Life//Adventures

If I dare say so myself, I reckon I’d make quite a cute alien #mri #brain #stroke

Old people on buses. I’m going to have a little bit of a rant because to be quite honest I am about fed up of old people treating me like I’m some kind of inconsiderate scum bag on the bus. Earlier today I caught the bus to hospital so I could collect a copy of my MRI scan, on the way back I got on a bus using my disabled bus pass and the driver pulled off before I had sat down, usually I wouldn’t sit on the priority seats but when the drivers pull off its not safe for me to walk down the bus so I sit wherever I’m closest too. I often get looks but will ALWAYS offer my seat to anyone who needs it more than I do. On this occasion an old man sat next to me, after about 5 minutes of him looking me up and down I looked back at him. “Are you disabled?” He said ‘Yes’ I replied although I have to admit I don’t really see myself as disabled, legally, I am classed as disabled. “Why” I asked him and he just pointed at the sign. “I’m recovering from a stroke so I am entitled to sit her thank you very much’ I could see the questioning look on his face and felt like screaming “yes I’m young, no strokes don’t only happen to old people” but I shouldn’t have to explain myself. I wanted to talk about this because its not the first time it’s happened from an old person and I don’t understand why they have to poke their nose in, fair enough if there was somebody else who evidently needed the seat but there wasn’t so what difference did it make to him? He was sat down. If anyone worse than me needed the seat they would have asked or I would have offered. I hate having to explain myself because my disability isn’t obvious and the annoying thing is if I was to be ignorant, he didn’t look disabled either he just looked old so I wonder what would have happened if I’d asked him the same thing…

So this is my very belated post about Thailand. I’ve been so manic I genuinely haven’t had time to write it up and now I don’t know where to start. This is probably going to be  pretty long…

Getting there…

We flew with Jet airways an Indian airline from Heathrow. We had booked special assistance as I still struggle with distances. At heathrow it was fine, we got a wheelchair went through security and then Sarah took over with the pushing so we could get breakfast and look around the shops! How weird would it have been with a special assistance guy waiting for us to eat? The flight itself was absolutely fine, I took half an aspirin before we boarded and wore flight socks, even though my dr said an aspirin wouldn’t change anything it was something that made me feel safer. We stopped off in Bombay on the way there and not only was it the most unorganised, worst smelling, manic airport the special assistance was also awful but I’ll go into more detail at the end of this post about the way back where airport staff made me cry. When we finally got to Bangkok again the assistance was like England and we had a cute little thaiman that me and Sarah instantly fell in love with.

Heat exhaustion?

We got a taxi to our hotel which was the perfect location - just off khoa San road. We had a great time in Bangkok, shopping, eating, sightseeing and drinking. We got tuk tuks around the city to see all the sights and on Khoa San road we had our first bucket which turned into a very messy night and a very bad hangover - the drunkest I had been since being ill. We then left on a night bus to ko Samui to meet Lis and Megan. The bus was a nightmare , I only slept for about an hour, we were both in hangover hell and when we had to get on a boat to the island we didn’t have any water or sun cream which meant we got sun burnt and embarrasingly, less than an hour into the crossing I started to be sick. I had heat exhaustion and it carried on until the next day. I hardly got to see any of Ko Samui but I learnt my lesson, drink plenty of water and wear suncream!

Full moon party!

Now we were with the girls we went to koh Phagnan for the Full moon party! Initially I was worried that it would be very manic and over rated - a bit like new years eve but I had the most incredible night. It was after this beach party that I realised how care free I felt. For the first time in 18 months I wasn’t worried about anything. Perhaps seems weird being in a different country and feeling like that but I was just having an amazing time with my friends and I was relaxed. We rented a jeep on this island and went chasing waterfalls, they were all dried up so in the wise words of TLC i would suggest ‘Don’t go chasing waterfalls’

Paradise

From Koh Phagnan we went to Ko Tao  we instantly fell in love with this island, we sunbathed on the beach and swam in the sea, Lis went on a scuba diving course with her dad who flew over and we decided to do a day trip snorkelling. When we booked it, I said to the girls, ‘I don’t know if i’ll be able to snorkel but if not I’ll just sit on the boat’ I had no idea that snorkelling would end up being the easiest part. When we arrived at the boat the only way to get on it was by stepping down the side of a wall onto a tyre that was hanging from it and floating around in the sea and step onto the boat as the boat hit the tyre. I was watching all these fully able people get on the boat and knew there was no way I could manage it safely. I had just decided to go back to the hostel when a thai man said ‘no no we’ll get you on’ I was a bit sceptical but figured why not but when they put me on the back of a pick up truck i didnt know wether I should laugh or cry. They drove it to the edge of the pavement where the drop down to the boat was and lowered the back of the truck, (i should mention the boat had a roof) before I knew it the boat bashed into the truck and I was stepping onto the boat into the arms of two thai man who dragged me across the boat to a hole with a ladder to climb down, as I got to the steps a boy who we had met on the beach and been with on way there was making his way up to see if I needed any help, it was very nice to know that someone I barely knew was so willing to help me out, these boys would quickly become our island buddies, one of them would soon tell me i was the most impressive person they’d ever met, it felt amazing for someone to say something so kind and to know that they meant it. When it came to snorkelling it was suprisingly easy, of course I wore a life jacket (im not stupid) and Megan stayed with me practically the whole time. We had lots of fun and saw lots of pretty fish and I felt incredible. I know I wouldnt have been able to do this if I hadn’t asked and asked and asked my physios to get me back in the pool and I am incredibly proud of myself for always fighting for what I think is right for me on my road to recovery.

Koh Tao - Krabi

After a week in Koh Tao Me and Sarah left the girls to go across to Phi Phi, we decided to break the journey up with 2 nights in Krabi so we could go elephant trekking which was absolutely amazing! Getting on and off the elephant was petrifying but with a lot of help I managed it and even got to sit on the elephants back! 

Party Island Phi Phi

 After Krabi we left to Phi Phi, we expected it to be a chilled island much like koh tao but how wrong we were! It was the sort of place where if you werent drinking you were the odd one out (we got called weird for having a sprite instead of a bucket) and although it was heaps of fun when we did go out, it also meant that we slept all day. We found the ‘Reggae bar’ there which we went to almost every night, they had thai boxing and sarah ended up in the ring, she had a split lip and a black eye and I have a very hilairious video to prove it, poor gal! It was on this island that I experienced being hit around the head for the first time since my stroke and it couldnt have happened to a worse person. I had been drinking a bit and had gone to sit on some seats next to a thai girl. In my drunken hayze  I had forgotten that thai’s find feet offensive and put my feet on an empty seat next to me, unfortunately pointing at the thai girl. Next thing I knew I was covered in beer and jumped to my feet to immediately apologies but also to leave as she had become quite agressive, as I turned around something hit my head, I still don’t know what it was but I know it came from her as she quickly got carried away by a member of staff. Mean while I started crying and a guy I had met earlier came over to check I was OK. I wasn’t. I was freaking out. I had a huge lump developing on my head and in my drunken state became quite histerical. This guy picked me up and took me back to my hostel, helping me calm down, breathe properly and stop crying. I will always be thankful that he didnt just leave me, again an almost stranger went the extra mile to make sure I was OK and although I will always be mortified he was my thailand hero. Luckily my physio turned friend from Hospital, Adam was also on hand via whatsapp to tell me to calm down and it was him that I believed I was being silly to freak out. When I woke up the next day I knew I had over reacted but I was genuinely terrified that something was going to happen and I knew that thailand wouldn’t be a great place to get into any ill-health.

I have hundreds of other stories I could tell, many about near death experiences, but these are the ones that stand out to me, I’ll finish with the story about the flight home… 

We were devastated to be leaving and I personally could have spent at least twice as long in Thailand but we boarded the flight and prepared to come home. The food was disgusting but the flight was OK until we had to swap again in India, New Dehli this time. We had a bit longer to get through security and even had time to get a dominos (hurrah!) As we went through security I began to notice a lot of people looking at me - nothing im not used to, especially when using special assistance wheelchairs but what really annoyed me was at the passport check infront of the rest of the passengers the guy said ‘Whats wrong with you?’. ‘I dont have to tell you that’ I replied. I was annoyed as you don’t have to disclose why you need a wheelchair and certainly not infront of a plane full of strangers, they eventually dropped it and let us through after looking at sarahs passport and being confused as to why I didnt look like her…nightmare. When we had to get our bags scanned the woman said ‘give me your hand’ ‘no’ perhaps I was was already aggitated but the last thing I wanted was some woman grabbing my partially paralysed hand. I had honestly never felt more like I was in a zoo in my life. Maybe I over reacted but I cant have been the only person to have ever passed through airport in a wheelchair. I can tell you one thing though, I now have no desire to visit the country. 

All in all I had a fantastic time and came back feeling very relaxed, I met some lovely people and realised that for most, what i’m going through wasn’t an issue or a reason for a cheap joke. My confidence soared and I am so excited to start planning my next trip. I’m very thankful for Sarah, Megan and Lis for being such amazing friends throughout Uni and continuing to be when my life took a different path to theirs. I couldnt have done everything I did without them and Im also so thankful to everyone i met that helped me out from words of encouragement to carrying me home from the beach. 

& thats it. Thailand 2012 essay.

Nice to meet you

Jessie J has an autobiography coming out next week and today the daily mail online posted an extract from it. It just happened to be the bit where she talks about her health. I can’t even remember the last time I cried about my stroke but this made me sob. Brings back some scary memories! Can’t wait to see her in February, 2 years to the day of it happening…coinkidink!

So I’m back from the land of Thai now and have plenty of happy exciting tales to tell but first of all Im going to tell you about the absolute drama I’m having with the NHS at the moment.

I’ve been in a clinical trial for just over a year now to determine wether or not having PFO (hole in the heart) closed is as effective as being on blood thinners. I was placed in the blood thinner group which was fine for a while but the reason the drs think I had a stroke is because a blood clot got through this hole and with all the dead arms and funny turns I’ve been having this tiny little hole has been playing on my mind. I’ve decided that I want to pull out of the trial and get it closed. It’s not a decision I’ve taken lightly, I mean who wants to have a heart operation? But it seems like the best choice for me, to know that the one risk factor I have left is no longer there. I understand that there’s no proof I can come of the medication because of it, but that isn’t the point. It’s an extra security that I think I need mentally.

So my GP referred me back to my cardiologist to discuss it, after explaining all the reasons why I want it closed the dr said OK I’ll put you on the waiting list. About half an hour later I had an answer phone message saying we needed to rediscuss. I knew this meant they had changed their mind. When we got back to the hospital they told me I needed to have an MRI scan and talk to a different doctor before being put on the waiting list. I explained that seeing my MRI wasn’t going to change my mind and everyone else I speak to who had a stroke with PFO have had it closed and I didn’t see why I couldn’t. I’m not stupid, I know it’s because it will mess up their trial statistics.

The reason I’m most annoyed about this is because when I agreed to be in the trial they said I could pull out at any time and have the hole closed. I now feel completely mislead and betrayed as its clearly not my choice at all or at least they are going to do everything they can to try and change my mind.

Has anyone had a similar experience to this? Or know what steps I should take to convince them to close the hole?

Following my second interview on weds 15th for the channel 4 trainee scheme I received an e-mail today to say that I had been unsuccessful on the scheme. They invited me back for an interview at a different company called tiger aspect but unfortunately it’s next week and not so unfortunately I’ll be sunning it up in Thailand.

I asked for feedback from my interview and to be honest I am totally baffled by most of what they have, firstly they felt I was very into radio and didn’t really show a desire to move into television which I totally don’t understand, I think this may have been caused by my lack of experience in television but I spoke about all the reasons I wanted to work in television so really don’t know how this didn’t come across? they also said I wasn’t prepared enough and didn’t know enough about their programmes, at the moment I literally don’t know how I could have prepared more as I read up about and watched a variety of their shows and read interviews from people within the company and im not sure what else i could do? If anyone knows what else i should have done please let me know, the bit of feedback that makes sense to me is that they felt they had to help me a lot with the questions which I also felt as I was nervous, and it was my first graduate and post stroke interview so I didn’t really know what to expect other than what I read on the internet and spoke about with friends in the industry but the first two reasons have seriously baffled me!

To be honest, I felt kind of relieved when I read the e-mail as I was worried about the long hours and the commute and whilst I want to move to London I think it would all have been a bit much as my first job. I have also got a few opportunities coming up that I am excited about, the involvement with Nick Ede’s style for Stroke and a possible work experience within the media team at the stroke association. When I get back from Thailand I will start applying again but hope to find something part time instead of full time. I’m incredibly proud of myself for getting as far as I did and in a way I know that although i think the role was, the company wasn’t right for me. Now for 3 weeks in Thailand. I’ll update you when I’m back.

This is Sarah’s first video diary of her recovery, I think it was filmed about a year after her stroke which left her with aphasia. (see previous blog) I didn’t know her back then but her speech now is just so different it is incredible (see her latest update). 

Something I forgot to mention in my previous post is that strangely enough Sarah was on BBC Breakfast the morning after my stroke and my mum can remember my Grandad coming to the hospital and saying there was a young girl on breakfast TV that had also had a stroke. I still find it crazy that it turned out to be Sarah and I can now call her and her family friends. 

Imagine knowing what you want to say and being physically unable to form the words or trying to speak and not being able to remember the words that you want to say, what something is called or where you want to go. More than this you can’t read, write, count money or tell the time. How would you communicate? This is what can happen if a stroke damages the part of your brain that controls your speech.  This part of my brain wasn’t damaged but since my stroke I have made some great friends who were affected in this way and I think it’s about time I posted properly about it.

On my way home for my dads birthday this week I stopped off in Stevenage to go for lunch with Joanie, Sarah and Coralie Scott and Sarah’s personal assitant. After speaking to Joanie and Sarah online for a while the stroke association arranged for us to meet at Buckingham Palace for the Queens Diamond Jubilee picnic and concert. Sarah had a stroke aged 18 when she was reading out loud at sixth form and as she was reading she lost her ability to speak and felt pins and needles in her right arm before it fell to her side. The right side of her face dropped and her classmates recognised the symptoms from the act FAST campaign and called an ambulance, different to my experience where I was walking alone and had no pins and needles or realisation that I was having a stroke. Although the after affects of our strokes are very different, we both had Ischemic strokes caused by blood clots and now have very similar attitudes towards what has happened to us, both with positive attitudes and doing as much as we can to recover and get on with our lifes.

I wanted to write a little about Sarah because when we were at lunch we spoke about the lack of awareness around aphasia and whilst i’m not sure how many people this post will reach, every single person who becomes aware of it is a step forward and I think it’s important to talk about every aspect of stroke, not just the parts that affect me. Sarah’s mum Joanie also had a stroke last year and all three of us have PFO’s (hole in the heart) although Sarah and Joanie have had theirs closed I am still waiting for a decision on what to do with mine, the whole family are ridiculously lovely and just incredible and it has helped me a lot to be in contact with them. Sarah’s speech seems to be continually improving and there seemed to be a huge difference between monday and the time we partied with the Queen. They keep video updates on youtube of Sarah’s recovery which you can find here http://www.youtube.com/user/SymphUK/videos and I’m going to post her first video which will hopefully encourage you to watch the rest. 

About three weeks ago I posted about an assessment day I was invited to at Channel 4 for a researcher role in a Disability Trainee Scheme. I’m absolutely over the moon to let you know that I have been invited for a second interview with Objective Productions who the role is with (think Derren Brown, Peep Show, Fresh Meat…) and I am down to the final two!  It’s happening tomorrow and I have been preparing like crazy so please cross your fingers for me!

I thought that I would tell you a little bit about how I’m feeling about finding work and how the stroke affects getting a job, it’s complicated so try to bear with me.

As a 22 year old graduate, now is the time to be pursuing my career, trying to get my foot in the door so that in the future I can work my way up. As a 22 year old stroke survivor I know there is still a lot of recovery ahead of me and that is hard work in itself, not to mention time consuming!. The truth is I am so ready to start the next chapter of my life. I know I cant close the door on my recovery just yet but as long as I can manage to keep improving whilst working I think a job would do me a whole lot of good. Every little bit of normality I can drag back will be helping my recovery in one way or another.

However, for now at least I know I will need a little bit of leniency with full time working hours, It may mean being able to work from home, having a morning off every so often or even working shorter hours.You might ask why I don’t just get a part time job? they are rare within the television industry and the ones that are available are often only very short term or even unpaid. Although I spoke about this in my initial interview I am honestly quite petrified about asking for the lenience, I don’t want a company to hold it against me for two reasons, firstly I know I can handle it with a little bit of understanding and secondly, I am constantly improving and whilst I might need this now, in a few months time I may be completely different to how I am now. With the limited movement in my hand a researcher role is kind of ideal for me as the runner route is pretty unfeasible and if I was to look outside the career I want to get into, being a waitress, bartender and sales assistant are pretty much right-offs too, as much as I’ve learnt to adapt, I don’t think shops would appreciate my folding clothes with the help of my mouth. Personally I don’t see why I or anyone else who is in reach of their ideal job should settle for a call centre, the only typical part time role I think I could physically deal effectively.

Maybe i’m worrying to much and I hope that with it being a disability trainee scheme this will all be taken into account and anyway lets face it, I don’t do things by halves!