#5: Long time no blog!
Since returning home in August 2020 (how has it been 6 months already?!), I decided that the best way to continue documenting my journey was via my Instagram account, as it’s fun to work with whilst not consuming too much of my time. One thing I have realised is that whilst reflection is important, I need to move forward with my life. Taking space from writing has enabled me to become more present and adapt to this new lifestyle. Once I removed the pressure of writing this blog and instead used Instagram for regular updates, I instantly felt lighter and could focus on things that were more important at the time - moving back home, spending time with the people around me and my recovery etc. This blog has since become a space I can turn to if I feel like writing a longer post. Now here I am… 6 months later!
*Head over to my instagram page to see the latest updates if you haven’t already!*
It’s been an emotional rollercoaster since the bleed last May, and it’s still taking some getting used to. I want to be at a point where I feel ‘content’ with my situation, but not comfortable or complacent as there’s still so much I want to achieve. At the beginning of January, I was beginning to feel a lot more at peace and I cannot tell you how happy I was! When I say ‘happy’, by no means was I on top form all the time but I was consistently feeling ‘okay’. As the days went by, I was starting to feel more and more like myself - a feeling I had yet to experience since being home. A huge contributing factor to this was the introduction to more dynamic physio sessions; I was jumping, ‘running’ (see insta post) and working on my reaction skills through netball-like drills. For the first time in 8 months I was getting my heart rate up and feeling the same physiological benefits of exercise that I used to experience, even if I was performing them slightly differently. I was tapping back into my competitive, sporty-self and it felt so great. But as I mentioned on a recent instagram post, I soon suffered some secondary injuries putting these more dynamic physio sessions on pause.
At this point I didn’t think it could get much worse, but just as I began to get my head around ‘taking it easy,’ on 1st February I experienced my first ever seizure.
Let’s set the scene...
It was a Monday afternoon, I was sitting on the sofa, sipping a cuppa, when my left foot started twitching. I didn’t think much of it (as I’ve come to learn, the body is extremely unpredictable) but within a matter of seconds my whole left side started beating uncontrollably. Time slowed down and I could feel every muscle pulsating against my skin - I could even feel it under my ribs. I started to panic and couldn’t help but think the worst, was this another type of stroke? Mum and Lilly came rushing over and tried to calm me down. As soon as I realised my body wasn’t in pain, I was able to focus on trying to control my breathing and ride it out. The event lasted about 3-4 minutes, but even when the beating stopped it took a while for my muscles to settle. I was unable to move my left hand for a few minutes longer and for what felt like forever I thought I was back to square one - was my left side paralysed again? I immediately called my GP and secured an emergency appointment with a doctor who, based on the fact I remained conscious and hadn’t thrown up or lost mobility, told me ‘not to worry’. Obviously WORRYING, I gave my physio a call who informed me that I had most likely experienced a focal seizure (affecting just one area of my brain, hence my left side only being affected). She wasn’t too concerned but because of my age, pointed out that I should get checked out just incase, so off I went to good old A&E.
Focal vs Generalised:
After nervously waiting for several hours in A&E, I was finally seen by two doctors who carefully examined my mobility, sensation, vision and heart rate. Again, they weren’t overly concerned but admittedly didn’t know too much about neurology (I felt like I knew more than them!). They decided against a CT scan due to the high exposure to radiation and advised me to call my consultant at St. George’s to get his opinion the next day. I went to sleep feeling a bit more at ease knowing that there was nothing acute going on in my brain, but equally I was terrified of how unpredictable my own body was proving to be - despite knowing more about it now than ever before.
The following day I had a physio session with Jenny who, as always, calmed my nerves and made me feel more positive about what had happened. She emphasised that, although seizures are common post brain surgery, ‘there's also a chance this might never happen again’. Feeling slightly more relaxed, I was looking forward to a phone call with Dr. Iorga - my consultant and surgeon at St. George’s. I was hoping that he would also put my mind at ease, but I was wrong. He didn’t really have any answers either. He emphasised that it was strange to have my first seizure this far on post-op and if it happens again, I’ll have to go on anti-seizure medication which, 'wouldn’t be great because they have side affects’ *instant panic*. He also expressed his frustration at Frimley Park Hospital for not doing an MRI (magnetic fields & radio waves used during this type of scan are harmless, unlike the X-rays used in a CT scan) and told me to see a local neurologist and get scanned as soon as possible.
The days dragged and it was impossible not to worry. Any slight twitch, spasm, headache or unfamiliar sensation would send me into a panic. I was struggling to sleep and couldn’t help but feel anxious that it was going to happen again. Similarly to when anything bad happens in life with unexplained answers, you naturally start blaming yourself. Did I bring this on myself? Have I been overdoing it? I voiced my concerns to Jenny who assured me that this was not the case. Stress can bring on a seizure (I definitely wasn’t stressed), but a seizure due to over physical exertion was extremely unlikely. Although this was comforting to hear, I still felt so unsettled. Just as I was beginning to understand my ‘new body’ and how it all works, something else is thrown my way and I go back to feeling so out of control, as if it wasn't a big enough challenge already!
Although things could have been a lot worse, experiencing a focal seizure has been a huge reminder of how serious my condition is and that, although I’m trying my best to move forward, it is so important to check in with myself and slow down if need be (even if my mind wants to push on!). The level of change in my body’s ability has been difficult to adjust to, especially when the way that my mind works has remained the same. For 22 years I was used to operating in not just a physically fit and able body, but one that was constantly challenged through high intensity levels of exercise. The connection between my mind and ‘new’ body is something I’ve really had to work on. Wrapping my head around the fact that my body’s limits (although still ‘progressing’) now work at a slower, more gentle pace, when my brain knows nothing more than to support the body of someone who was once so physically able, can be a really confusing and conflicting feeling at times. Through my continued attempt to accept and adapt to this ‘new’ body, it's getting slightly easier to navigate my way through this feeling of alienation and disconnect.
Once again, this seizure is a a big reminder that 'you never know what’s around the corner'. As a result, it has put my recovery into perspective. It’s made me realise that the goals I’m aiming towards are of course important to me, but not entirely necessary to live a good life. The phrase ‘health is wealth’ is flung around so much, but it’s so true. I think with life in general we’re always striving to reach our next goal — which yes, can be a great way to keep us motivated moving forward — but once that goal is reached we barely take a minute to congratulate ourselves on how far we’ve come before setting the next. I’m trying so hard to find balance between aiming high, whilst also trying be happy with where I’m at right now.
After liaising with my GP I managed to book an MRI scan for Sunday 7th February, and a phone appointment with a neurologist to discuss the results the following day. The scan was clear *thank God* but as expected, it highlighted the scar tissue on the damaged part of my brain where the bleed took place. The neurologist talked me through the scan and explained that the scar tissue was the likely cause of seizure, as it acts an interception in the brain’s electrical circuit. She advised me to start taking medication to prevent another seizure from happening, as the scar tissue will always be there. However, my gut instinct didn’t like this idea considering there was also a chance I might not have one again. I discussed with Jenny to see what she thought, and she agreed with me. To start anti-seizure medication would be a long-term commitment, with side-effects that might not even be necessary. I also remembered the telephone conversation I had with Dr. Iorga, who implied I would only start medication ‘if it happens again’. Based on these factors I decided against medication, for now. Obviously I am aware that I could have another seizure (which may affect my whole body next time), but considering my current lifestyle - living at home with family - as long as my nearest and dearests know how to respond if I do experience another episode like this, I should be okay.
FYI — this is how to respond to someone having a seizure.
As the weeks have gone by, I am finally coming to terms with what happened whilst also trying to continue as normal knowing that there is a risk this could happen again. Despite the odd ‘bad’ day, I am generally feeling more positive and a lot less tense. I’m back on track with my physio programme and ready to move forward. Whilst I do still get the odd unsettling wave of sensation come over my body, followed by a tingly left hand and numb foot, I’ve come to realise this is most likely the start of a panic attack. This would make sense because ANY emotion I feel these days displays itself through tension in my left side. To help put things into perspective - as humans we all naturally tense up in situations or feel the physical symptoms of different emotions. My body just has trouble grading its response causing everything to be heightened. When I do feel something abnormal, I try not to worry too much about what it could be (easier said than done!), and instead let my body express how it’s feeling. A little self-reassurance accompanied by a few deep breaths and miraculously things start to improve. We hear it all the time, but the mind is so bloody powerful and I feel so thankful to still have the mind that I do.