Life//Adventures

Recently my mobility has been improving quite increasingly and I’ve been getting more and more confident about being on my feet. Since the stroke I have been using a seat in the shower (too much info?) as I wasnt stable enough to stand up for a prolonged period of time whilst washing my hair etc. I’ve come home for a couple of weeks to see my family and I just decided that I wanted to try standing up in the shower. Somehow I just felt like I could do it and so I just did. I guess its kind of like with my walking, I just have this feeling that its the right time to try going outside without aids or that its time to start using public transport. I’m so happy that I get these feelings that make me not hold myself back now that I dont have anyone to say “you’re ready” 

I’m SO happy I dont need to sit down whilst showering now. I HATED  sitting in the shower, although its handy for shaving legs, imagine sittting on a plank everytime you want a shower, its so uncomfortable and has even previously bruised the back of my legs. Very pleased to see the back of it.

A couple of months ago the two ladies who have been supporting me from the stroke association asked if I would like to talk to a communication group in Cuckfield. The group supports stroke survivors who suffer from communication difficulties like asphasia. Of course I said yes and last wednesday (aug 24th) Feeling confident about walking unaided, I left once again with only my splint & bag, caught the bus to Brighton station and got on my first post-stroke train. Catching a train was much easier than getting on a bus but I will still never understand why people find it appropriate to ask what i’ve done to my leg - OK so most people think it’s broken “oooh that looks painful” “how’d you do that?” but trust me even if thats all it was I can guarantee I would be just of bored of people asking. When some people ask it’s interesting as I find some have experienced something similar themselves but hat I dont understand is I would never dream of asking someone walking with difficulty walking whats wrong with them. For one I’m trying to concentrate on walking and secondly it’s boring when it happens every time you leave the house and I can’t even explain how awkward it is when I say whats happened with the majority replying “but you’re too young’ well uh, clearly i’m not!! so anyway rant over (mostly) On the train a lady sat next to me asked what I had done to my leg when I respond with ‘I had a stroke’ she then sat STARING at my face like i was some kind of die-ing puppy. I’m sorry I didnt realise this was an invitation for wierdo’s to creep on me. 

So I arrived at Haywards Heath station where I walked to meet Anne, I was once again asked what had happened to my leg, laughing it off I was excited for Anne to see me for the first time since April. She drove us to the meeting where I was introduced to the members of the group. They were all so lovely and seemed as determined as I am to recover to regain their speech. Although on the whole they seemed happy and were making every effrt to speak it was heartbreaking to see their frustration when they couldnt get their words out. I feel very lucky to have met such a lovely group of people and hope to return again around christmas time. This is just another example of how The Stroke Association help stroke survivors throught their recovery

because errr, it is. or was..last saturday. 

The week before I collapsed I was planning a night out with a various group of girls at Oceana (classy I know) so you can imagine how much I was gagging for a night out throughout my stay in hospital and pretty much ever since! I decided to go to a club on my birthday sometime in July and if i’m honest the thought petrified me. I couldnt imagine being surrounded by drunken, well idiots but my friends reminded me that i’d be surrounded by friends so I had nothing to worry about. I booked a booth out at Madame Geisha’s and began to get excited for my first alcoholic drink. Although some stroke survivors have a pint or 2 on a regular basis a doctor in hospital told me to avoid drinking for 6 months because of a risk of 20% of survivors suffering from seizures from alcohol. Knowing my birthday fell just before the six month marker (it would have been six months yesterday or today, depending on wether you view it by date-27th or day-sunday)  I decided to ask my consultant what the deal was with having a cider on my birthday. He assured me that as long as I wasnt binge drinking (7 units or 1.5 of a ‘strong’ cider) my brain would be fine but that I may feel the effects of alcohol much easier and may fall over drunk and break a bone. Realising that i’m not a brittle old woman I decided that falling over most likely wouldnt be that bad and if anything it would be more dignified than most of my drunken falls. 

I had a very chilled out day so that I wouldnt be tired in the evening and after getting ready I flipped a coin to decide wether I should have a pre-drink or not. the coin said yes and Adam (my hero & student physio from rehabilitation) gave me my first alcoholic drink for 6 months, a pear koppaberg and my god was it delicious! I’m not going to lie I was petrified so I drank about half before going out and then had another half a cider from Christian in pitcher and piano before heading across to Geishas where all 30+ of us partied the night away.I should probably point out that I went totally unaided apart from the occasional friends hand to keep me steady, something a lot of my friends seemed impressed about Apart from an idiot bar man who laughed at me when I asked for the disabled toilet key (OK I don’t really need it and I certainly don’t look it but  I am legally classed as disabled and hey, gotta take advantage of the queue jumping perks!), Problems sorting out the booth drinks bill (which my beloved Mark Pinder kindly sorted out) and a drunk friend or 2 once I chilled out a bit the night was just as fun as I had imagined. I couldn’t believe the amount of friends that came out for me, I love you all so so much thanks for making my first night out incredible and supporting me through everything. although I would like to point out I out partied quite a few of you!! GO HARD OR GO HOME guys. haha just kidding…kinda.

Here are some pictures for you to enjoy. 

On Monday 15th august I went to see my consultant to have the botox reviewed we decided that I had seen small amounts of improvement (eg less clonus) but I still struggled to achieve having my heel down with my knee bent over my toes. They then decided to do a marclain block of the tibial nerve which is by far the most uncomfortable injection yet to see if my foot could be fully on the floor with a bent knee once the tone had been taken away. We discovered that I have muscle shortening in one of my muscles but by blocking the nerve it gave me an opportunity to keep stretching the muscle bringing my knee way over my toes and keeping my foot completely flat, my leg itself felt horrible, you know when you have an injection in your mouth at the dentist? It was like that only from midshin downwards. It lasted for just under 24 hours and I have since been able to continue the stretch with my heel down (although it is more difficult) so hopefully I have managed to save some of the muscle shortening. I’ll find out when I go back in a few weeks.

It was my second week back at juice last night and I’m loving being back. I grabbed sone food from waitrose caught a bus alone, without my stupid walking frame!!! Im not going to lie it was scary, I was mostly scared about crossing the road but nailed that, the bus was fairly empty so that was easy too (although an old woman did look at me as if she expected me to move from the disabled seat, sorry love but I’m recovering from a stroke which is probably much harder than your old age) the bus stop by juice was further away than I expected and I got caught up in a rush of foreign students which is never a treat! At juice I think I am getting on Ok my first hurdle when I went last week was unlocking the computer, pressing ctrl alt + del with one hand is not do able so I had to figure out a way to use my left hand which I eventually suceeded by using my knuckle. I think I’m getting on OK with the research and editing although I’m a little slower (anyone who edits try sitting on your left hand and see how less efficient it is!!) the only massive error I’ve made so far is thinking I had put the door on the latch but had instead taken it off leading to me locking out myself and 2 guests. Embarrassing but purely down to my blondeness and nothing to do with the stroke. I just don’t want to talk about it.

Yesterday I went birthday shopping with my mum. For ages I’ve been looking for the encouragement to leave the house without my ridiculous walking frame, I walked to the beach with my friends the other day which was easy because there’s hardly ever anyone on my street but yesterday mum decided to take me shopping and I decided not to take the frame. OK so we parked at the shopping centre but it still meant I had to walk through the carpark and around a busy mall before roaming around shops picking up clothes and trying things on. It felt AMAZING and I wasn’t as scared of people around me as I thought I’d be. The next step for ne now is to go for a walk alone without my frame. I think I might try and do this on Wednesday when I have to catch a bus to Juice 107.2 where I have started interning again! A big first step but I think I can do it.

I had my community rehab discharge planning meeting today. I am SO ready to be discharged it’s not even funny, I’m losing patience with one of my therapists and it seems silly that I have to hang around all morning (sometimes all day) to go through exercises I can (and do) daily without them here. Now don’t get me wrong there was a time when I felt that I needed them but I have reached the time on my recovery journey where I need to move on. The dilemma now is where do I take my rehab next? As I have mentioned I have been looking into training with physios assosciated with ARNI, I’m also applying for funding for a saeboflex and I have began hydrotherapy once a week with my current physio (she will be carrying this on past the discharge date to ensure my safety in the pool environment) Then there is also NHS outpatients and a clinical trial I have been looking into involving botox in the hand. Its so hard to have all these decissions to make. Ideally I think I want to be seeing a physiotherapist once a week, doing daily exercises & occupational therapy alone, using my saeboflex twice a day for 45 mins as recommended and attending hydrotherapy at least once a week. Lets see how it goes.

Oh I got allocated to the meds group for the heart trial. I’m gutted. I dont think I realised how much I wanted the hole closed untill they said i was in the blood thinner group instead. It’s good in a way though because I can still have the hole closed after the trial has finished and they will hopefully know how effective it is by then but if i decide to go travelling in 3 years they said I can pull out at anytime and have the hole closed then so It’s not as if I no longer have the option & in the mean time I dont have to have surgery woop.

I went to meet with the nurse and doctor running the PFO (hole in heart) closure trial and I decided to sign up for it. they said I’ll be the youngest to ever take part in the trial! I should find out today which group I get put in. Fingers crossed closure…I think