This is a post for my own benefit, to remind myself about how I’ve been managing this week.
Last Saturday I went to a Christmas ‘party’. This is the first event of this nature I’ve attended since my stroke. Why so? Well, at a party, one must generally stand up in a space of limited dimensions, carry a glass or plate in one’s hands, and hold a conversation. Performing just one of these activities is hard enough for me now, and doing all three simultaneously is very difficult. This is why it has taken me almost two years to accept an invitation to a party at someone’s home, and I have to say that I will have to think very hard about accepting another. I did not enjoy myself. As you might imagine for someone whose left side is much weaker than her right, I am now hyper-aware of being unbalanced, and appearing physically clumsy. The normal bodily proximity of these occasions is a source of real horror for me, and last Saturday, every time I had to step out of someone’s way I was reminded of my disability. I tried to avoid being bumped into by sitting down, but it is difficult to hold any sort of conversation from a seated position in a room where everyone else is standing. Not for the first time, I reflected on one of the basic sensations that wheelchair users must deal with every single day — the feeling of being talked down to. While I am capable of standing up if I need to speak to someone, my own feelings of exclusion were exacerbated by the fact that I couldn’t hear a fookin thing. The party was largely composed of academics, and it was by no means a rowdy occasion, but I found it pretty impossible to pick out either my own voice, or that of the person I was talking to over the accompanying 60s soundtrack and the low hum of other people talking. I managed about 90 minutes of this hell before my brain decided it had had enough. It really was as if something switched off and turned me into a neurological Cinderella: suddenly, my leg refused to work properly, my eyes and ears suffered a sort of sensory overload and I had to go and sit like a post-stroke zombie in a quiet room, then get Tom to take me home. It took a good half hour after I had left before I could think clearly enough again to be able to string a sentence together.
The whole experience was rather disheartening. It really made me think about how normal social activities – a gathering of a few people in a room – can really pose an insurmountable hurdle for those of us with brain injuries and a whole host of other neurological conditions. In my own case, it was the kind of noise that made things very difficult for me: if there had been more space, and less music, my brain would have found it easier to focus on the ‘foreground’ of the conversation I was trying to conduct, without becoming befuddled by the ‘background’ hubbub. I was fine, for example, at a reception I attended recently at the Shetland Museum which was held in a large airy space with sharp acoustics and no background noise.
Anyway, I had picked myself up enough the following day to go for a walk in the Highlands, which I always find restorative. On Monday I felt well enough to attempt another first: managing two cities at commuting time. I traveled on a train to Glasgow, got a bus out to the University, and attended a meeting about an interesting knitterly project with which I hope to be involved (more of which later). The company was stimulating, the meeting was interesting, the transport was crowded, and both Edinburgh and Glasgow had that insane, festive, locusty feel they get at this time of year, but I managed it without a stick, carrying a bag, and in ‘normal’ shoes. I returned home tired but pleased. This was definitely a step forward.
On Tuesday and Wednesday I tried to “pace” myself as I generally have to do after a busy few days, but on Thursday I had a seizure. This one began in quite a disturbing way, as I woke in the morning with a feeling of intense terror, opened my eyes and then found that I couldn’t see. This combined ‘aura’ of an adrenalin rush together with visual disturbances / blindness is quite characteristic for me, and I am actually much less nervous than I used to be about these events (which my neurologist reckons are on the borderline between migraine and epilepsy) but it was still bloody annoying. Anyone who suffers with these sorts of things things will tell you that they leave you feeling like a brick has been thrown at your head. I couldn’t get out of bed, and Tom had to restructure his day around taking Bruce out, along with the other routine activities that I usually manage.
The days after a seizure are usually quite difficult for me, as they always involve fatigue. I’ve been thinking about how I would describe this neurological fatigue to someone who hasn’t experienced it, and I would say that it is very like the feeling of overwhelming malaise you have when suffering from flu. Added to this, the world seems to recede behind a fog, and all of my post-stroke symptoms become worse: my leg is more wonky, my hearing more unreliable, I begin to have trouble finding words. It is not easy to just get on with things when one is feeling like this.
A couple of months ago, I would have probably have put everything on hold and spent a few more days resting until I was feeling properly better. But I have had the sense recently that it might be more important to struggle through the fatigue and feel a bit shit than not do anything and feel even shittier. So on Friday, despite feeling pretty rotten, I managed to spend a few hours with Mel photographing her sweater in the Botanic gardens, and then yesterday I joined Mel and my other knitting buddies Sarah, Bex, Ysolda and Gudrun at Sarah’s house for a lovely festive gathering. Yesterday evening I felt like my head had been run over by a tank, and I had to sleep for a good twelve hours to recover, but not only had I managed it, I had had a good time.
Looking back on this week, I would say that I ‘overdid’ things at the beginning, and that this was at least partly responsible for the fact that I had a seizure come Thursday. I should definitely have paced things better: I could have managed the party, or the Glasgow trip, or the highland walk, but not all three on consecutive days. On reflection, I’d say that the walk and the meeting were worth it. The party, on the other hand, was not. What I’ve learned this week is that there are some things that are definitely worth feeling crap for, and some things that simply aren’t. I will think very carefully before going to a party again; there doesn’t seem much point to me in struggling to hear and stand in a room full of people I don’t know very well, and then coming home with feelings of social inadequacy to add to everything else. On the other hand, it is definitely worth spending time with one’s friends, among whom one feels comfortable, whose company is enjoyable, and who do not really care if one behaves like a zombie or not.
So thanks for yesterday, ladies, and particularly thanks to Sarah for the tasty food and roaring fire. It was lovely to see you all again.