Stroke: My experience of early recovery

So I’m only getting round to this now, after a month of ups & downs for me in terms of my stroke and recovery from it, but it has given me time to think about things I haven’t shared with you before, so I figure now is the best time.

It couldn’t get much lower:

I had taken a stroke in my sleep at 22 on the eve of the New Year’s 2017. That was the day things changed for me both physically and mentally, as I became aware that my left side was not responding properly in the ways I normally move. As time went on, whatever function I had in those limbs faded away in the hospital.

after a few days of intense rest because I had a stroke (duh), I was told I would be seeing a physiotherapist and team of helpers who were trying to get me on my feet again, but in the worst way possible. You might ask how do I know that, well let’s examine that.

During the 3 weeks I was in the first hospital, they had me practise getting up out of a chair, walking while in between 2 plinths, and putting pressure on my arm whilst sitting down. Now this all sounds great! And it makes you think you’re going in a fantastic direction. I mean all this in 3 weeks, sure I’ll be home soon?

No i would find out that all of that was just a sweet dream as the day after i arrived i met my physio and after telling her that i had already been up walking, she proceeded to test that claim and that is when i woke from the dream and realised it was a nightmare, she stood there perplexed at what i said as i briefed them on everything i had been through in the previous hospital and then proceeded to state that she was extremely angry because they put me through things far too quickly and had given me a false sense of confidence which as you could imagine was just crushing so i was told that they would see me the following week as i was seen on a Friday afternoon i sat on my laptop watching YouTube videos trying to distract myself from the feeling of anger and annoyance that i now felt as i now just realised that im back to square one and just wanting things to go right for once.

Day 1: flying too close to the sun

My first day, I got the full rundown and diagnosis of my actual physical condition, which was left sided weakness associated with stroke clonus in the affected side hand, arm (which simply put is intense and uncontrollable shakiness after a minute or two of intense movement, to which the only way to combat it is to stop doing anything with the affected side for the day) and supination of the left ankle, which means my ankle wants to roll out and my foot curls inward. Also, did I mention I’m hyper-mobile, which means my knee could buckle inward without me controlling it?

One month later:

Fast forward 1 month, I’m still in the hospital. My recovery isn’t going as I’d hoped. I’m down in the physio department 2-3 times a week, still wanting more. I’m progressing slowly. I can sit and stand more or less, but my balance is just not there. I’ve been given a splint for both my ankle and my arm,

I enjoyed getting out of my room for physio. I’ve met a great team at the physio department. My days are better in terms of what I’m doing, but my progress is slower than I hoped I’d be as if i even knew anything about recovery time from a stroke. Looking back on why i thought this it’s because I had a high sense of self critique for everything I did. Although I think my main reason I wasn’t losing my mind is that I got to talk to 5-7 people for 30-45 mins, 2-3 times a week. I enjoyed those times more than the physiotherapy.

During this time, I met a girl named Caitlin, who was brought in for training placement as part of her college course. She introduced herself to me, and then was told she would be here for 6 weeks and participated in most of my physio sessions. i was told I was a good example of several issues associated with stroke, and to be honest, I’m kinda used to it, as I’m a younger person and easier to get along with than many older people. Anyway, I spent that last day of the month getting reassessed in front of her, and watched her be quizzed, which was interesting to watch and learn a very small bit for myself.

I’m up on my feet more, but I’m nowhere near perfect. I’m down for physio 3 times a week at this point, which has been pretty consistent throughout this month and i’m getting used to shifting my balance as i walk something that until i was told about i didn’t think was a real thing, in fact i would say you take too much for granted in terms of your body that you truly don’t understand how much that is true until you have a physical issues with your body, anyway i’m still having trouble shifting that weight onto my left side the splint brace is helping a lot but i still am fighting myself because i’m scared of snapping my ankle, falling in the hospital and or finding someway of hurting somebody.

To try and correct these issues, they had me use a balance cushion. Then, they had me use a balance cushion in combination with trying to catch and throw footballs at Caitlin, which she was more than capable of, as she played similar high intensity games in school and in her leisure. I was not as accustomed to this, I was a run-down idiot with a stroke. Sometimes I overdo things, such as throwing way higher than I was supposed to or faster than I was told, which resulted in me wibbling and wobbling around like a weeble but defective one, as I tended to fall down lol.

Sticks and stones: Month 2

After some intense sessions I started walking more im still not perfect by any sense i still overcompensate on my right side not wanting to put any real amount of pressure on my left side out of fear of falling or hurting myself to the point where i wouldn’t be able to continue if they would even allow me to, at this point in time i’m now using a walking stick to help with my balance, this definitely isn’t my first choice i remember a disdain for any sort of aid to my walking when mentioned as i knew that i didn’t want help to walk i was always independent in doing most tasks and i wanted this to be one of them of course it took me few sessions to come around to the idea of using it as i could tell almost within minutes that my balance was improved but it did not make the “medicine” any less bitter-sweet to take,

After some thinking and the implicit arrangement that I would not be keeping it for my life, of course, this meant that I needed to put in the work to graduate from it, as it was the only way I would use the damn thing and I would be off of it as soon as possible. But still in the back of my mind, that could be anywhere from 2 weeks to 20 years. At the end of the day, the only thought I had was that I will get out what I put in, and I needed to put in the work,

Now when it comes to using the stick, when they gave it to me, I only had to use my right hand, which isn’t the most ideal arrangement, given that my right side doesn’t need the support, and that I’m already over correcting myself on my right side, mostly because I’m scared and don’t want to fall any way. To say it would be much easier if it could be used in my left hand. In fact, it would be best practice, but unfortunately my hand had other plans.

Treading a tightrope

Don’t get me wrong, at this part in my recovery I was doing better, but my arm was still not being very helpful. In fact, I would say it was being the opposite of what an arm should be. We use our arms in so many ways to grab, hold, lift and drag, but one thing I think is taken for granted is that it can also be used to balance out the person attached to it. In my case, that was doubly annoying, as my arm reacted to any effort, strain or even pain that I would go through. But this was my task to get back to my old life to be an independent person again, so I knuckled down and kept rolling with the punches, some of which were mine to myself.

Month 3: Homesick

At this point, the stick is attached to me. I’m sitting in my ward and to be honest, I’m a little down. At this point, I want more of everything, more physio, more time with friends and family, and most importantly more freedom. Over the past 3 months, I’ve been getting homesick. I’m not doing as much as I want to do in terms of what I think I can do. I’m chomping at the bit to put in more work physio wise, but I can’t because I need rest days. As any person who does any sort of physical activity, cumulative fatigue is a thing, and that’s why you should always include rest days.

My session times aren’t increasing, and I hear from other people in the ward that they don’t want physiotherapy, and to be honest, it’s bothering me. I ask a nurse who visits me why that is? And she looks me straight in the face and says “some people just don’t want to get better”, at this point it’s like red to a bull in my brain. I try to understand and rationalise it, but I can’t. Why would you want to live your life at any age with mobility issues? Why would you purposely want to burden others with your existence, having friends & family forced to bear you and your decisions? I still haven’t found a convincing argument for that outside people want to be a burden to the system, or at least that’s the one that rings the truest in my head.

I remember waking up one day crying because I wanted to see the outside again. At this point, I’d been in hospital for 2 and half months, and while I could see the outside through a window on the other side of my room, a view that I grew to dislike more and more. Although when I look back on it, I realise it was solely due to the fact that I could see my house from there, which had the so close but so far vibes to a tee, but there was nothing I could do! With every step of progress I made, it became no more apparent how long I would be in that hospital, for I was nearing my wits end.

The thought of heading home

In the following weeks of March, there were rumblings of me being discharged implicitly through actions taken by the physio team, such as learning how to mobilise from a car (learning which way is the best for entering and exiting a car), and checking the max distance that I can walk reliably before my affected side started to tire. It was found to be just under 23 metres before my gait became compromised. The issue was with my living arrangements, I was 26 metres from my living room, accounting for optimal parking of the ambulance, footpath and house length, and at this point, you may think why not use a wheelchair? My hallway was far too narrow for one, which meant that walking was the only option for me.

So after a couple of days, I get told they are aiming for the 27th of March for my release date. I’m happy, but also worrying (you might sense that as a common theme throughout this post lol) because now I have 3 weeks to increase my walking distance over 10 percent of what I’ve been able to achieve in 3 months. This seems crazy to me. I don’t think I can do that, but I have to try, right? Otherwise, who knows when or how I might get out of there?

I decide I’m going to buckle down and focus more on distance than balance, as my balance isn’t so bad thanks to the stick and the CaligaLoc, so I do just that. I have a few off days that make me doubt myself, after all freedom is now as close as it’s ever been, so I need to keep pushing forward. During this time, I meet the outpatient physio team, who are the most awesome people to get along with. They are very supportive and fun to chat with, but that is just a story for another time.

The day of.

So after 3 weeks of physio my best is 25 metres and thats it, thats me on my best day which isn’t ideal but i can’t do more than i can do especially not when im being watched by other physiotherapists, nurses and certainly not in a hospital, so on that day it was like a build up to the culmination of everything i requested to go ahead with the transfer hoping that they would let me i was told that there wasn’t much more that they could do for me in terms of “hospital recovery” the only issue would arise if i couldn’t make it into my house of course they made sure to tell me that i would have to be delivered home in an ambulance which is always a pleasant thought in case anything goes wrong.

I had already made up my mind that I was going to do this, and as the day progressed, I became more ready. I had friends & family waiting on me to return, I had a care service package in place, and more importantly, I knew that this was truly the next part of my journey down the long road (ahead) to recovery. That evening, I got word at 5.30pm that I would be leaving and heading home within the hour. I was so excited and nervous, and as I got word that my friends would be arriving just after me with a gorgeous feast of pizza, burgers, and chips. As i heard the time got nearer at 6.15pm i was told that it was pulling up and and as i said my goodbyes to the rest of the staff and was wheeled down and into the ambulance i was so grateful for everything and it all became more real as the wind breezed into the ambulance i could finally smell the outside within 3 minutes i pulled up as close to the outside of my house as possible but within 2 minutes i was lowered unto the ground and wheeled as close to the house as possible i got up and started walking and i had to snap myself into my new reality as i wanted to run down that street and inside but as reality dawned on me i realised that i needed to be careful i sauntered up to the door which now had a bar to hold onto for mobility when stepping up through the doorway i got inside the house and started walking down the same hallway i was taken out of over 3 & half months ago i got into my house and sat in the high back chair that was supplied to me as part of the care package.

A special thanks:

Thank you to all the fantastic physiotherapists that helped me in my darkest time and gave me a laugh when I needed it. Caitlin, Diane, Dierdre, Donna, Siobhan,

Sources:

• upper limb spasticity effect on mobility
  1. Jiang et al., ‘Effects of Self-Assisted Shoulder Elevation of the Affected Side Combined with Balance Training on Associated Reactions of Upper Limb and Walking Function in Chronic Stroke Patients’.