Life//Adventures

“I refuse to settle for anything less than a full recovery,” he said. “I have the will and discipline to continue to fight to get better. I knew even then—four years ago—that I was going to reclaim my life.”

taken from http://www.stroke.org/site/PageServer?pagename=movement_garrett

Visit Garrett’s website here to see his video blogs and information on different equipments, 

It’s only been 18 weeks since my life was thrown into this ridiculous situation and i’m currently laying in bed feeling disgusting (but no more disgusting than a hangover) after an incredible weekend at glastonbury festival. When I first had my stroke I worried that I would have to give up my ticket but the more I recovered and with my friends support I realised I could still go. I applied for disabled access passes and for a free pass for a friend to take me as my carer which all worked out to be a god send. If it wasn’t for Rosie I literally don’t know how we’d have managed. she is a woman of steel and I could never thank her enough. My therapists told me I would be tired the whole time and increase my tone & would miss loads of bands and have to nap every day. I literally lose faith in them every step I take. I had next to no sleep on weds and thurs which meant I had to have a 40 min lay down on friday in a wierd tent church which was hilair and the only nap I had over the whole weekend which I reckon is pretty standard for any festival goer. I stood up and danced to every song I knew, saw almost every band I wanted to see and I even found myself walking in the mud when the wheelchair got too stuck to move it and my tone is no worse than if I had just had a good physio session. I’m pretty sure they forget i’m 21 not 60 and it makes it really hard for me to have faith in the treatment and advice that they give me. 

Being in a wheelchair at glastonbury was interesting to say the least. Rosie was an absolute trooper. Obviously they can’t control the weather so it was inevitable that it was going to be muddy and difficult to get around and although the campsite was brilliant and the viewing platforms were handy I have a list of complaints which I plan on sending to the disaility co-ordinator. We were told that there was a shuttlebus every 15 mins to take you around the festival site, this turned out to run once every hour and a half and had only 2 stops that werent at the campsite so were pretty much useless for us and it was quicker to just soldier on, when we did try to use them not one steward/security or medical tent knew where they stopped. Another was that we were given the wrong code for the disabled toilets and many members of security were ignorant to how many girls it took to get me through the mud. the worst thing that happened to us all weekend was that we were using a disabled walk way to get behind the pyramid stage and to the viewing platform, halfway down it a security woman lead us to the front of the stage. the head of security then started shouting at us saying we werent supposed to be there and tried to make us all stand where we couldnt see. I went mental and after he had sent 3 of the 5 girls who were helping my wheelchair through the mud away told him I didnt want to be where I couldn’t see and that he had to get someone to take me to the viewing platform as he had sent my friends away. He was adamant that the 2 girls I was with would be able to get me there. after talking to me like I was a piece of shit and me screaming at him for an unnecessary amount of time it wasnt untill I started crying that he realised he had to do something and another security guard on his lunch break offered to escort us to the viewing platform. The mud was so bad that it took him and another security man to get us over to the viewing platform. so much for rosie and megg being able to get me there. Once we were where we had originally been heading this was a pretty easy situation to get over and we enjoyed tinie tempah as we had planned.  Overall the facilities were pretty good and stewards were lenient about letting friends come on the platforms with me when they weren’t to busy which was helpful for me as I have a lot of friends!

Whilst we met some idiots like George (the security supervisor) we also met some amazing people, a lot of random boys helped push me through the mud whilst others exclaimed “she’s not disabled” (someone better tell my doctor) or asked if my legs were real (well i do have cracking pins), some security went the extra mile to make sure we got back to the campsite safe by organising lifts or pushing me whilst others were like George, and it was amazing to meet other determined people with disabilities. It was interesting to hear everyones own stories and to meet other people enjoying the festival in wheelchairs who were around my age and were often returning to the festival for their second or third years. To be honest I think the festival was probably harder for my friends than it was for me although I found it difficult when people would stare or drunkenly say things like “i wish I was in a wheelchair” I realise that some people are just ignorant to disabilities and by smiling at the people who stared I made it clear I didnt care what they thought and carried on having a good time. The absolute hardest thing for me was not drinking.

I certainly wouldnt suggest going to glastonbury in a wheelchair unless you have friends or family who you trust love you enough to keep a smile on their face and deal with getting you around in the mud. but if you do then I urge you to go for it. It will unleash a whole new wave of determination. As a girl said to me “It gives you a sense of belonging, in the real world you would rarely find yourself surrounded by disabled people with similar interests and determination to not let their disabilities stop them having a good time”

I could go on forever about the things that happened at glasto but I think I’ll stop now and upload some photos instead. I hope what i’ve written makes sense., I am so partied out its ridiculous.

I had to go to my GP so he could fill in my Disability Living Allowance claim form, I’ve only been disabled for 4 months now but whatever better late than never. I’ve witnessed a lot of students bad experience with my particular GP and was preparing myself for the worst. He asked me the general questions ‘how far can I walk’ ‘how tired do I get’ ‘what does my disability effect day to day’ and then he said “it’s affected your face hasn’t it?’ now I’m not sure what relevance this has to how disabled I am, does my face mean I can’t walk? For the record the left side of my face is hardly affected but it is something I am incredibly self-concious about I am aware It doesnt move as much as the right handside of my face does but it’s something that I’m pretty sure isn’t worth pointing out (especially to a 21 year old image concious girl) and the drop is only really noticeable when I am tired or upset and rarely drops apart from that. 

I also had my blood pressure checked which was fine and a blood test which I was terrified about but turned out I could hardly feel.  

Another thing my GP said was that I am more likely to have another stroke because I have already had one. now this is something that has thrown me a little bit as my consultant told me I was no more likely to have another stroke than anyone reading this blog. One thing I have found with Stroke recovery is that most of what you are told will be contradicted by another professional. I have learnt to trust certain doctors/physios/nurses/therapists more than others and you just have to listen to the ones you trust. I can’t explain how I have chosen who I trust with what information, it is just something that builds up naturally. I suppose its kind of like there are some friends you would trust with your clothes and some that you wouldn’t. 

I’ve had a pretty hectic week again and my blog posts are slacking. The support workers have been working really hard at strengthening my leg and improving my balance. I can feel it working already, especially when I walk around the house without my stick. About a week ago I was really rocking from side to side but now there is a much smaller lean from left to right suggesting that my balance is improving. 

On tuesday I went to the beach and for the first time felt confident enough to tackle the pebbles. Im sure my physios would probably go mad at the way I was walking on them but the important thing to me is that I did it and it was so much easier than I had imagined and although I may not have been walking properly, if it boosts my confidence of walking on different terrains it can’t be a bad thing. 

Last Sunday my friend Jordanne took me into town to buy some new clothes for Glastonbury. We were planning on walking but it started to pour with rain and with me being in the wheelchair we decided to get a bus. This would be the first time I had got on a bus since I had the stroke and was something I felt very apprehensive about. I find with things like that everything is very over dramatic and to be honest I wasn;t completely wrong however I had no need to be as worried as I was. The bus driver was incredibly helpful as we explained this was the first time we had used the bus with a wheelchair, he got out of the drivers seat to help push me into the disable seat - asking other passengers to move so the chair could be positioned properly and just being generally friendly and helpful. It was so nice to go clothes shopping with a friend (although she was a bad influence and encouraged me to spend too much money!) she helped me choose nice clothes and even helped me try them on, I was suprised at how leanient shops were with having the two of us in one changing room, they usually make such a big deal if its two fully abled shoppers. One thing we did notice was that a lot of the shops were a tight squeeze to get around and we often had to push fixtures out of the way to fit the wheelchair through. It was over all a successful trip that ended with a bagelman (which does not have disabled access FYI).

one of the biggest problems I have with my arm is the increased tone it the muscles causing my arm to tighten up, especially making my fingers curl. I have found that I am getting good movement in my arm but by doing so I badly increase the tone in my hand. When my keyworker found out that the Occupational therapists from the first hospital i was in went on a course to learn a new way to decrease the tone by stimulating various poins on the arm she knew that we needed to try it out. I had a really busy day to ensure my tone was high to see if the treatment would be effective for me, they started at the shoulder then the elbow, wrist and knuckles we found that up to the elbow it really help my fingers relax but the one especially for fingers somehow managed to increase the tone in them but hopefully in future the elbow one will work enough to relax the fingers. they also gave me a new splint to wear over night to encourage my wrist to extend without my fingers curling so we’ll see how that gets on - hopefully i’ll be able to get to sleep with it on! 

It was quite strange seeing therapists from the first hospital when i was first told they were coming I was worried that I wouldnt remember them as I didnt recognise their names but as soon as I saw them I could remember their faces which was quite nice. They were really overwhelmed to see me standing at the top of the stairs and one of the first things they commented on was that my smile was back to normal - something they hadn’t seen before.

I am so tired today. My body was aching so much last night that I couldn’t get to sleep, pretty sure I nodded off for about 20 minutes - such a nightmare. As annoying that it is I know its a good sign that my body is aching because I had the hardest physio session i’ve had since coming out of hospital. they had me standing on my left leg taking steps forward and back with my right, It was really hard for me to do because I don’t trust my left leg with my weight at all but I managed it to the point that my leg started shaking. It sounds silly to push it s far but by doing it it really gets my muscles working and the more I do it the less I should ache and the easier it should become. They said it will help me regain a better balance, helping me walk with even strides and without a stick as well as helping control my hyper extending knee. so the aching and lack of sleep will be worth it in the end. They also did some work on my arm getting me to extend my arm and cover my friends faces on photographs while my physio held my fingers straight, apparently the problem I have at the moment is that my arm is getting movement back nicely but because I can’t use my hand my brain forgets to use it but I have been given some newtasks to try and start using my hand so hopefully that will start improving aswell. all in all i’m happy with my progress again 

I had my goal planning meeting on friday with the rehab team, my mum, one current housemate and one future housemate. Their feedback was all really positive and they said i’ve got the perfect attitude, i’m emotionally balanced and that i’m taking everything they say on board. I am really trying to understand everything they tell me, I figure the more I understand the better chance I have at doing things right to recover. 

They set me some goals aswell, I can’t remember all of them but one was to be able to walk to the bus stop & get on a bus by 4 weeks time, another was to be walking around the house properly without a stick and another which they think is the least likely for me to achieve is to be able to do my hair. With the next to no movement that I have in my hand I know its not the most realistic of my goals but they said if its something I really want to be able to do I have more chance of achieving it!

It was also Joe the physio students last day on placement which makes me sad. I wish these students would stop leaving my life. I really like having someone my age treating me, it makes it feel more chilled out somehow, I’m not really sure why or how but they really make me more comfortable with the whole situation. In hospital I couldn’t tell Adam was a student and as Joe got more confident he was really great aswell. Brighton Uni must be training them well..

I should have blogged about this on thursday but I’ve been way busy! I managed ti get my wrist to straighten from being bent down for the first time since the stroke! I was very excited and still am but I worrried that it was more to do with the tone in my arm than actual movement as at the moment I can only do it by holding my arm still with my right arm (if i don’t do this my whole arm moves before the wrist straigtens) I’m going to ask my physio about it on monday so I will let you know. When I showed my OT she literally squeeled so i’m guessing its a good sign anyway and hopefully with a bit of practice i’ll be able to move the wrist without holding my arm at the same time! 

Thats about as exciting as it gets progress wise. I’m finding walking much better with the walking frame, I can tell my leftside has to do more work and it makes me walk much more evenly, If I do a distance with the frame my tone stays much lower than if I do the same distance with a stick so recovery seems to be on the (slow road) upwards again. 

On that happy note I would just like to clarify - I did not start this blog to save the ‘chore’ of telling all of my friends how I am doing. It was for me to keep track of my recovery and to help raise awareness that strokes happen to younger people too as well as sharing my story of recovery at the age of 21. I appreciate everyone who has taken the time to read this blog and hope you continue to find it interesting but if you want to ask me personally how I am then please do, I do not feel ‘bugged’ and it is not a “chore” I am happy to talk about it with my friends and if I’m not feeling up to the conversation I will tell you. I know that my recovery can be hard to understand (even I have to ask questions about it) so if theres something you want to know just ask.

I went into Uni on Tuesday, something that I thought would be quite hard for me. As everyones so busy in the library I didn’t see anyone I know and headed straight up to speak to the student support worker who helped me talk about how I was coping and what my goals were. we discussed me eventually coming back to uni and he advised me about what to do if i wanted to see a counsellor. I was worried that I would have a breakdown talking to a support worker about what had happened but he was so helpful and understanding and helped me talk about the positives as well as the negatives I as feeling. Although I think talking to a professional helped it made me realise I might not be ready for a counsellor just yet. I’m quite lucky in that i’m such an open person anyway it’s not like I bottle anything up, if i feel something I show it as I once embarrassingly said to my housemate “I don’t have any secrets, but I do have a lot of emotions”

I then went to speak to my lecturers who told me they will do everything they can to help me be able to start uni again in january and that as soon as i’m ready if I want to start doing any work towards the modules I can and same with my dissertation and just to let them know anything I need to allow me to do it. It has made me really look forward to going back knowing that there will be so much support around me and i’ll finally get to experience third year deadline madness and library all-nighters,something that I know will be a nightmare but I wish I’d of experienced this year with all my media peers.

I am shattered. Mum came to visit me this weekend, we went for dinner then to see pirates of the carribean 4 on saturday night, Jonny depp is such a treat for the eyes, When I was walking to my seat the tone in my arm increased and I accidently tapped a man on the shoulder, I apologised (obviously) and he laughed and said it was Ok, but then he KEPT looking at me. I think he thought it was a pulling technique but it definitely wasn’t - he was ming.

On Sunday Mum took me shopping - I feel like such a spoilt brat. I had to buy some size 8 nikes to replace my hideous white shoefayre velcros so now i a basically playing opposites with Joey Essex (who wears his shoes two sizes to small) We went into UO and I had a walk around upstairs so I could look at the clothes properly and see my friends. I can’t wait to be back working in there!

I had OT and Physio on Monday morning. In OT i managed to get my hand to release from around the bannister which was pretty good. My OT thought it was amazing and she’s noticed that my brain-arm communication is much better when I am actually trying to do something productive rather than just doing exercises. I have found that when going to grab bottles in the bathroom my fingers open out especially when the rest of my body is positioned properly - it decreases the tone. Its often hard to remember to sit with my feet correctly placed and to put weight through my left leg but I need to keep remembering to do it - I can already see its helping my tone decrease. 

When my physio came later on and said “I want to ask you something but I don’t want to upset you” I couldnt help but be relieved when she asked how I felt about using a walking frame. OK so they are not very 21-year old fashion but i’ve been rocking a walking stick for long enough now, i’m kind of getting into the old lady look and if it will help me use my left side more and potentially walk better, further and help my arm I can’t complain.

My friends at university put a comedy night on to raise money for different strokes, a charity that are run by younger stroke survivors for younger stroke survivors. They have really helped me recently so I was really pleased my friends had chosen this charity. The night went really well and I got to see loads of my friends in a normal environment. we didnt take my wheelchair to the venue (though it was in the car juat incase) which helped it seem even more normal and I felt more like me. the comedians were all great and helped raise £200 for the charity so all in all It was a great weekend where I got to see improvements in my arm, a promising development with my walking aids and onlt a minor fake tan disaster.

since my last blog post on negativity I had a visit from my OT who wanted to discuss my goal planning meeting. My Great Uncle John turned up mid-session and when the OT left he asked her how I was doing and her response was so ‘mmm’ ‘arrr’ that once again I couldnt help but be upset. John hasn’t seen me for years and it wouldnt have harmed anyone to be like ‘yeah she’s doing really well so far’ as opposed to ‘she’s still got a really long road to go down.’ not even a ‘but she’s getting there’ was added. I’m not stupid I know that I have a massive amount of work to do and that it will take effort and time and I also know that no-one can tell me a definite on how much I will recover or a time scale that it will happen in but it would be nice to hear some positive feedback. 

After this John who is a catholic priest anointed me which I was moving although a little bit strange as I do not see myself as a religious person. but since im pretty sure anointing of the sick hasn’t done anyone any harm. I thought id put my inhibitions aside.

I was visited this morning by my support worker and student physio who had me standing without my splint and  with my hands on the kitchen surface infront of me whilst trying to keep the tone in my left hand down I was squatting to bring my knees over my toes. This is something I found mentally tiring but managed to maintain for a fair length of time. What I find difficult with this is that my knee hyper-extends and my foot trys to roll to the left - something that is also present in my right leg and takes a lot of effort to over ride but is something this exercise will help improve. At the end of the session I spoke about how I felt the team had taken quite a pessimistic aproach, I was reassured that they are doing everything they can to give me as much therapy as possible and think I am doing well with the tasks they are giving me but that it woukd be “unproffessional” to try and give me any long term predictions.  Fair enough I suppose. They are going to feed back to the rest of the team so hopefully they will take it on board and start encouraging me a little more.

some examples of what I have percieved as quite negative are 

“becki, who wants to run before she can walk” (in a jokey mannor) 
“you want to go to glastonbury…that’s soon isn’t it? that’s quite a big goal”
“if it was 15 years ago you would have been told to stay in your wheelchair to avoid making it worse”
“i’ll be working to undo what you do to yourself” 

i’m not sure these make that much sense out of context but I found them quite indirectly negative.

I also contacted Different Strokes about this and a lady replied saying she had experienced a similar thing when being referred to the community rehab team and added

“My personal advice is to continue as you are thinking positively and making sure you rest well and keep your muscles long and persevere with your exercises because in my case recovery goes on for years”