Haven’t been on in a long time, but just need to vent a little. I’m nearly 14 years post my initial discovery of a brain AVM, which caused a bleed. Although I have made a good recovery, the effects of an acquired brain injury haven’t left me. I deal with fatigue and short-term memory loss, but the new normal of Covid has left me very deflated. While I am NOT immunocompromised, the stimulus of this brave new world is exhausting, and quite frankly, doesn’t always make sense and becomes very hard to process. Where I could normally walk through an entrance to a mall store, I’m being squeezed into a tiny opening. (How this “limits the spread” doesn’t totally make sense. I respect that it is done, but for someone who processes things differently, it is difficult to justify.) I have to second-guess and implement additional thoughts before using a public bathroom. (Do I have my mask? Have I touched too much stuff? Am I following the rules? What are the rules, anyways??)
Just feeling really exhausted by all of it. Luckily my jobs distract me, but even those don’t make sense all the time. I walk away from a Zoom meeting with a quick panic, forgetting that the six other people were not actually with me, they are safe in their homes and we did NOT overcrowd, because you can’t on a computer!
Just trying to stop my head from spinning!
Hello! It’s good to hear from you and I am sure you’re not the only one to find it a bit overwhelming. Hopefully, this won’t become a permanent “normal” and some time next year we can shake off this thing. So we just have to do our best for a while.
Don’t you think it’s a bit funny when you see crazy things being done to allegedly reduce the spread? I agree with you that not everything you see makes sense (or, definitely doesn’t seem to). I do understand that where you’re struggling to process things it won’t be funny at the time but some of the things do seem a bit crazy.
The main thing that makes me laugh is the people going round “wearing” a mask but it’s pushed under their chin. WTF is that all about? I mean really?
Keep on keeping on. I think you’re doing great.
Yes, I do love seeing people wearing their masks on their chins… another favourite is the people who take off their masks in a store to answer the phone or to make sure that the person they are talking to can understand them!
Hi there! I’m 23 years post AVM. I have a young child and am finishing a Masters degree amidst this. I feel you! Life is difficult enough never mind piling a brain injury and a pandemic on top of it. How are we supposed to keep track? I think we have to look at the pandemic as the new normal we experienced in our AVM experiences. We can only do the best we can. I forgot to wash my hands after touching the mail! I forgot to wipe down the table at a restaurant! It’s frightening because one misstep could lead to getting the virus. Yet, we have lived so long with a brain injury- an unseeable parasite much like this virus, if you found a new normal post AVM I’m confident you can find a new normal now!
Thanks aruski22! Wow, good for you!! My head spins just trying to manage a full time job and some casual part time work, on top of having time for “life.”
I am someone who always struggled with change; new furniture of all things will leave me feeling fatigued for a week, just because my brain takes that time to process the adjustment. Add Covid change, and I’m exhausted 80% of the time now.
I’m not too concerned for my own health since my immunity isn’t compromised, but I have elderly relatives to consider, so that weighs on me sometimes. More than anything, it is the processing that is hard.
Last year, I had a major turn around for the better when my social life improved. I was happier and exercising more (dancing usually at social events), and I was so much less fatigued and not as concerned with my memory loss. Now, I’m kinda back to the way I was some fourteen months ago, so it’s dealing with the new normal of Covid, on top of losing my social life that had totally improved my attitude and general physique.
I keep looking for replacement activities to get me back in the swing of things.
I live in Ontario too. My daughter had an AVM bleed when she was days from turning 10. She’s 13 now. Her bleed was horrific and she’s been working hard to get back to herself but the more time that passes the more I’m worried she won’t be a fully independent adult.
Anyway I think a lot of what you’re feeling where the virus is concerned is what everyone is feeling regardless of their medical past but I imagine the impact for you is stronger because you already work harder to process things. Does that sound about right?
I feel like I was doing ok until June but I’m a teacher so all summer I’ve been anxious about the school reopening plans. I have myself to consider and I teach high school in Hamilton and my 2 children who go to school in a different board. My survivor is in her last year of elementary so no size reduction for her class! It’s scary but she really wants to go back to school. She’s lonely. She’s seen a few friends this summer but she just can’t get out independently like other kids—can’t ride a bike due to her deficits and can only walk a short distance. Hot weather really affects her too.
Anyway I’ve been a wreck for the last month. Vivid dreams every night and I wake up exhausted. I read somewhere that there’s something called anticipatory PTSD!
Anyway, I hope knowing that your brain injury is not fully responsible for how you feel might help you some how!
Thank you so much, AllieG! I was the same age as your daughter when I had my first bleed. I made a full recovery, making honour roll every year in high school. At the time of my bleed, I was paralyzed on the left side and suffered severe short-term memory loss and fatigue. My strength is fully back and the cognitive side effects improved significantly. I think it will be good for your daughter to get some normal life back… I know that my friends and family give me strength every day.
With that being said, I am currently 15 days past a second bleed. I had a stiff neck two weeks ago and immediately went to ER. Knowing my medical history, and having the same ER doctor from 14 years ago, I was rushed into a CT scan where bleeding was discovered in the ventricle, thank goodness not in the brain again. Luckily I am home and the blood seems to be draining on its own. A CT next week will confirm this. But I have had the Gamma Knife twice, once in 2007 and again in 2012, but the doctors said the AVM grew back. I was not a candidate for embolization last time, and a third Gamma Knife may not be possible, so if anyone has a suggestion for alternative medicine, I’m all ears.
Love to all,
I’m now almost two years post bleed and still struggling to feel like myself again. I published a novel on Amazon, which has been a life goal of mine, but it’s not fulfilling me the way I expected because I still feel exhausted from the effects of the second bleed and the three-year post-Gamma knife waiting period. This is not the price I expected to pay to earn myself a published book, but it feels like some balance of the universe has been messing with me.