Wednesday, 6 March 2013

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.