somebodies life. 

Act FAST. 

Lots of things to report so I will try to do some posts over the weekend. 

Firstly, I have received funding from the local PCT for Functional Electronic Stimulation for my leg and arm so I had an assessment with a guy from PhysioFunction called Jon. after assessing me, he suggested that I might still need a little extra support onto of the FES but that my current NHS splint was not the right thing as its too rigid. 

For some reason that day he had decided to bring his carbon fibre splints with him and suggested I  tried one with the FES, It worked perfectly, holding my foot just in place but allowing the FES to still work enough for it to improve my walking even with the splint on. I loved it. Then my physio suggested I tried it without the FES to see if it would be worth me using before I get the FES equipment, I LOVED IT. I didn’t want to take it off and when he told me id be able to wear normal shoes I was ecstatic! I ordered one instantly and went shoe shopping whilst I waited for it to arrive.

 I now have the splint and some lovely new nikes to go with it, its not as supportive as my old splint so I can’t walk as far yet and i’m much slower but I know i’ll get there and it will benefit me in the long run. Plus its totally worth being a bit slower to wear real shoes not those horrible velcros!! 

Reconstructing my stroke. Too realistic #itvfixers #stroke

OK I definitely didn’t but I couldn’t resist a little Busted reference and I did go on a tour around Terminal 2A which is currently being constructed… so that’s basically the same right? 

Just before Christmas my incredible friend and designer of the ‘Superstar’ jewellery range Jordanne Cliffe told me that her Dad had put Different Strokes forward to be one of the charities at Hetco, the company he works for’s Christmas Raffle. DS were accepted along with a local charity for disabled children. Then, In January, Jordanne sent me a message to say that the company had raised around £2000 for the charity and that they wanted me and Jordanne to collect the cheque to give to Different Strokes. On Feb 25th we were presented with the cheque, had a tour around the construction site and watched a few planes taking off. All in all it was an interesting way to spend a monday morning and I was very greatful on behalf of DS for the money they had raised and I know that the money will mean so much to everyone involved with the charity. 

The best (or worst ;) ) thing about the day was that when we were taking our safety gear off we went into a room where a boy, Simon, was sat working. When Jordannes dad came in Simon asked what was going on and he explained that we were there for the charity and that I’d had a stroke when I was 21. Simon’s reply was ‘I had a stroke when I was 17’ I was genuinely shocked, although I know a few people, I’ve never coincidently met someone my age(ish) who it had happened too. We chatted for a bit and he mentioned that he had met Sarah, ‘the girl from the undateables’ at a Connect meeting the week before which just seemed ridiculous, maybe I do know everyone who has had a stroke after all? Paha…

Anyway we swapped numbers and as it was my two year ‘celebration’ coming up Simon suggested the we got together with Sarah and Jordanne in London at the weekend, we went for dinner and drinks at Tottenham Court Rd and then to Covent Garden for a comedy show which was strange but fun, It was a very lovely way to look at the positives of what I’ve been through and think about all the great things that have come from it, especially all the new people I have met and continue to meet. 

“NEW FRIENDS!”

I can’t believe how fast 2013 is going, It’s february 26th already and tomorrow it will be two years since my stroke. At times it feels like it has flown by and at others it feels like it was forever ago. So much has happened between then and now. I’ve gone from not being able to sit up or smile, to going to the gym 3 times a week and having my smile back, Not that I didnt have plenty to smile about when it happened, strangely I did. I just physically couldn’t. 

I went from not knowing if or when I would be able to travel or finish uni to less than two years later - graduating with a first and ‘backpacking’ (dragging a suitcase) around Thailand and FINALLY I will be starting a new job as a marketing assistant on March 4th. With a training evening tomorrow, what better way to look to the future instead of the past on my stroke anniversary? 

There was a time last year that I worried if staying in Brighton was the right choice for me, I hardly knew anyone and was starting to feel lonely, re-finding my confidence has meant that over the last 6 months I have started to meet lots of new people, am constantly busy and can’t imagine leaving this city for quite some time.

Having a stroke is life changing and in many ways devastating  but that isn’t to say that there isn’t a life after stroke, you might have to do things a little differently and your journey might take a different route than you had expected but you can and will get there. It’s hard work, it’s tiring and it will have its massive highs and huge lows… Just take each day at a time, embrace any new doors it may open and don’t listen to any negativity. Had I listened to my negative drs/physios/occupational therapists then I would have never walked again, been how I was at 3 months for the rest of my life, slept through the whole of glastonbury festival and never have graduated without getting an electric wheelchair. I dread to think what they would have said about my trip to Thailand! Keep on keeping on and find a team of proffessionals who will push you not hold you back…

Never take anything for granted…

Disclaimer: Dearest family who may not want to know about my love life, please don’t read this blog (Granddad that means you!) I wanted to write this as I have been approached about a documentary about disability and sex and mixed with the recent series of The Undateables I wanted to post about how having a stroke has affected my dating/sex life as a 23 year old girl.

I may or may not have mentioned that I am single. Me and my friends are so single in fact that we joke about being forever alone, although i’m sure that not one of us will be (yes Rosie and Nicola, even you).

Before my stroke I had been in two ‘serious’ relationships, one from the age of 16-18 and another in my first year at university. Outside of this I never had any issues meeting boys, I was confident and constantly meeting new people, such is the life of a student. I had however been seeing my ‘first love’ on and off from when we broke up at 18 until mere weeks before I had my stroke at the age of 21. It was complicated but he was a huge part of my life. He was the last person I had slept with about 4 months before my stroke and it seems incredibly weird for me that we no longer speak, although i’m sure its for the best.

Following my stroke, whilst I felt like the same person, It was obvious to me and I’m sure to everyone around me that my confidence had been hugely knocked. I was horrendously self concious about the droop in my face with every smile being over dramatised in an attempt to force the left side of my face to mirror the right, on top of that I was trying to get used to being in a wheelchair with eyes glancing at me then looking away awkwardly or worse, I was using a walking frame, possibly the least sexy thing for a girl in her early 20s to experience. Friends and ex-flings started asking if I could have sex, something I was sure I could but had no real desire too, I didn’t feel sexy in my new body and I had my recovery to concentrate on but after a long 22 months of not experiencing it, I began feeling comfortable in my self again. 

I’m sure my three weeks in Thailand are what triggered the return of my confidence, I guess it came kind of hand in hand with feeling relaxed, distancing myself from many stroke related things in my life and feeling comfortable drinking again…sad that alcohol was what helped me feel comfortable in myself but it gave me such an invincible feeling that on one of our first nights in Bangkok whilst Sarah was chatting up a boy, I approached a group of german boys in a bar, asked if they spoke English and if they would mind if I sat with them and that was it I made some new friends for the evening. This mind-set stuck with me for the rest of the holiday, happily chatting to boys, getting a few snogs and exchanging phone numbers. The stroke was no longer at the forefront of my mind and my ‘disabilities’ didn’t seem to bother anyone- if they even noticed them at all. 

When I came back from Thailand I realised it was harder to meet people here than there and I made the decision to try online dating, I wrote about what had happened to me on my profile but I still got plenty of attention, it was weird and I wasn’t sure if it was how I wanted to meet someone but I liked the ego boost and after a few weeks I went on my first date. I was so nervous, an emotion that kicks my muscle spasticity into overdrive, making my arm and leg tense meaning its much harder to walk. The date was awkward but fun - just as I’d expected but a couple of hours into it I got a really bad headache which i’m still not sure if the guy really believed, we kept seeing each other and things moved quite quickly - at least until he told me he didnt want a relationship, that he couldn’t see us together and that he thought we would irritate each other. Although we stay in touch now I cut him out completely for a while, He was the first person I’d had a kind of relationship with since my stroke and if i’m honest I felt betrayed for putting my trust in him and was upset for a few days. 

I soon snapped out of feeling sad and I went on a night out with some friends and met a friend of friends who I instantly clicked with and had a really fun night with. Although he knew i’d had a stroke it wasn’t until the next morning that he realised I was wearing a splint when I walked which I honestly thought was great as I genuinely thought it stuck out like a sore thumb. It was nice to know that it wasn’t on his radar. We have been meeting up since and I think have formed a good friendship but he’s another one who doesn’t want a relationship, although he said he liked me and I like him its bad timing I guess as we’re both at complicated stages of our lifes. I started to think that this lack of commitment was saying something about me but I now think i’m just at a strange age where people don’t necessarily want commitment and I’ve even started to realise it’s probably not the right thing for me at the moment either. My physio keeps telling me to have fun in my early twenties before I settle down as once I’ve met someone I won’t have the chance to do it again and I think she’s right. 

There have been a couple of others I have met on nights out or online and every boy I have met since my stroke has helped me figure myself out again in one way or another, deciding what I do or don’t want and how I want to feel when in a relationship. For example I realised that online dating, whilst right for some people, wasn’t right for me and deleted my account after a couple of months and decided to do things I love and concentrate on making myself happy, not being made happy by somebody else. As Jessie J tweeted ”I know I can’t win. And I can’t make everyone happy but I will always be honest even if some don’t agree. Live your life in real life. Not online. Its not a fact its just my opinion. That’s all x.”

I was told my relationshipssex life would change after my stroke, I’m not sure thats the truth. Whilst of course there are physical limits, they are just as complicated and emotional as ever before. I think maybe its changed more with my age than to do with anything else. In regards to if I can have sex, if anything its pretty much the same - if not better! (sorry pre-stroke boys!)  I’m not sure if that’s to do with the boys I’ve met or my new relationship with my body but either way I’m starting to feel more comfortable with myself than I ever had.

I think disability and sex/dating should be a much more open subject so please feel free to ask me anything…no filth please.

When I was in hospital my brothers hamsters had babies - lots of them. Probably like most girls I am a sucker for something cute and flufy and I desperately wanted one for when I moved back into my house. My brother gave me this little fella who I quickly named Porkchop and began to love with all my heart.

He basically became by stroke buddy and flat mate, I’d play with him most nights and he became a very friendly little man :) I joked with my brother that he had given me a dud hamster as it seemed every month or so he had to go to the vet. The first time he had a hugeee growth coming out of his mouth which made me cry my eyes out, he had a little operation and the vet said to keep an eye incase it came back, It never did but he had plenty of other things up his sleeve to scare me with, scabs on his tummy, and most recently, conjunctivitis. Unfortunately Porkchop’s treatment for conjunctivitis would be his last trip to the vets. 

On Friday night I came home from my friends house and got him out to play but he wasn’t his usual chirpy self. In fact, he was hardly moving. He couldn’t walk and kept rolling onto his right side whenever her tried. I started crying. Alot. I rang my friend Emily who told me to ring the emergency vet. When I did what the vet told me didn’t really suprise me. I’d noticed that he could use one side of his body and not the other, when I described his state to the vet he said ‘it sounds like he might have had a stroke  you can bring him in if you like, its £100 for a consultation plus any treatment he might need’ I asked what they could do for him if it was a stroke and they said because of his age they would probably put him down so if he didnt seem to be in any pain the best thing to do would be keep him warm and check on him in the morning - he would either survive or he wouldn’t. I managed to fall asleep and hoped that in the morning he’d be running on his wheel but when I checked on him it was clear that he had passed.

I’m really sad that he is no longer here and have buried him in a plant pot in my garden. I guess I can take comfort in knowing that when I had my stroke I didn’t know what was happening and didn’t feel any pain so hopefully it was the same for him… Rest In Piece Porkchop.

Since my stroke I have been lucky enough to meet some truly incredible people who have not only become friends but who have helped me through my recovery. Ive wrote about the Scott family before, I began talking to Joanie Scott on facebook through a charity called Different Strokes, I soon also began talking to her daughter Sarah. Both have had strokes caused by a PFO like mine. The Stroke Association then gave us all tickets to the Queens Diamond Jubilee concert where we got to meet for the first time and we’ve been in touch ever since. Sarah, for those who don’t already know, had her stroke when she was 18 and now has aphasia which means she has difficulty communicating. You can find out more about aphasia here 

Sarah was one of the 3 people on the first episode of Channel 4’s series 2 of The Undateables. She was fantastic and you can watch it online by following this link 

Lots of people have asked me what I think of the programme title, as some of you will probably have seen on my facebook it is something I could talk about forever and i’m VERY opinionated about. So here goes…

The title ‘The Undateables’ is of course, controversial. It is sensationalised to raise eyebrows, to shock and to get people talking about it. I do not doubt that Betty TV had a full understanding of the heads they would turn and the criticism it would receive for seemingly calling disabled people ‘undateable’. They perhaps also, unlike many people who take to twitter and facebook to call Channel 4 a ‘disgrace’, are probably very educated in the fact that our soceity does view people with disabilities as ‘undateable’ wether we like it or not. In 2008 an Observer poll found that 70% of people would not consider having sex with a ‘physically disabled person’ If that doesnt already scream ‘undateable’ at you then consider this next fact: a mere 4% of people said that they had previously slept with someone with a disability.

Knowing these facts alone makes me believe there is a need for a programme like the undateables and if people could look past the name they would see a programme that is caring, considerate and confidence boosting to those who take part. If viewers watch with a narrow mind of course the purpose of the programme seems to change, people make jokes and tweet comments like ‘i still would’ but with an open mind it shows that dating with a disability is just as sweet, exciting, awkward, heart-warming or heart-breaking as dating without one. Like with any dates there are awkward silences to fill, the possibility of being stood up and the thrill of getting carried away with infatuation, wether the participants find love or not I can see from following on Twitter (@SarahBScotty @Hadyn_Clark @ChasingShadowsUK & @Sam_Culpeck that their lives have changed for the better since the show, more confident, happy and with Sarah it has even helped with her recovery. 

I really commend Betty TV and Channel 4 for being brave enough to produce a programme on a seemingly taboo subject and for doing it with such a sensitivity that the ‘undateables’ do not feel like the pitiable victims of sensationalised media that many people who have never seen the show assume that they are. There is no perfect way to represent disabilities on television (I spent my final academic year trying to figure that out for my dissertation) but I for one, don’t think The Undateables is a bad way to go…

Just over a year ago I spoke at The Stroke Associations event ‘A Night with Nick’ it was a very overwhelming night for me and I was lucky enough to have some great support from some of the celebrities there, particularly Jay Camilleri, Gemma and Arg from TOWIE and Cheska from Made in Chelsea. Last night I attended the made in Chelsea wrap party and when I bumped into cheska in the toilet I said hello and said where I had met her, ‘you’re the girl that spoke, you were amazing’ and I said thankyou for making the night a bit easier for me. After I said bye I realised that as she remembered me I must have made an impact on her and hopefully the rest of the room. It’s great to know every little bit thats done helps to raise awareness for all young stroke survivors!