I thought it might be worth an update on Buttercup’s effects.
I was finally told by the doctors a few days ago that my new world is most likely due to the tumour rather than the drugs or the seizures I had at the beginning as my ‘symptoms’ haven’t changed and I’m now off all the drugs apart from the epilepsy anti-seizure ones (yay!) which have little side-effects.
It still baffles me how my entire world and perception can change overnight despite the fact it’s likely to have been there for so long but apparently it could have just grown a tiny little bit on that day/week/etc which could cause all the difference.
My new Buttercup world hasn’t continued to change since I landed here so I’m now starting to get used to it and the new way people including Danny, Loli and everyone else, streets, my house, the world is looking and it’s now becoming my norm. Even more weird is despite my memory being so affected I can still remember glimpses of how my old world looked.
Other affects include my memory which is totally hit or miss. A lot of the time I remember things I would have struggled normally to and then other times I have zero recollection. The latter is predominantly short term which could also be because of everything my brain has been trying to grapple with. One of the neurology doctors seemed offended that I had no recognition of his face despite apparently spending 40 minutes with him in the hospital but I mean…
I also struggle to remember what conversations I’ve had with friends, often having to ask them if we’ve even spoken since everything happened although normally I’ll have a vague memory. And I’ll forget within seconds what we’re talking about or what I’m looking for and even in a few extreme times where exactly I am if I’m out but if I really try then I can pull it back and recall.
Obviously that leaves you feeling rather vulnerable and worried what people might think but at the same time I know, I really do, that all my friends understand and would never ever judge.
I also get tired but a lot of that is because I’m waking up at 5am every morning at the moment. I’ll get to a point in the day when I just need to be in a bed and asleep.
Unfortunately sleeping during the day is a little problematic just because it’s the only time at all I ever get scared about having a seizure. Closing your eyes and letting yourself be sucked into a dream is what you can imagine being sucked into a seizure would be like. It’s totally in my head and the doctors have all reassured me that I’d have more warning but it’s still there in my mind not letting me relax.
In some ways I imagine this might be what it feels like for someone who has the beginning of dementia which used to absolutely petrify me. Funny thing is now that whilst it all might sound pretty horrendous it’s actually ok. I laugh A LOT about the crazy things I do, say or forget and thankfully everyone else laughs with me. I also have so many really really funny memories to draw from when I might not know what’s going on. I’ve had some of the funniest times with my crazy group of friends that can put a huge smile on my face at any given moment so as long as they don’t disappear or my friends don’t stop reminding me then we’re all good for many many more years to come.