Monday 30 December 2013

Goodbye 2013

So it's hard to believe how fast this year has gone and now 16 months later, I really do feel as though I've finally overcome my stroke emotionally. It is something that I am now able to accept and I actually no longer resent the adapted me. It's been a long journey to reach this point but something that I am finally happy to keep in my past and allow myself to move forward. The biggest thing I have learnt throughout this while experience is to appreciate those around you a lot more and to realise that having a stroke doesn't always mean your life is over, it just means you have to be ready to face one of the biggest battles you will encounter in your life and if you persevere, have determination and a support unit behind you, you will reach those achievements, so don't give up :)


Wednesday 31 July 2013

Over a year later...

It's over a year ago now since I had my stroke and in terms of all the important health stuff, I'm doing pretty good. I've made adaptions to my diet, which has seen an introduction of meat (in small quantities) into my diet as well as much more greens because whilst I may have thought I was relatively fit last year, I don't think I was actively taking measures to ensure I was having a balanced diet. For example,  I used to regularly skip breakfast due to being so busy and as a teacher I didn't usually get home and ready to eat until late which meant I was eating at the wrong times too but now I'm absolutely on top of all those kinds of things, I make sure I have breakfast now (even if its really small, occasionally I'll just have some fruit), I also make sure I make the time to eat my lunch and dinner on time. Another thing, I've actively kept my eye on is my liquid intake just to make sure I'm keeping hydrated. Thankfully, I've had no headaches or anything like that for a good few weeks now which is definitely a positive.

Some things I have found hard though are things like being eased back into my own routine, which wasn't helped by the fact that my employer failed to comply with phased return to work procedure, instead they didn't respond - I guess for them, they just couldn't care less or appreciate that the circumstances for my time away were beyond my control. I did eventually receive a response 8 months later and was told that it was down to a change in leadership. I'm not entirely what I should do about it, on one hand I don't want the stress, but on the other I think it's absolutely disgraceful that they could do that to an employer and I want them to acknowledge that their actions were wrong in the way they dealt with me.

Obviously that has impacted my return (or rather non return) to my MA studies. I'm not able to financially afford the costs and will have to wait until I secure a more full time and permanent vacancy (whenever that will be). All these things, have had a hugely negative impact on me emotionally and psychologically as I'm constantly left feeling like I'm not good enough or frustrated that my life has been turned upside down and the aftercare isn't really that great. I think it's assumed that someone of my age is okay to be left to their own devices. I have really struggled with trying to get my head around the fact that this has completely rocked the path that I had created for myself and now I'm lagging behind so much and it's almost as if because I've physically covered, then it's all okay when infact it's the complete opposite. I tried to convince myself of that but occasionally when I'm caught off guard, I'm reminded how hard my life has become since having my stroke.

And yes, you could say I'm being incredibly cynical, but I think it's easy to say that from the outside looking in. I know that I am so lucky to still be here and to have made the near enough full recovery that I have, but part of me still isn't just content with that, I had bigger dreams and aspirations for myself and I still have every intention of reaching them, even if it means that it takes me years.

Wednesday 6 March 2013

Stroke Care Teams

I have had the pleasure of speaking to many people who have been affected by stroke whether that be from people who themselves have suffered a stroke, or family members that understand the difficulties faced during rehabilitation periods to workers that have to work with stroke victims on a daily basis. I would like to share Amy Kelland's story who is an incredible care worker who rehabiltates stroke victims, and she has been kind enough to write a short testimonial detailing the types of patients she works with. If people donate to stroke organisations and help promote stroke awareness then it'll help give institutes the best equipment to ensure the best rehabilitation for all stroke patients:


I work as a domiciliary care supervisor.  In the community we have a large amount of service users who are stroke survivors.  I feel that the care staff sometimes find working with a stroke survivor as a daunting task especially when faced with someone with communication difficulties.  We have service users who cannot speak at all following a stroke.  People who cannot express what they want/ need e.g. mixing up yes and no, asking for a cup of tea when they want coffee.  This can become frustrating for both the care worker and the service user.  I encourage the staff to have patience and to actively support that person to get what they want/ need.  It can be a long, difficult road for some people.  But, I feel with the correct amount of support and time the service user can have massive benefits and improvements. 

The other big difficulty many of our stroke survivor service users face is mobility problems.  We have service users who have difficulty walking and also difficulty with fine motor skills such as doing buttons up.  We encourage our service users to do as much as they can for themselves, we help them with any tasks they find too difficult.

It is all about re-abling the person to live as much of a full life as they can after a stroke.

 


Learning to walk again!

http://telly.com/0RGXZB

Thank you

Whilst I know on this blog I have shared a lot of the bad experiences I had, I have never once failed to recognise all the good experiences and there were lots of them. I just want to take the time out to thank those members of staff at New Cross Hospital and West Park Rehabilitation. Also my family and friends who have been incredibly supportive and just for being there. Today, I look back on then and I can't believe how weak I was, especially as now I feel physically stronger then ever before. I'm hoping to do a fundraiser in September to raise money for stroke to give something back after they've given me my independence and me back. I'd also like to thank those of you that have gone to the efforts of sharing this blog to help promote stroke awareness, I hope that by sharing my experience that it will open up people to the whole support unit that goes into helping stroke victims rebuild their lives and how strokes impact not only the person but everyone else around them. Please share your stories as I believe there isn't enough awareness out there especially for young people too.

Can I go yet? TAKE #53

It's ward round day and I'm trying to keep a cool head, I mean if I am being discharged today then the celebrations can begin but if not then at least I'm not left shattered (tad dramatic I know, but that horrible feeling you get in your stomach, that's what I'd get when I was told I wasn't going home that day). The nurse came in to inform what time the Doctor will be calling so I got straight on the phone to my mum and sister who are already on their way.

They get here and the Dr and his team come in and he asks me the usual questions and I keep giving him the same answers. 'What do you want?' he asks, 'I think it's evident, it always has been' and he laughed and admitted he wasn't surprised to hear me say that. He asked the family to see if they were comfortable with it. Of course, they were and then he said the words; 'We'll get you discharged then'. I'd already had my bags packed and was ready to go but it wasn't as straight forward as that, at the earliest I'd be leaving tomorrow and he needed to get the results of the EEG before I was officially discharged. Complete FML I thought to myself, this was surely torture. I've finally been told I'm being discharged but I've just got to follow the discharge procedure. I thought that's what I'd been doing all these effin weeks. Grrr!

Next morning, the results came back from the EEG which confirmed that whilst I didn't have epilepsy, I was at high risk of possibly having another stroke in the next 6 months because of the trauma to the activity in the brain as result of the stroke. So, I was sort of out the woods or whatever that saying is. I've got to be going home now surely? Oh no, there was some kind of delay with getting the correct medication for me to leave with so my wait was prolonged. Eurghhhhhh.

Finally hours later, discharge letter in tow and all the needed medication in my bag it was time for me to get the hell out of there. It felt like I was dreaming but I finally did it. Six weeks later and I was out and whilst I wasn't 100% recovered, I was making the necessary steps forward to getting there and being home was definitely going to help that if not physically, definitely mentally.

What friend's are for :)

Monday and I've got two days until the 'possible' discharge. I've been on my best behaviour (ish) all week and don't even really look like I've had a stroke anymore except for the flacid arm. I had movement in the hand but was unable to lift the arm yet.

I hadn't seen Gav in almost 2 weeks now and was really missing him and was venting a lot of my frustrations on him. Part of me was worried that he'd see sense and find himself a better girl with two arms and legs that worked. Thankfully though Nat came to my rescue, she could see I was upset and frustrated with everything, especially Gav so she came over and we went for fish and chips in the park. The nice nurse let me go plus Nat's a nurse so if anything was to happen I was in the best hands. It was nice to just chat and vent about everything because Nat's the kind of person who sees the good in people so it was good for her to remind me that it's a tough time for everyone involved and that Gav not being around much was down to his hectic schedule and nothing against me. That made me see that this whole thing wasn't just hard for me to deal with but for those around me too.

Anyway, after saving me from the dog off the leash, Nat took me back to the hospital and headed off. Kiran was there waiting with food and drinks and fresh clothes and my day just got even better, she was telling me how much I'd improved and that she reckons I'll be out tomorrow, I wasn't as confident though because everytime I built the excitement up, it'd come crashing down with the realisation that I'd be stuck in these dreaded four walls for at least another week. That night I was eager to get to bed just so that I when I'd next wake up it'd be ward round day y and then I'd be put out my misery once and for all...

Can I go yet? Pleaseeeee?

Things were on the up, my leg was far more aligned and the feldenkrais was definitely helping the arm improvements and now I was starting to get more movement in my fingers, I was able to move them slightly, there was a glitch though. Instead of moving on their own, I was only able to move them altogether. It was a start though, so I was very happy with that. And with all this positive progress, I just hope they would give me the answer I wanted on the ward round and that'd I be allowed to go home forever.

And yep, you guessed it, no such luck for me. I was deflated from this news because I was really expecting to be discharged this week. Even the physio's were confident of it. I was begining to tire of this weekly disappointment and requested to speak to the doctor and informed him that I wanted to discharge myself. He informed me that a patient cannot discharge themselves in rehab because they aren't discharged until a Doctor agrees to it. They said they would review my case and come back to me in the afternoon.

He came back at lunch but didn't give the new I had craved for so long, all he could do is look at 'possibly' discharging me next week. As you'll have probably guessed, I wasn't pleased. And from then on I only went to my physio sessions and my ot sessions, and just remained in my miserablr state. So the countdown begun on the next 6 days.

Stimulators aka magic!

 
So today, there was more noticeable improvements with my arm, with the stimulators on I was able to clench on to a ball and release. This was definitely a progressive step forward and physio's told me I just had to continue trying to bring back the feeling and movement as much as we could. I was nowhere near bench pressing standards but I was getting there and was a step in the right direction. Thank you werid stimulator machine thingy :)

Roll on the weekend

Gav came to pick me up and I was just grateful to be out of this place. He was shocked that I didn't need the wheelchair anymore and that I was independently mobile, he'd missed a lot in six days, and off we walked off the hospital grounds. When we eventually got to home, it was so good, I assumed my normal place on the settee, gav was giving all the head rubs in the world and mum was spoiling me with food and drink and fussing over me. It just felt so good to be home, I went upstairs to my bed and Gav soon followed after and it just felt so nice to be in my own bed, with my pillows and my cushions and my boy. He just cuddled me for ages and I'd fallen asleep, I was so comfortable and relaxed for the first time in a long while. I wanted to hold on to this feeling and just bottle it up so that I could take it with me when I was feeling rubbish at the hospital.

On Sunday though, I was just constantly checking the time because I knew that at I'd have to leave at 5 to get back in time for 6. I wasn't able to enjoy today as much because of this and sure enough at 4:30am when Mum had started to pack up all my stuff I bawled my eyes out. 'Can't I just stay' I asked, my sister just gave me the biggest hug and said she'd promise to help get me out of there as soon as because I'd demonstrated that the adjustment can be dealt with without too much trouble. That night I got back to my room and didn't even bother doing anything, I just went to bed at 6 holding onto the lovely memories I'd had with Gav, Kiran, and Mum, hoping that the next week would be the last week that I 'd be there.

Sandy bubble!

Got my bubble bursted by the idiot nurse on the weekend. Fuelled with anger and hatred, I pushed myself into my physio, I told them how I was feeling. That the odd one or two nurses on the ward with power trips were incredibly patronising and condescending and that they were taking away any independency I felt I was gaining. I informed them that my mental and physical well being was being affected as I was constantly left feeling demoralised by these certain members of unsupportive staff. There was also the Dr who I first met that was wildly reluctant to let me have any overnight weekend stays at home. Enough was enough though, and I just let it out in my physio session on Monday. They distracted me by giving me more excercises to do whilst discussing what they felt was best for me to do next, they tried to reassure me that I just needed to concentrate on the positives and not let those negative things impact my recovery.

After their meetings on Tuesday, they informed me that I might be having a weekend visit home but that I needed to complete a few tests and the OT and Physio would have to go home to carry out some observations to put in place any amendments that needed to be made and that was booked in for Thursday, so I was going home (breifly) in 2 days - Mega WIN! So, I managed to complete task one which was stepping down from one step and then walking around in the outside area adjacent to the physio gym, then secondly I had to combat climbing up and down a flight of stairs. I was really nervous about this and was worried that I wouldn't be able to do it. So, I took my first step up starting with my weaker foot, then I had to manage the elevation of being up on the slant with only a rail for support, and I just kept going and going and before I knew it, I was at the top of the stairs, and I was so confident that I didn't take much of a wait before battling going down them. I was so pleased with my achievements and how happy the physio's were for me really touched me too. They trusted that I was able to do it and helped me lock into that confidence that I had hidden away, I just wanted it to be Thursday now.

Thursday morning and Jenny and Alex come to collect me, I've text mum to let her know we're on our way and they bring the wheelchair out ready for me to sit in but now I was starting to walk a few steps without being shakey, I wanted to walk there myself. They reluctantly agreed but made sure they held on to my arms to support me whil I was walking and they still packed a wheelchair in the mini minibus/van thingy they were transported me in. Once we arrived to outside my house, I could see the door and my car and I was just over excited that I didn't even wait once they helped me out the van, I just started walking ahead and took the step up to get into the house, they were impressed and so was I, it took me a while but I did it and without any assistance.

Next, was to walk around the house go up and down the stairs, seeing if I could reach my bed and looking at whether I could manage getting clothes out of my wardrobe and whether I could get into the bath. Here they identified that I would experience some trouble and so they installed a board so that I could use to help transfer myself in and out of the bath independently. Everything was looking positive and it was confirmed that I'd be allowed home for the weekend.

It's Saturdayyy!

I got up so early morning and was sat ready waiting to be picked up from about 8am. My visit wasn't until Midday so I had a rather long wait ahead of me, it was a miserable day and looked really cold but I wasn't bothered, I was going out, and not like out in the patient transport van to new cross, I was going out for a few hours with the boy. It'd been so long since I'd had time with just Gav and was good to finally get some alone time with him. He's the kind of boy that I can talk about the silliest of things and he doesn't look at me like what the hell are you talking about, instead he carries it on and the conversation is taken to some warped land of L-O-L's. And I was due for a good session of being silly, I was texting him to make sure he was up and on his way, he was and he was just as excited as me so 12pm couldn't come quick enough.

With the spare time I had on my hands I decided to take a tour of the ward in my chair. It was such a surreal experience, there were so many people in here that I didn't even realise were here because they were so severely immobilised that they were unable to move around independently in a chair, some couldn't speak and so their only means of communication with others is through pen and paper and I had an overwhelming feeling of guilt, I had a reality check. I mean, I was lucky compared to these other patients, at least I could talk and at least I could feel a hug and at least I had my memory of who my loved ones were. I couldn't imagine how lost I'd feel if I had to go through that because I was struggling trying to rediscover my body, but my life on top of that. I really admired the drive in those patients and their families that whenever I was feeling sorry for myself I reminded myself of how happy and jovial others were, in particular a patient called Andy who would always be humming 'Let Me Entertain You' despite his speech having been affected, and that would make me smile seeing that he was being so happy and positive about stuff influenced me to be more positive and see the bigger picture, because sometimes you can get so lost in yourself that you lose touch with others and I think I had the tendency to think it was only me 'suffering' like this when it reality I could've been much worse.

Gav came and I noticed the manual wheelchair in my room had been taken out, the nurses had set it up and gav helped transfer me in it. I was a little anxious about going out in the wheelchair because all I'd focused on was the excitement of being out in my hometown, I hadn't for one second thought about how I would feel being faced in public in the chair. And suddenly all my excitement had turned to panic, and I didn't quite know how to deal with my emotions. It was too late though because Gav was already pushing me out the door. This felt weird, I mean usually when we're out Gav's telling me to slow down and now I was being facilitated by him in this chair. He tried to make me laugh and made light of the situation by joking I was heavy, but I was too distracted by watching everyone else in the street to see if they were watching me or not. There were a few stares but not the hoards of pointing and laughter that I had imagined up in  my head.

So, we headed to the fair but encountered some problems, with the weather being bad previously the grass was all wet and slippy and muddy which meant accessing the fair close up was going to be tricky, I didn't really want to be left alone while Gav went in to get candy floss for me due to fear of being eaten by a dog (It could happen) and then I wasn't going to be able to go on the rides anyway, another thing I didn't really consider when making my plans but who cares, I got to go to the fair so that was a win. Rather than just admit defeat and head back to the hospital I managed to persuade Gav to take me to Asda which was literally across the road from the fair. He wasn't happy about it but we went anyway. We were going to have some food at the cafe but there wasn't anything I fancied so I suggested we go on to town, again that was virtually another five minutes away so we were only ten minutes away and it wasn't like I was going mount boarding or anything. I just wanted to keep going because I was having fun.

We got to the shopping centre and went round a few places and bumped into people who asked what happened, and after those awkward encounters we went straight to ditsch. I went for my usual Margherita with Jalapeno peppers, but eating it was a bit tricky so in the middle of town gav had to help feed me. Bit of a low blow, but I think it was good for me to get over my inhibitions about the whole thing because I wasn't making no miracle overnight recovery and Gav didn't have a problem with feeding me so just shut up and eat the pizza, it tastes bloody good. I guess that's what a month of hospital food does for you.

Time was getting on though and it was just after 3:30pm, I should've been back at NRU by 3. Gav was panicked and so we headed straight back. Naturally the nurse was a complete prick and I was just so absolutely annoyed that such a good day had been ruined by a cock of a nurse who thinks that she has a bit of power so has let it get to her head. She mentioned that it was irresponsible that I'd gone to town and that she'd be telling the Doctor on Monday, 'tell him' I said in an incredibly childish matter. I called my mum and asked that she come and take me from the hospital but she explained that it didn't work like that. And so, I was left a stroppy sandy after such a good day with Gav and the witch of a nurse was no.1 on my dislike list.

Stupid, stupid effin arm

Now that my movement was going from strength to strength, there was still one thing that hadn't shown many signs of improvements throughout my rehabilitation, and that was my arm. I was getting nothing back from it unless it was through the help of stimulators, and it's not like I could carry those around with me 24/7 because it just didn't work like that. I couldn't understand why my arm wasn't responding to me. I tried all the exercises, I was constantly massaging it, even my Mum was at it on her visits and Kiran and Gav.

It's funny because when this all began, all I kept saying was as long as I'll be able to walk and that I didn't care if nothing else returned. Well, I was a big fat liar, because I had my movement back but somehow that wasn't enough, I wanted to restore my body back to before this happened. I was determined that if it was possible for the feeling and movement in my leg to return it had to be possible for the same in my arm. The ever repetitive 'take each day as it comes' from doctors, nurses, everyone was ringing in my ear so hard that I just had to trust that I was doing the right thing and that I shouldn't give up. I shared my concerns with my OT Alex, and she gave me so many helpful hints and tips. She informed me that just trying to get the arm to move wasn't enough, I had to incorporate my left arm and hand back into my daily routing, like trying to rest the toothbrush in my left hand whilst putting on toothpaste, instead of battling with keeping it balance on my lap. She also told me to place things in my hand a lot more, so when I was applying moisturiser, I was holding the tub/bottle in my hand. After a few days of identifying my arm and hand in my normal routine, I started to see flickers in my wrist and started to feel more but was still sensitive to hot and cold.

I think calling my arm/hand 'the arm/hand' wasn't helping because psychologically I was detaching myself from 'it' and for anything to return in my arm/hand I had to acknowledge that this was a deformation in my body and only then was I able to move forward from there. My boyfriend had been doing his research and was constantly telling me off for calling my arm, 'it', 'fucking stupid arm', 'crap arm' and the list continues. He'd been to see his phd supervisor who had taught him some feldenkrais exercises, so now on his visits he was conducting these exercises on me. It was an odd feeling to begin with but a few exercises in and I was starting to get the urge to resist the maipulation of my arm. Now physically, it wasn't happening but mentally it was and that tapping into my neurological helped trigger the return (slow train style) of my wonderful arm.

Ward Round Bouef!

So, ward round today and to my dismay I wasn't being allowed to have an overnight stay at all. Naturally, I had my usual Sandy-sized tantrum and gave Dr Aung the puppy dog's with plenty of these > :(((((((( ... and reluctantly he gave in and compromised by allowing me to have a day out to the park, but that it was only for 2-3 hours. Still. though, it was all I had so I grabbed the opportunity with both hands. I got my rubbish cracked phone out and text Gav, he was just as excited as I was. I called my sister too and she was also thrilled as she knew how much I wanted to get out of that place.

Only 3 days until my pass card out of here (well...one day pass card) so I was super pumped. I was ready to give it my everything in my physio and ot sessions (not that I wasn't already). Nothing could knock me down, I felt a sudden burst of recognition of my identity, the prospect of being in familiar settings had brought back memories that I'd blocked out either voluntary or not I don't know. I was just writing lists of everything I wanted to do I was that caught up in the moment, I just had to keep reminding myself that I wasn't going to able to attend a company movement class or go to the cinemas on top of everything else in three hours...UNLESS, I had Bernard's watch, but who was I kidding, so I changed that list to 'things I'm going to do when I get better and out of this hell hole' and devised a new plan for 'things to do on sat', there was a fair on so obviously the big kid in put that at no.1.

The physio's noticed a complete transformation in my attitude through both my body language and my voice, I was upright and super confident, I was smiling more than I ever have done in that place. They soon found a way to combat my sudden bout of cockiness with some tricky tasks. I was in my element, I was taking step after step and I wasn't needing to use the beams either, parts of my steps were jittery and I was losing balance but my physio assured me that I needed to make those mistakes because then I'd know how not to do it. So, I found myself pushing  this infantile body and recognising the mistakes of the dispositions in my body. I learnt that aligning the left side of my hip to match the right side helped get rid of that rock unbalancing, jerky walk going on. Then, the knee; I had a habit of being lazy with it and just dragging it, but I didn't manage to get away with that for long, 'straighten the knee, straighten, straighten' said Jill. It was helping but it was flipping hard work, I was yawning mid walk and they were sensing I was tiring so they sent me off to lunch early to recharge for the afternoon session.

Wednesday 13 February 2013

I finally have two feet again...

Sunday evening, once Sam left I put aside all my anger and aggression to focus on pushing myself harder. So I'm sat there on the bed and there's a chair directly next to me on the right and I've got my right hand firmly gripped on the chair. Just hold tight and push up I thought to myself (if only it were that easy) after a few gamillion tries, I finally stopped being jittery and shakey. The fact that I was starting to feel more stable in my stance got me thinking that if I tried a bit more then maybe I'd be able to stand, I mean what else did I have to do other than stare at the four walls or watch telly? (oh joy!). No luck though, unfortunately it wasn't going to be that easy, and over two hours later I was feeling knackered so I decided it'd be best to call it a night as I'd gotten as far as I was going to be able to.

Usual morning drill commenced the following morning with the nurses, medication and breakfast and my absolute favourite (NOT!!!) bloods. After my bloods, I had 10 minutes left to get ready for physio, I was putting on my trainers then was sat on my bed and had this sudden urge to stand, I went with this impulse and to my surprise I was stood up, alone no assistance, no holding on to anything, just me. I  quickly looked in the mirror to make sure I wasn't hallucinating and partly to see if I looked any different. And the answer to that was that I looked 'odd', my left leg wasn't completely straight, therefore my body wasn't fully aligned. I wasn't at all comfortable with this. Under these circumstances, you'd think I'd be grateful to be able to stand but I was almost gutted - I just needed time to adjust to this new body and work as much as I could with it as opposed to against it.

I got into the physio gym and couldn't wait to tell them, I wanted them to see I was making improvements so that they could request a home visit for me at the meeting on Tuesday because it was my second week in here and I still hadn't been home, so was itching to get the home visit sorted asap! It wasn't going to be easy getting them to put a request in as I first had to prove I could complete necessary tasks and also to confirm whether or not there'd be somewhere to sleep that didn't involve going up stairs because I wasn't able to walk yet let alone walk up stairs. Fingers crossed.

Sunday 10 February 2013

My Best Girls

My first weekend without seeing Gav and I was missing him like crazy, but seeing the in-laws (Not official...yet! ha!) made my Saturday, and then my two best friends Sam and Sara came up on the Sunday, I laughed so much that afternoon - It felt like old times. Those girls are family to me, they have been there throughout everything in my life, my happiest times and the saddest too. No amount of words or gestures will repay all that these two have both done for me and my family. And for those few hours, I sort of forgot that I was in NRU and paralysed on the left, it was like I hadn't had a stroke at all. It felt good to just laugh and be in the company of my best friends. It put things into perspective for me, I mean all the while I'm sitting here feeling sorry for myself, and these two have got enough stuff going on in their own lives but still they're here, it made me see how incredibly lucky I was to have them in my life, because more than anyone they knew me best. I don't know how I'll ever repay them, but I know I've decades ahead of me to try. Anyway, Sara was playing in the wheelchair and quite taken by the golf ball gear stick and me and Sam were just laughing at the rudies she was coming out with. Then, I was crying but not sad sad tears but happy happy tears because they were emphasising how I'd be out of there in no time, Sara was even joking about bringing her car up to my window and them sneaking me out, it was a plan we sounded super serious about doing but we figured the repurcussions would be too happy so chickened out.

Sara went and Sam stayed a bit longer, the horrible senior nurse came in and told me my wheelchair was obstructive in my room as she couldn't get passed and told me she'd be taking it out and putting it in the corridor. 'Why? I need it to get around and go to the toilet', to which she replied 'You'll have to press the buzzer if you need anything'. I felt so absolutely demoralised and humiliated in front of Sam, that t*** of a nurse had no real reason for removing the chair, and the physio's had given it me to become more independent but of course those progressive steps forward had been ruined by that witch. Even Sam agreed that it wasn't necessary for her to do that. I just burst into tears, 'don't worry Sand', Sam said, 'you'll be out soon'. And then visiting hours were over and Sam had to go, and after such a good day in those last 30 mins, it was quickly becoming one of my worst.


That night, the realisation hit that whilst certain things were incredibly tiresome and frustrating, the love and support of people like Sam & Sara etc gave me that extra push and determination that I needed.

The return of the arm, sort of!

My physio team were absolutely incredible. I was going from strength to strength with their positive encouragement, so much so that one week in and we're already looking at proposing a home visit for me. Obviously I'm ecstatic, and the physio's are soon becoming my BFF's (only joking, Sara & Sam will always be my BFF's *big grin*). All this positive actioning was seeming to good to be true at one point and sure enough it was, the big old horrible doctor's were putting the dampener on my plan as they thought it was all too much too soon. I was not happy with this, I went from cloud 9 to big grey rainy cloud over my head with a touch of lightening.

What a load of dicks, I thought (sorry!!!). How can they just suddenly think they know better than the physios, I mean the physios are the ones that have been seeing me day in day out and listening to my needs so I vented and I vented and I vented to my physios - they just tried to ease the situation, they knew how best to get me out of my sad upset state, with some competitive games with the other patients. This was so much fun, more so because of all the smiles on the other patient's faces. They, like me loved feeling like normal, having a laugh and doing something fun, it was great that they were so relaxed.  And then, in the afternoon physio session, they've put these stimulators on my arm attached at the wrist, middle finger, upper arm, shoulder, upper back on the left and then at times on my neck. Then they pushed the on switch from their controls and boom, my hand lifted up, my arm was raising and my wrist was a little bit stable, and the more I was thinking about moving my finger/hand/arm, the better it was responding. It's like magic I thought, it wasn't though just clever linking between the vibrations, the nerves and the ole brain. Naturally I posted the pic online because  I was overjoyed at the dramatic improvement in this (up until now) stupid rubbish non-working arm.

Sunday 27 January 2013

My Electric Wheelchair


Me and my new wheels :(

My physio Linda took me to have my first 'spin' in the chair, and at first it was fine, I was so relieved that I could move around by myself and not having to ask someone to wheel me or take me somewhere, then for a moment it sunk in that this could be life forever now, in a wheelchair. This horrified me to the core and then just like that I uncontrollably broke down, Linda tried to calm me down, she hugged me and told me that as horrible as it had made me feel there were so many positives to having this year and she said that there was every chance that I'd be walking out of this hospital but that until then I'd just have to rely on this. 'It'll be cool' she said cheekily. She made me see that although it felt like the worst case scenario from here, everything from here on out would be positive and much better.

I took her word for it, because surely if anyone's going to know, it was going to be her. She gave me a few minutes to compose myself then we headed back to the gym where she set me up an assault course to test my reactions on the chair out on. One of the great things about the physio team here is that they tried to make the process as fun as possible. They would regularly set little tasks and challenge all the patients to a mini competition. This was great and was the one time where I revelled in engaging with others on the ward because I was able to empathise with that feeling of having felt like we'd achieved something and even though it was individual goals, it still felt like team work and I loved that community feeling  that was there - it wasn't forced or contrived. It was naturally and a basic human function wanting to help others achieve their goals, whether that be through giving them encouragement in their exercises or sitting and doing exercises together.

Physio, West Park Style

My first Monday at West Park and boy was I in for some hardwork. Outside my room was a board with a timetable detailing when everyone (other patients on the ward) were going to be doing their physio, or their OT (occupational therapy) sessions, or speech etc. And there was my name listed: Sandy for an AM & PM physio session. I was part relieved and part exhausted, on one hand I knew that this was going to be good for rehabilitating my body and then on the other I knew how much focus, strength, energy and determination this was going to need to take, but it was a challenge I heartily and readily revelled in taking on.

When I got there, it was a lot slower than I'd imagined, it was more about them identifying my specific physio needs. They had to assess how well the movement in my leg was and I was fast learning that my initial thought that I was on the fast track to being able to walk again was a long way away yet. Proven further, when they attempted to get my taking steps with assistance from them. My leg was more than unresponsive, I was so sure that I'd be able to walk on my own but that was mostly down to me still being indenial.

Anyway, we worked some more on getting some responses back from the arm, but sweet fa. I honestly had given up hope on regaining any mobility in the arm and had decided not to warrant the arm any time to fix because I felt like I'd been trying for so long and now felt it was pointless. After a swift (but very much needed) talk from the physios, I soon realised my attitude needed to change and that I would need to balance out and provide as much time to my arm as I was giving to my leg. I was told that just massaging/rubbing it would help to regain feeling and then trigger off some movement. I decided it was worth a shot and it gave me something else to focus on trying to improve instead of wallowing in this pathetic state of negativity.

Those two hours soon went by and now it was lunch time, 'see you after lunch' they said with a big grin. I went in expecting a sort of miracle session with me walking by the end of it but instead I was dealt with a massive reality check and whilst it was definitely something I did not want to hear, I needed to be told so that my expectations were more achievable and that I'd be less disgruntled if I couldn't walk after ONLY 2 hours physio. So, in that sense I was starting to get more patient with the whole process. The only thing irking me now was the amount of hair loss I had, every morning I'd wake up and my bed/pillow would be covered in my hair, I'd be walking and my hair would just fall out and not just falling out strand by strand, sometimes there'd be clumps of hair falling out. My hair had gotten so thin that once again, I felt like something was being taken out of my control, I mean it was bad enough that I couldn't wash it or style it but, now I was not being left with a lot. These side effects of the Warfarin really wore me down at times. My eyes would be so blood shot, my skin blotchy, it was really taking over my life. And if those side effects weren't bad enough, the blood tests every day to determine my daily dose were the icing on the cake. Trying to remember if I was on a 4 or 5 or even 3mg dose each day was so testing at times.

Back to my afternoon physio, I walked in and Jenny & Linda were stood there smiling as the nurse wheeled me in. 'We've got a surprise for you that we think is going to make you happier', and right beside them was an electric wheelchair. I tried to feign an interest in it as they seemed incredibly happy at being able to help me get around more. I was completely distraught and broken inside, 'is this what my life has become now' I thought  to myself. If I thought my identity was being taken away before, this was the real test, I felt completely dehumanised.

Friday 25 January 2013

I hate NRUUUUU!

Met a lovely nurse called doreen on the evening shift for my first night, and she set all worries and distresses with ease. She had this really soothing voice and nice 'ora' so I felt good. She ran through all the normal procedures, instructed me I should perhaps go to the toilet right before I attempt to sleep just incase I need to go in the night because obviously now I am unable to get up and go myself and there's always the chance they may not get there in time to take me. So, off I went as she carefully transferred me from the bed to the wheelchair and to the toilet. Brakes on the wheelchair and then again transfer off from chair on to toilet, she gave me the cord I needed to pull to let her know I'd finished so that she could come in and get me off it, and back to my room. I found this whole process so difficult to deal with, all these nurses (male & female) helping me to take down my underwear as I couldn't manage, it felt incredibly embarassing, I mean the only other person besides me to take down my underwear is usually my boyfriend, but granted those circumstances are more playful (TMI I know!) so, instead of being upset over the fact I couldn't take down my underwear alone, I just had to get used to the fact that they were. I would blush like mad when any of them would comment on certain pants, not sure why but I turned into a 14 year old girl in those moments.

Then, morning and boy oh boy did I have the worst night's sleep. I was so disorientated - I mean, I'd only just got used to feeling alright at New Cross, but this move rocked me a bit and irritatingly my sleep. (I'm the grumpiest girl in the world if I don't get my 8 hours). I woke up to Nurse Lei and Sandy, an absolute comedy duo of nurses. They were full of life and one of those people that could make a conversation with anyone. Nurse Lei asked about my profession and upon hearing I taught Drama, she joked that I would have to teach them and that her best friend was a Drama Teacher - Turned out to be my teacher from school Mrs F. (within the next few days, Mrs Fearnehough turned up with chocolate and cards ^_^). Then they told me I would need to think about whether I wanted a bath or shower. I asked if my mum and sister could do it but they said no and that they'd need to do it. So, I refused to have a bath, it may sound incredibly stubborn but I was so sick of having random people wash me and not wash me 'properly', I needed someone who I'd feel comfortable with, and after refusing them washing me for a second time, they gave in and contacted my mum to come in to bath me.

I was so relieved. One, because I was finally going to have a bath (I'd been having bed baths and sit down showers for 2 weeks up until now) and secondly because I was going to have my mum do it. Mum gets here and then her and Nurse Sandy wheel me into the bathroom, where they pull out this machine with a hoist. I wonder what that's for I wondered, then as they started to assemble the hoist, the sad truth was sinking in, I wasn't going to simply just have a bath, far from it, there was going to be this agonising preset before scene bath was to follow. So mum undressed me, then with assistance from the nurse they both picked me up and placed me up on this machine which was quite a height from the floor. As I'm sat on this seat thingy, my body is just so slumped from the left, there's a mirror straight ahead of me and I'm horrified at what I see staring back at me. Never have I ever felt so repulsed to see myself. I just turned away and looked down at mum who was now operating the hoist (and she's a little bit of a technological virgin) but, she was working this like a treat. She strapped a cover over my arms to keep me secured and then manoeuvred across the bath and then lowered me into the bath until I was now sitting in the bath. Bar all the negativity of the process it was absolutely fricking worth it. I was actually having a bath. 'Never thought this would happen mum' I said, 'I know' she said. She joked that it was like when I was little only with bigger boobies, the child in me chuckled away at that for a bit.

I finally felt clean for the first time in ages. Mum had brought my shampoo and showergel and creams up and I finally smelt like Sandy again. She brought up some clothes too and I was more than impressed with her fashion choices :)

And then the Dr rocked up (She was an absolute numpty imo) telling me I needed to interact more with the others on the ward because I was being anti-social but, in all fairness I didn't know what exactly I could talk to them about. At their youngest they were 40 and personality wise, they were nothing like me. I'd made attempts but being in that environment was making me feel worse, I was feeling far more proactive in my room, as I was able to talk to my friends and practice trying to get my leg working more, and doing those things made me feel like I was doing the things I normally would if I would home. I felt the Dr had contradicted everything she had first said about the point of being in NRU, which was to adapt back into my 'normal' community/environment and instead they were trying to make me doing exactly what others on the ward were doing and that they felt I'd be sinking into a state of depression if I didn't interact with others, but they were missing the point. It was more depressing being in an environment with people suffering similar or completely different neuro-related problems that were twice my age. I dug my heels in though (much to their dismay I'm sure) I might have lost my mobility but I was going to be damned if they thought they were going to take the little bits of my identity that I felt I held onto. Fuck you trying to make me like every other person I thought, especially after they tell you they design an individual care plan to cater to the specific and unique needs of the one because every case was different which a one for all system would clearly fail at.

Wednesday 23 January 2013

Welcome to NRU (Neuro-Rehabilitation Unit)

In all honesty it isn't the most inviting of wards, I was taken to my room and told to wait. My sister wasn't allowed in with me when they transferred me over so she had to make her way home and then head to West Park because visits weren't allowed until 6. So, I'm sitting in this room and feeling totally underwhelmed. I'd psyched myself up so much about this ward in my head from what the doctors and nurses told me it was going to be like, 'you'll get your own room', 'you'll be with much younger peope your age'. Bollocks was I, the youngest person was forty odd, practically double my age. I felt even more alienated then ever before.

In walks the doctor who tells me I will be there for a minimum of 6 weeks and then I'll be reviewed and dealt with accordingly at the time. Then after running through all the rules and procedures, 'Do you have any questions?', Me: Will I be able discharged earlier?... She informed me that it was unlikely, I was so dejected by this point that I'd fallen into a complete negative state. After hearing that going to West Park was a sign that I'd be getting better and ready to head home, it'd all be shot down and I suddenly felt like I'd taken a million steps back instead of the one or two forward I'd hoped to be making by being transferred to West Park.

Gav was working on Operas at this point so was rarely seeing or speaking to him, this made me mood even more distressed because he's not only my partner. He's my go to guy, he's the one I vent to when someone doesn't say thank you after I've them way or Topshop don't have those Leigh Jeans I wanted in my size. I felt like I'd lost my right hand man, ironic right. So, I was on the phone to my best friend Sam. She told me not to focus on the time thing and to pay more attention to getting better and listening to physios. I knew she was right but I needed to just have a strop for a bit and she was great for that because she'd let me have it but then focus on all the good points and continously reminded of where I was when this all began. That gave me the kick up the back side I needed and mummy and Kiran were here so I was pulling loads of these on my chops -----> :))))))))

Moving Day

I'm moving to West Park today, no biggie or anything. OMFGGGGGGGGGGGG I screamed with excitement to my mum and my sister down the phone - I'd been waiting so long (well just a day short of two weeks) that it felt like this day was never going to come, this was another major step forward on to my route home and more importantly my recovery :)

'I'm on my way now' said my sister. The thing I looked forward to most on my lunch times was seeing my little sister, three years my junior but boy oh boy has she grown up and matured into a beautiful humble person. She isn't usually one for soppyness but there were visits where we would just sit and talk and I'd tell her about my improvements in physio sessions and just my own mood and she would be in tears. 'Stop crying Kiwi' I said, her name's Kiran but me and mum call her Kiwi, (she eats them so often and we never thought her a kiki hehe!) *shaky voice* 'I'm not' as she wiped away the tears. Thing is, I felt guilty because she had to grow up fast in like a few hours, she went from being the baby of the family to my absolute knight in shining armour. She would come every day, wheel me to bathroom, wash me, clothe me. Then pick me up and put me on the commode. This was a complete role reversal in the dynamics of our relationship, naturally being the older one I was always the one looking out for her and offering her advice and support. This was something that was going to take some time to adjust to in the beginning. I'd get mad because she'd be doing something wrong and I know how I'd do it but thats irrelevant now because I can't and so I've just got to let her try and do it, she was bound to figure out eventually and she did.

And the great thing about having Kiran around was that she was always always always guaranteed to make me laugh. Although, I wasn't impressed when she refused to get me any more sweets until I started eating hospital food - turned out to be a rouse in the end as she was winding me up. She was aware of how much I didn't like the food there, mostly because I was putting my food orders in with either her and mum at home or gav!

Definitely gone off in a sister appreciation tangent there but I don't care, she's an incredible young woman and I'm exceptionally proud of her :) ...anywaaaaaay, we're packing all my stuff ready to get me transferred. We're sat waiting and waiting and waiting until 4 hours later the ambulance transport has arrived...on the way to West Park ay it!!!!!

The Exceptionally Good and The Not So Good!!!

Physio went well again today, this time focusing some more on getting some movement out of the hand and although their wasn't any voluntary movement there, the flickers were certainly visible. A great sign indeed :) Although, I was incredibly tired today and physio's were noticing my concentration was lapsing throughout, so decided it was best the cut the session short to allow me to recoup for the next session. Got to say I was a little bit relieved because I was feeling unbelievably exhausted, my hair was falling out lots too (Stupid Warfarin side-effects).

Got back from my physio though, to find that the two student nurses; Danielle and Stephanie had cleaned my bed area and tidied up all my magazines, put my fruit in a bowl, neatly put out all my cards, fixed my balloons, made my sweets more reachable for me :)

I was so touched by this selfless act, they had gone out of their way to do something nice for me when they could've just had their breaks, I was completely shell-shocked and equally thankful that they valued me as a patient. I feel that the student nurses in particular (Danielle, Laura & Stephanie) were far more understanding as health care professionals (in training obvs) they added that personal touch that so few can manage to do naturally. They were frank with me and understood my frustrations of my age and being on that ward but they would always manage to encourage me to focus on the positives, whether that be the improvements I was making in physio or my amazing boyfriend, mum, sister and friends, or about looking forward to what things I wanted to do when I was able to do so. They all managed to have this ability to get me out of a miserable mood and were always willing to spare time if I ever wanted to just talk. I found it remarkable how excellent their nursing care was, especially given the fact they were 1st year undergrads (I've taught first year undergrads and they can be rather immature) and their ages (all 2 years younger than me).

They were an incredible and valued part of the team, much better than a few of the other staff. One incident, I had been wheeled to the toilet by two healthcare asst/nurses, they then seated me on an unclean toilet seat. I then was left, and so in an attempt to try and balance myself to be able to reach the sink to clean the toilet before using it, I fell to the ground. I'd been left in there for around 10 minutes, I had bashed the door with a broom in there, I pleaded for help but was left there all alone. And after finally feeling postive about my recovery, I was left feeling demoralised and worthless, all because these two members of staff deemed it acceptable to seat me on this digusting toilet. I was so fucking angry, one that I couldn't get up and sort this whole fiasco out myself and secondly because I could hear those two feckless incompetent morons chatting away as if they hadn't a care in the world. Then when they finally did come in to get me, they told me I should've asked them to clean it instead of trying to do it myself when it was clear I couldn't. Suffice to say a few choice words were constructed, 'Well, I didn't think you'd need telling since you had eyes and were aware of the state of it'. However, I won't let the moronic behaviour of few cast a bad shadow on the others that were absolutely phenomenal on the Stroke Ward at New Cross. Special and hearty thanks for looking after me to the following (Bound to forget someone :/)

Student Nurses
Nurses Tracey, Indra, Charlotte, Emma, Samantha, Rebecca, Loveness & Ram
Physios Laura, Michaela, Sarah, Lucas, Denise
Dr Liz, Dr Fotherby (Can't remember the name of another great doctor, but she was great too)

x

Miracle on the Stroke Ward at New Cross???

So, I'm lay in bed (Pretty much the highlight of my first two weeks in hospital) and I suddenly get this pins and needly sensation in my toes, and I'm trying to move them and to me it felt like it but I look down and I can't see any signs of movement. I keep trying and trying to engage that thought process that is identifying with and making an attempt at connecting the physical and after umpteenth attempts, I finally saw a flicker at the base of my toes of where the muscle was trying to do something. It felt like a complete breakthrough, because for days on end I was trying to hope that I could touch the bottom of my bed and after so many failed attempts before, I remained defeated in ever keeping that faith that it would ever be achievable.

So naturally, I was straight on twitter (Well, I say straight after. Of course what I meant was after I buzzed, and asked the lovely nurse Sam if she wouldn't mind passing my phone off the charger). I was so encouraged from all the supportive messages from my friends. I was starting to feel like less a damaged coppelia doll and more like a 'normal' (whatever that is!!!) person again. After having the luxury of being in control of my body for 23 years, and the comedown of having the basic rations of half a working body, I was instantly boosted at the prospect of touching my toes, because before that I had nothing whereas now 'I can feel my toes', I was on the next step of however many it was going to take before I could get to 'I'm walking'. I had no real indication of when that was going to be but now I had hope that something else could be possible. And with every day something else would improve, 'I'll be happy if I can just feel my leg and that's all', 'If only my mobility in my legs return thats fine'.

This was a sign of good things to come, and what I was fast becoming to realise an absolutely relentless journey on the way...

Sunday 20 January 2013

'Pleb-otomist'

Another morning and still I find myself waking up to chaos, only this time a phlebotomist (which I pronounced 'pleb-otomist' - If anything, at least I knew how to say that word properly now) and she was after 'some' blood, although her definition of some and mine were totally opposites. I was expecting 1 or 2, maybe 3 vials max needing filling.

ERROR, by about the 10th one, I just sobbed my heart out - I was extremely comfortable and hate needles at the best of times which didn't help I'm sure. She was clearly frustrated with me by this point. 'There's just another 3 to go, just please keep your arm still', this frustrated me a bit because she was asking me to hold my flaccid arm straight, the exact arm that had no mobility in it which was incredibly awkward to do so with my other right hand bearing in mind the angle I was expected to do it. What a numpty, I told myself (she is probably really nice, but in that moment she was the big bad wolf to me) . Staff nurse Tracey came to my rescue though and seeing me in distress told the phlebotomist to come back another time because she'd taken a lot already.

After that mini episode, I had the biggest pain in my head - thankfully I was given some painkillers and the pain soon eased, definitely helped that I was able to doze off too. However, I woke from my sleep to find a nurse and a doctor at my bed side with injections in tow. 'Why do you need that?' I asked. They informed me they'd come to get the bloods that the phlebotomist couldn't get and that they also needed a blood sample for my INR, so with a dejected sigh I just let them do what they needed to do. The head nurse on the ward Tracey was a fantastic support unit for me in there, she held my arm in place and was wiping the tears from face and providing me with some of her witty humour that it managed to distract me from the prodding and pricking that was going on. Once that was over, she passed my phone off the charge point and gave me a sweet and said in a jesterly manner 'now stop causing trouble you, it's dinner time', she managed to get a blushing smile out of me, knowing I was the biggest fuss pot when it came to food. ha!

Gav came to visit :))) but, it was also physio time. 'She needs to do physio, so please let her go' sensing that I was already a bit of a grumpy girl and that physio would put me in a better mood and he wasn't wrong. This physio session, we focussed on improving my balance for me to be able to sit independently. By the end of that session, I was able to sit up independently with little assistance. I was so ecstatic, finally I was able to do a normal thing and sit instead of being lay down in bed like I had been for the past 8 days or so. Gav must've been off the ward at this point, so when I got back they helped me into my armchair beside my bed and propped me up with pillows to support my left side. Gav walked in to see me sat up, with a block underneath my feet and pillows to support my slouching left side, but I didn't care, I was elated and to see Gav's delight was just the best response I could ever ask for. 'Babe, I'm impressed, check you out in your chair. You're doing really well, I'm so proud of you.' Quite possibly one of the best days I had :)

Food Glorius Food :|

Dinnertime :( and today's menu was cauliflower & cheese - I effing hate cauliflower & cheese (I know, what a fussy girl) so I justed opted for dessert (Jelly and Ice-Cream - Mega WIN). I was soon on the phone to my little sister Kiran to ask if she could bring a cheese sandwich for me and some more sweets. Shock to her, because for so many days I was unable to keep anything down. My best friend Sam and her sister brought me like a crate of lucozade (I'm usually a massive lucozade fan) but for some reason it was no agreeing with me. I had a sip and instantaneously a whole episode of projectile vomit ensued. The same thing happened when I had starburst and even when I tried to eat dry bread. My body was not responding in it's usually way and now I was beginning to worry, I couldn't eat or drink anything. And so for the next few days I was on a drip, this was an odd experience because I wasn't getting that hunger urge that I would normally get. I found it fascinating how that drip could provide a quick fix to my dehydration and malnurishment.

Frustratingly, the hospital staff took my sweets away from me because they felt the sweets were preventing me from trying the food. Oh, how wrong they were. But, I wasn't too fussed about the food, it was hospital after all, not like I was expecting gourmet or anything so it was fine. Thankfully though once I was off the drip and eat 'proper' food (whatever that is!) everyone was bringing me food. I think Kiran and Gav had become quite the regulars at the on-site Greggs, because that's where the bulk of my lunches and dinners were coming from except for when my fantastic mum was making food and sending it in for me and her best friend Lincoln and his wife Dips. Dips works at the hospital and used to visit me regularly on her lunches. I was always reminded of the incredible support I had, and through the toughest days that knowledge used to get me through :)

Grumpy girl!

I wasn't having the best of days today, I was feeling incredibly drained and just generally fed up. I just felt pathetic, I mean I couldn't even go to the toilet when I needed to and had to push a button to come and get someone to assist. I couldn't just brush my teeth when I wanted because how could I hold the toothbrush and apply the toothpaste to it accordingly. I couldn't just sit up, because I needed to be facilitated into a chair by others, and needed support mechanisms to keep me upright, otherwise I just slump down. My speech was still a bit mumbled, I wasn't able to smile properly, just a half smile. I couldn't even roll over for goodness sake. What's the frigging point, I found myself getting this frustrated quite regularly, especially when I would see the nurses and doctors that were within my age bracket, and they were walking round so freely. Why couldn't I just get up and do that. My frustration would then transfer to anger, anger that my body had failed me because in my brain, I knew where my arm and leg needed to be but getting that to connect from the theory to the practical was proving to be much more difficult than I had ever anticipated.

The only way I was ever able to get out of these grumps is when my visitors would come and even then it wasn't an automatic reaction. I remember my friend Nicole from uni coming to visit me and she bought me a notebook and pen. 'Write down whatever you're feeling or anything', this is one of the first things that got me to think about writing about my experience. She told me I could do a physical theatre piece on it one day (knowing its where my teaching/performing passions lay) that gave me a focus and a drive to turn what felt like the worst thing ever into a positive thing. Richard/Stagedoorjohnny came with like 20 magazines, 'If you're bored, read or just look at the pictures. I didn't know which magazine you read, so I decided to get all of them.' and he did, from heat to glamour to reveal, all the gossip mags, you know the important ones ha. He also reflected on the fact that one day this could be put into a performance of some kind.

I remember one visit though, from another friend from Uni, Michaela. She came with like a hamper of treats for me which cheered me up massively; grapes(lots of them), chocolate(malteasers), books to read, another notebook, but that happiness was soon turned into sadness as it was time for me to have a wash, and I was transferred onto a chair by my sister and two of the student nurses, then had to be wheeled and seeing my friend see me being wheeled off  like that made me feel an overwhelming feeling of humiliation. Suddenly I was having to really acknowledge the fact that I was wheelchair bound. I mean it was okay for my mum, sister and boyfriend to see me like this but my friend's? that was different, I suddenly felt weak and incredibly useless that my friend had to witness 3 people having to take me to have a wash as I was unable to do it for myself, I think it was more to do with acceptance on my part rather than anything. Michaela thought I was incredibly strong but, I couldn't see that then. But, her invite she had for me and gav to attend her wedding soon lifted me up, because it was the first sign that showed eventually I would be out of hospital and well enough to attend the wedding.

Leyna (my friend from school and uni) was an incredible unit of support, her father had had a serious stroke only 5 months prior to me, so not only did she have to deal with that but she now had to deal with me. 'It's going to be fine dude' she said as we both tried so desperately hard to hold the tears back, but who were we kidding and cue waterworks. Having Leyna around though was great, she was a real inspiration to me because seeing her go through what she had with her dad and her ability to still go around with such a positive attitude gave me the push I needed sometimes and wheneevr I thought I was having a tough day, I was reminded of all the tough times she had and how much better things were for her Dad as time went on and that you have to go through some tough times to get some good ones.

And there are so many more, which I will finish telling you about at some point!

Friday 18 January 2013

Can I go yet???

Mid way through week 2 at the hospital and my daily routine of asking the staff; can I go yet? is met with a disappointing ‘not yet I’m afraid, we’re still waiting for a bed to come up at the neuro-rehabilitation hospital’. Then finally on the Wednesday, a consultant from the rehab hospital comes to my ward to visit so he can carry out an assessment and informs me that I will be moving over there soon. ‘You’ll get your own room and your own electric wheelchair’ he told me with a reassuring smile. In all honesty, I was rather disheartened, being told I’d be in a wheelchair at that moment felt like I was taking huge steps back, but still the change of scenary and my own room was just what I needed as I had been struggling to get a good night’s sleep for the past 2 weeks because the ward was constantly busy. A move to the rehab hospital was one step closer to me getting better, therefore a step even closer to going home :)

My first (assisted) steps...

So, after being upgraded to the Sam Hall Turner for transfers I was asked by my physio how’d I’d feel about trying to walk. I didn’t hesitate in giving my answer ‘YES PLEASE’ I said joyfully. This was about to be the best day ever for me. So, with one physio supporting my ribs, another facilitating my left leg, one holding my hips in place, another keeping my shoulder and arm upright and the other supporting my back, with all 5 of them and me I was walking. I mean yeah, in the grand scheme of things it probably wasn’t that major, but for me at the time it was that glimmer of hope I needed to get me through, because I was very aware of the challenges I was going to have to face to lose those 5 bodies of support to eventually be able to do i t myself. BUTTTT, at least it was achievable and a lot more sooner than the suspect 12 weeks before I could walk prediction from docs. All the student nurses and nurses on the ward rushed down the corridor to see me. ‘Go on Sand, keep going’ they said, and I had the biggest smile on my face, it was unreal :) Naturally, the first thing I did was tweet this, but to finally be able to say I took some steps was so surreal!

Sam Hall Turner (Image)

7 days later...

So, in the past seven days, I’ve had to deal with the following:

- Being unable to walk: Doctor’s said it’d be at least 3-6 months before I could stand/walk again
- Being unable to feel anything on my left side
- Needing someone to bathe me
- Needing someone to dress me
- Needing at least 2 people to take me to the toilet
- Relying on a wheelchair for mobility
- Not being able to do my hair
- Not being able to sit

and the list goes on. Talk about a lot of no’s/cant’s.

So after missing two physio sessions because I was just too tired, I was finally given a big push to go to my first physio session with strong encourage from the student nurses. They really seemed to understand the frustration I was going through but, they also reminded me that I wouldn’t be able to get on the mend if I kept being stubborn and even offered to come in with me for support. This finally got me up, and so my rehabilitation started.

They had me doing so many exercises, focussing on my core to begin with. Using those muscles to regain some movement in my leg and to trigger the nerves. Surprisingly with sheer concentration this was working, it might not have been a huge movement but my leg was actually moving independently. I didn’t want to get too ahead of myself but I was feeling incredibly positive about this, which was the first time since this whole thing began.
Then on Monday, physio’s were so impressed with the progress I had made - I was now being transferred via Sam Hall Turner :)

P.S. All my visitors that have been, have been amazing and I was gutted when my close friend Sara’s attempt to sneak me in some peanut brittle was thwarted by Gav - Nothing gets past him. Mini grrr!

The morning after...

'Good morning Sandy flower, it’s tracey here, I’ve come to give you your morning meds…’ It’s almost as though I’d forgotten what had happened to me. ‘When can I go home, I wanna go home now’, so she explained to me what had happened and by then, I was too dosed up to remember what was going on, so was in and out of sleep for the next 2 hours. Then, I get up with the sudden urge to go to the toilet. I was feeling great and I was so adamant that I could and would be able to make it by myself.

So, I managed to swivel myself to the right and use the strength of my right side to propel me up, but I have to try this a fair few times as I’m struggling to keep balanced and keep falling down on my left side. After many attempts I somehow manage to find the strength to go to stand up on my right leg off the bed and then immediately realising I’m needing to step on my left leg to get upright but it just doesn’t happen, and I literally crash wallop and bang to the floor so hard, all my drips and wires attached have come loose, and I’m trying to get up but my body just isn’t responding. This in turn gets me so angry, but then so sad and just a whole range of emotions all in one. It suddenly beckoned on me that this was not going to be easy and that it was a long haul kind of journey I was about to embark on. And in that moment of defeatism, I just brokedown in tears. I didn’t feel like Sandy, I felt like my identity had been taken away from me because my independence was what I was most proud of about myself.

The elderly lady in the bed opposite jumped out of her chair and basically grassed me up to the nurses although, I was hardly conspicious - I was slumped, face down on the floor, with the machines I was attached to bleeping off because I’d become detached during my fall. So, once the nurses etc ran in and picked me up, I got the biggest bollocking ever. I gave them the silent treatment, they asked if I would do it again, to which I replied yes.

And in that time they must’ve contacted my next of kin as when I next woke up my boyfriend was sat there at my bedside with his book and his notebook. I asked why he was here and he told me the hospital called and asked if he could sit with me to keep an eye on me as I was getting a bit too big for my boots. And yup, you guessed it, he gave me a bollocking too. I wasn’t too fussed about that though as I was just pleased to see him, and instead remained on my best behaviour.

So, my afternoon got off to a great start, and then it was visiting hours, I wasn’t expecting to see anyone other than my sister and mum. Instead, I was overwhelmed at all who came to visit; my mum’s closest friend, friends from school, Richy P. And then the biggest surprise of all my friend Sam (who lives in the capital) was here, I was so happy to see her but equally frustrated that people’s schedules had been interrupted and inconvenienced because of me. Then Skelts came, and he didn’t let me off with any abuse, which was a relief because I wanted to feel like my old self and with those people treating me that way, it allowed me to in some way feel connected to the old me. Then by 8, I was all alone again ready for bed, which sucked, especially after such a high of a day.

21/05/2012


So, I’m rushed into resus - by that point I’m unable to lift/stand/hop and all that jazz on my left foot. Again, ‘dont panic sand’ is what I told myself, as there was going to be a perfectly good reason why this happened and the dr would fix me and I’d be on my way in a few hours, or a day MAX. (How foolishly naive of me). And in my head I’m having a go at my leg thinking why the hell are you pretending not to work, that still did nothing and by this point I was completely paralysed from the left side neck down. The numbing of my mouth had become intermittent at this point and my speech wasn’t too clear either, I just put it down to me being a mumbler (my friend’s usually tell me it’s a terrible habit, possibly worse than my handwriting).


And then my mum walks in and all that hold it together, be a power ranger nonsense went out of the window, and I suddenly turned into an 18 month old who needed consoling. She was almost as shocked as me, so she absolutely didn’t reassure my worries, although she did try her utmost hardest - bless her.


In comes the doctor, she was super cool and completely honest in her diagnosis admitting that she didn’t really know what was going on but that I was in the right place and that they’d do their best to find out. As much as this didn’t exactly settle my worried mind, I liked her and felt safe in her care. So, off I go for some tests, some sort of brain scan to begin with, I don’t remember much of what happened here, but I remember being wheeled back into resus whilst doctors awaited the results, and all I see is my mum sitting there with my converse in her hand. ‘these stink’ she said with a cheeky grin on her face - I couldn’t help but feel good that she was still being ‘normal’ with me (whatever that is!)


Meanwhile, Dr Liz returns and says I’m indeed having a stroke, but that she would need to carry out more tests to determine how/why etc. I cried again and even mum was at it this time. ‘it’s going to be alright I told myself’. Then, an elderly dr came in and said the tests came back and showed everything was fine and that I could leave. ‘what the actual FUCK is he talking about’ I thought to myself, so mum gets up to go outside and says we won’t be leaving until an explanation has been given for the paralysis on the left side, at this point a student nurse had to tell the dr off as the consultant had already been in and said I wasn’t to be moved, mum added a sarcastic ‘yeah’ when he said ‘oh right, I do apologise maam’. Incidentally and thankfully that was the last I saw of that moron.


And at some point Gav (the bf) came and I don’t really remember much about that. All I remember now, is being in and out of consciousness and seeing my boyfriend and consultant wheeling me on the bed down to the MRI bit. ‘What’s going on I asked him’ (memory was all over the place at this point) he explained and again went the water works once more. Next, I remember having the MRI and my arm almost being trapped because the moron who set me up on the board thought I could hold my arm up, I cried to him ‘it’s not working’ and was even more scared that he was going to accidentally trap me in there, because he was a feckless numpty.


Once more, things are hazy from here on out, but I remember going into a bay on my own. I’m in and out of consciousness still and I remember a nurse saying ‘Hello Sandy, my name’s Emma and I’ll be looking after you today. We’ve brought you up to the stroke unit because you’ve had a stroke’ and I’m sat there thinking ‘I’m only 23’.

‘Call Sam’ I remember telling my boyfriend, panicked that I didn’t know what was going to happen, I wanted to be able to speak to one of my closest friends on the phone incase I wasn’t able to again (looking back now, I’m thinking how dramatic sand). Of course, I dosed off so my boyfriend did the calls to friends. I was upset that my sister hadn’t got here yet, once she did though, I through a hissy fit, which left us both in tears. She’d never seen me that ‘weak’ before, and I’d never seem that pitying frightened look she gave me before.


And then the big evil dr came in (he wasn’t big, he probably wasn’t evil but he definitely was one of the most incompetent drs id ever had the discomfort of meeting) ‘just need to take some bloods’ he said, ‘it’ll be like a small scratch’ he said. All that was a lie, he jabbed me so many times that it got to the point where I just threw an absolute wobbler, I demanded he ‘fuck off’ and in comes Ram (One of the male sisters) to inject some morphine, which was quite relaxing until everyone left except my mum.


I suddenly felt really weird and disorientated. ‘mum, mum, mum come here’ I said, and all I remember is seeing her hand and suddenly the lights in the room were flicking and everything blacked out. Shortly a after I awoke to find a room full, and I look down and see that I’m soaked. I look up to my mum, she looks like she’s seen a ghost, I turn to Gav and he looks just as worried. ‘why am I wet?’ I asked him. ‘you’ve had a fit and lost control of your bladder sand’. In that moment, I just couldn’t believe what I was hearing. I’d never fitted in my life before ever, does that mean I have epilepsy then, I asked myself. It just felt like after 23 years of never requiring hospital care except for minor fractures/sprains (I was quite the sports fanatic in my youth but also extremely accident prone), But it seemed as though my body was trying it’s best to tick myself off for a million and one problems.


I get moved from the room on my own into a bay with other female patients. And they’re all over 65 at least. Never have I ever felt more out of place or like a minority. It was really difficult for me to adjust to this setting, I just want to get out that’s all I kept telling myself. Later on that day I remember waking up to visits from my friends. I cried every time anyone came that day. One of my friends even joked that I hadnt been on twitter which made me chuckle a bit as I’m quite the twitter whore!