On September 17th me and my cousin Kat attended Brighton’s brand new festival called Shakedown at Stanmer Park. I was told that to take a carer for free all i had to do was take my DLA forms, which i did and although we were let in I was dissapointed that the girl on the entrance didnt have a clue what we were talking about. Luckily she was lovely and let us in without a fuss but i could help but feel like once again ‘disabled’ festival goers had been forgotten about. Having not used my wheelchair for I can’t even remember how long I am now very reluctant to use it, so I didn’t, we took a camping chair just incase I needed to sit down and the floor was wet (but it wasn’t) The festival site was relatively small and I was able to walk from stage to stage however had I been how I was at Glastonbury I think I would have been severly disappointed with the disabled set up, from the unawareness at the entrance to a tiny viewing platform that was so far away from the crowd that using it would have meant being massively away from the atmosphere, to the single disabled toilet that drunk girls holding their flat stomachs and claiming they were pregnant were allowed to use which by 8pm was overflowing and un-useable. It left me annoyed knowing that many wheelchair users can only transfer from the wheelchair to the toilet and if this was the case for anyone there they would not have been able to use any other toilet. I think unless you have spent time in a wheelchair it is very easy to overlook how it might feel to be in a situation like this, which perhaps explains why the organiser may not have really thought through a wheelchair experience at the festival. Despite all of this the day was incredible. I was very pleased to have not taken the wheelchair and not even use the camping chair! Dancing to example, eating dirty festival food and finally drinking that festival cider! Experiences like this make me realise how far I have come in my recovery even since Glastonbury in June but also the lack of understanding there seems to be around making people of all abilities feel comfortable at events.
My friend asked me the other day if I dream that I am fully recovered or if I am as I am in life. I have had dreams that I am better for probably months now, I’ll be walking down the street and suddenly that walking turns into running and I stop to take my splint off and I am free again. Last night I had 2 very different dreams. One was that I went to see Jessie J and I still had my splint on so it seemed very realistic. the second was that I was squeezing a ball with my left hand and I started wiggling my fingers. It makes me want it SO bad and I always wake up and check just incase but no luck so far. I never thought it was worth talking about before but since someone asked I thought I would share it.
When I woke up this morning my little finger started twitching. It probably doesn’t mean anything but it felt so weird!!
I have lots to blog about but yet again my internets down. You can blame virgin media for that one. They will include Shakedown festival, a trip to southampton, more injections, private Physio and freshers week so look forward to it x
Everytime I tell someone new that I’ve had a stroke it seems the first words that come out of their mouths are “but you’re too young.” The fact is i’m not even close to being too young with hundreds of children having strokes every year. Please take the time to sign this petition
Each year several hundred children suffer a stroke in the UK. The Child Stroke Support Group is urging people to sign its petition for a national register of children who have suffered strokes.
Having a register will monitor how many children are having strokes, the causes, outcomes & the aftercare received. This will help experts
I’m back in my little flat in Brighton now after 2 lovely weeks at home. I hadn’t been home since Easter and it’s a bit surreal comparing my latest visit to the one in Easter. Back then I was still heavily depending on my wheelchair, still taking it to watch friends play skittles and using it to go around shops or to the car. This time however, the wheelchair was nicely tucked away in my flat in Brighton, right next to my walking frame and sticks. Au revoir.
I spent so much time with my friends, which meant a lot of food and cinema trips and catching up with people that before this had become distant fir various reasons. It’s amazing how much this whole thing has brought me and my friends/family together. They have been my rock through all of this and I really don’t know if I’d have stayed this strong without them. It’s equally amazing the ‘friends’ who havnt been making the effort, or have failed to understand what im going through. Whilst I dont expect everyone to run around after me, it’s been almost 7 months now and if you’ve had the opportunity to see me but havnt because you’d rather be on a night out then please be assured that I no longer need you in my life. It’s become very clear who deserves my love and who doesn’t and it’s made it surprisingly easy for me to let the ones who dont go.
(thanks ryan! :D)
I would really like to post a screen caption of this but as my fingers are stillnot working well I can’t press all the right buttons on my lovely macbook so I can’t i’m afraid. Anyway I recently began speaking to a fellow stroke survivor on Facebook and she posted that she had walked 0.6 miles less than a week after coming out of hospital. I’m not going to lie I was jealous and wanted to know how far exactly I could walk. Yesterday, I went to see my cousin who lives 0.5miles from my Grandads house so I asked her if she would mind walking with me there and back. We walked there and I was a little tired so we went in and ate some Vienetta and headed back after about half an hour, we forgot to time the way there but walking back took me about 20 minutes and when we got back I felt suprisingly alright. Today we went to see One Day at the cinema which is 0.4 miles from her house so I walked there and back too. When I get back to Brighton I’m planning on catching busses away from my house and walking back so that if I am tired I will be at my flat rather than walking into town and catching the bus back. I’ll be running in no time.