Movin’ on up

I took a bit of a hiatus from blogging during Christmas – so first and foremost, Merry Christmas! I hope the break was a pleasant and food filled one.

In the run up to Christmas, I’ve had so many updates to my health in about the space of a week that it’s just been a bit overwhelming to deal with. Each deserves a separate blog post of their own, so watch this space to hear about the results from my neuropsychological testing, my seizures and whether or not I have epilepsy!

However, this post is dedicated to the most pressing update. A few weeks ago at the beginning of December (the 8th of December, to be precise) I called my neurovascular nurse to update her on how I had been doing, and find out what the next course of action was, as I had had no contact since my birthday present back in October. We discussed how I had been doing and I gave her a brief breakdown – fatigue was getting less and less, energy levels more and more, I had gradually gone back to work and started studying again. She was pleased to hear I was trying to get back on track with life and gave me yet another present – her blessing to return to the final part of my life that was still on hold.

Not a pom-pon in sight.

Not a pom-pon in sight. Taken from http://just-werk-it-girl.tumblr.com/

I had to make doubly sure. And triple sure. “You do know that cheerleading isn’t about waving pompons around… it’s a physical activity with inversions and high cardiovascular activitiy and potential falls, right? It’s almost like gymnastics. I could fall and hit my head.”

She was aware. She knew. And she said it should all be fine, now that my varix was gone. The collapse of my varix meant the collapse of most of the risk I was carrying around in my brain.

“Just go back gradually. If anything gives you a headache or makes you dizzy, stop and stay at that level. And try to avoid any sudden movements of the neck that would affect the vertebral arteries. That’s the only thing that would risk increasing the intracranial pressure in your head, which would increase your risk of rupture.” (To the non-medics out there, that basically means no whiplash-type movements… to the cheerleaders out there, that basically means no snapping in baskets).

So that was the final piece! I could go back to training! Over the past 9 months I had become so frustrated at first my physical limitations to physical activity (nobody tells you just how fast much your muscles waste away when you’re lying in a bed, recovering) and once the physical limitations started to dissipate, the mental limitations. I immediately made plans to go to an open gym session that night to celebrate! The green light from my nurse did remove some mental limitations, although I still found myself hesitating a lot more than usual. Which is understandable, really. Nevertheless, words cannot express the joy I felt at finally getting ALL aspects of my life back on track.

Example of a cerebral (brain) angiogram. This is a normal one. Ergo it is not mine.

My nurse had also given me a second point to be excited about – my team had decided they needed an up-to-date image of what was going on in my head before we start to think about gamma knife. So I was to have an angiogram (an imaging procedure that looks specifically at the arteries in my brain) “at some point between Christmas and January”. Whilst it was great that I had some form of progress with Ralph, the vague timescale meant that I couldn’t plan anything. I had no idea if I would be here or with my parents for Christmas, where I would be for New Year’s, where I would be for my boyfriend’s birthday (which fell exactly halfway between Christmas and New Year… and is actually today!)… And the other factor was, once I had the angiogram, I would need somebody to drive me back from the hospital as walking is prohibited for the first 48 hours or so.

My hospital letter arrived a week before Christmas and informed me my angiogram would be on the 30th of December. Perfect timing! This meant I could spend Christmas with my parents, my boyfriend’s birthday with him and New Year’s (voluntarily and medically) confined to the sofa. Which is what I had hoped for anyway. Despite having already had 3 angiograms, I also received a handy “What to expect when you’re expecting” sort of booklet, except for angiograms. For those who don’t remember or haven’t yet googled it, the reason why caution has to be taken with walking after an angiogram is because a catheter (a thin plastic tube) is inserted into my femoral artery (the main artery that supplies the leg) and is threaded up to my brain through the arterial system. Yep, they get to my brain from my leg/groin area. Cool, right? Whilst it does give highly accurate, real time images of my cerebral circulation, the fact that they have to leave a puncture wound in a major artery which is likely to bleed out unless if proper care is taken…. You get the picture.

The only thing I’m not looking forwards to about this angiogram is the fact I have to be in the hospital by 8am. Yawn. The previous three times I’ve had an angio, I’ve been unconscious – the first two times because the combination of my stroke and the pain medication knocking me out, the third time because it was actually an operation. Hopefully this time I’ll be conscious and I’ll be able to frustrate the team with my genuine interest and questions of the Circle of Willis (the main set of blood vessels at the base of the brain) and other neurovascular structures.

I’ll end this post with a song that I feel reflects my current mood. I’m movin’ on up!

‘Cos I’m moving on up. You’re moving on out. Movin’ on up. Nothing can stop me.

Neuropsychology

The past few months have been a great interruption in uni. Really great. I’ve loved lying around, unable to do anything due to the extreme fatigue that comes with having a brain injury, being completely overwhelmed and watching my brain shut down by seemingly innocuous stimuli such as rush hour on the tube and just feeling quite frustrated at not being able to complete my degree. But as September rolled into October, I started to feel stronger, less tired, less foggy and more determined to get myself back to my old life. With a few modifications for Ralph, of course, but as close to my old life as possible.

The first step was work. I had held a part time job as an events first aider for the past three years which made going back to work gradually very easy, as I sort of chose how much per month I wanted to work. My first shift back was exhilarating. My mind was constantly split between “am I truly ready to jump back into life and work” and “Oh my word, I’m so happy to finally get on track again!” My shift partner was my usual partner in crime, which helped massively with the first thought. Since then I have been working increasingly more, whilst feeling proud of myself for I had had a huge haemorrhagic stroke 8 months ago and nobody could tell! It felt great to gain some independence back and, importantly, get paid and have some form of income. My financial state up until now had been dire, as apparently when you get ill and take a year out there’s not much help you can get financially. I was ineligible for Student Finance loans as I had already received it for four years. I was ineligible for NHS bursary as I wasn’t in clinics. And as an “external interrupted student” I was both a student and not a student and thus ineligible for help from my university. I had many long meetings with student advisors, the conclusion of which was essentially “Sorry. Can’t help you. Move back with your parents.” But I couldn’t move back with my parents; they didn’t live in London which meant any time I had a hospital appointment it would cost me about £40 in travel. Not only that, but the closest neurosurgical hospital to them was a good 2 hour drive away – so if Ralph decided to rupture again, my chances would be very slim compared to the 20 minute journey I would have to my hospital now. After having several doors shut in my face and being told “Sorry, we can’t help you”, it felt amazing to be able to start to support and help myself at least financially.

Anyway, I digress. Work was going well, so that was one aspect of my old life I was clawing back. The other, however – the student part – was a lot more difficult. When I had my stroke in March, everybody agreed I would be in no state to take my exams in May, so they were postponed till August. When I had my surgery in June, everybody agreed I would be in no state to take my exams in August, so they were postponed till the following May – leaving me with having to take a year’s break from my studies. I had already decided I would study slowly and thoroughly from September onwards for these May exams, but I was met with several mental and cognitive barricades. I had already attended all of my lectures, done all of my coursework – all I had left were my exams. And I had very good notes from the previous year. But every time I looked at the page, even though I saw the physical scrawl of my notes across the page, I had absolutely no memory whatsoever of writing it. Or being there. Or knowing the information. It’s impossible to describe the frustration of having information in front of you that you once knew so well, joked about with peers so often, made geeky references to on a daily basis…. and now instead have a black void in your memory where it once was. I tried to change this by revising every day, but suddenly studying had become laborious and inefficient. I mean, studying was never going to be easy, especially when it was neuroscience, but trying to study after having a brain haemorrhage was near impossible. Mentally, it felt like trying to swim through concrete. Imagine your life; starting at primary school and trying to figure out abstract learning methods based on the simplistic tasks you were given. Then you get to high school and the level is so much higher and harder, so you adapt. Then you get to 6th form and you do the same. Then you get to university and you do it one more time and by the end of your degree (or at least, halfway through mine seeing as mine isn’t a 3 year degree), you get to a point where you feel you have refined and streamlined your learning methods and style. But then something happens and mentally you go back to your primary school level of learning, whilst dealing with university level knowledge. That’s how revising felt. I couldn’t concentrate for longer than 10 minutes, I couldn’t focus, I was constantly getting distracted and it took me about a week just to go through one, one hour, lecture.

Obviously this was not conducive to my studies. I tried different tactics, the one that seemed to work the best being having 10 minutes “on” and 5 minutes “off” – allowing myself to have that 5 minute break seemed to stop me from procrastinating throughout. Whilst I’m sure most students can relate to the demon that is procrastination, this was on a whole other level. When my nurse called me a few weeks ago I filled her in on everything that had happened (including my apparent seizures, which will be covered in another post) and she spent some time assuring me that I shouldn’t try and rush back into studying; it was natural to be experiencing this. Nonetheless, she referred me to the neuropsychology department for an assessment. I got the call the next day to arrange an appointment, which was on the 20th of November.

Yet again, I approached this hospital appointment with a mixture of excitement and wonder. I had briefly studied neuropsychology in my 2nd year; even written an essay about it. I met up with a good friend for a catch up, who actually worked as a neuropsychologist, and we discussed my various issues and the upcoming appointment with interest. For those who haven’t googled it or figured it out yet;

Neuropsychology: the study of the relationship between behaviour, emotion, and cognition on the one hand, and brain function on the other.

Basically, it was the study of how my cognitive processes – my thinking, perception, recognition, processing, memory, attention, focus and all other sorts of stuff – have been affected by what happened to my poor brain. I already suspected I had some mild form of prosopagnosia (inability to recognise faces) and dysphasia (impairment of language processing… like always having something on the tip of your tongue). But I had no idea what was going on with my memory.

I arrived ready for my 9am appointment, a bit apprehensive that the early (for me) start would cloud my test scores somehow. After giving a brief history to the neuropsychologist the tests commenced. There were tests involving words, tests involving pictures, tests involving faces, tests involving numbers, tests involving shapes… there were a lot of tests. It will take too long to list them all, but I was incredibly mentally fatigued at the end… which led to physical fatigue. I got the opportunity to rest as often as I wanted, which allowed me to analyse the purpose of each test. Things that I remember struggling with were:

  • Visual recognition; I was shown a set of about 15 photographs, one per page, and told to remember them. Then I was shown 3 similar photographs per page and had to point to the one I had been shown previously.
  • Facial recognition: On the same theme as above, I was shown about 15 faces, one per page. Then shown two similar faces per page and had to point out which one I had seen. I don’t think I got any of these right!
  • Object recognition/naming (?): Different items, animals, objects etc. were shown to me and I simply had to say what it was. What shocked me was for about 40% of the items, I knew exactly what it was – I could describe in a lot of detail what they were/what they were used for, but I just simply couldn’t name it. This is known as “anomia” I believe!

These were just things that I had noticed. But apparently the neuropsychologist wasn’t too bothered by this, as at the end she told me that my main issue was actually my attention. My actual memory was functioning fine, it was just that I couldn’t pay attention to things to commit them to memory – so they were never there for me to remember in the first place. I will be going back on the 8th of December to work through these issues – I’ll try and remember as much as I can, as I’m pretty sure I know a lot of students that could use these techniques too! 😉

I suppose in a way I’ve been very lucky and unlucky. Seeing as my stroke was so specifically localised to my temporal lobe, it didn’t affect my physical capabilities (mostly controlled in the parietal lobe) apart from the occasional fatigue. But it has certainly affected my cognitive processes. It’s such a hidden deficit that on the outside, I appear to be perfectly normal and healthy, just like how I was before. I was warned that going back to studying would be hard, but trying to claw back my mind from what it used to be is one of the hardest things I’ve had to deal with. I don’t even know if this is going to be my new normal or if I’ll be able to improve it. Hopefully with the help of the neuropsych team it will be the latter, but only time will tell!