I remember going from breathing completely normally to having my throat completely swollen shut in somewhere around 10 minutes. “How much longer before I turn blue and pass out?” I wondered to myself as the nurse was drawing up the Epi in the syringe. My airway was so swollen that I couldn’t talk. And I was too exhausted from trying to get air in and out to really pay attention to what was going on around me. I was on the verge of being completely non-responsive. This was 8 months ago.
Then all of a sudden Epi kicked in. I could breathe once again. I relished those deep breaths, then opened my eyes and actually looked at the doctor next to me and smiled. She, quite obviously relieved to some extent asked me my name with which I responded correctly and the tension in the room lifted.
I was out of it apparently enough for her to be concerned about if I was still coherent by asking me if I know my own name. I was. But what I don’t think she, nor I nor anyone else who was part of the team that cared for me in the ER, ICU and hospital with 4 more rebound reactions ever expected or gave any thought to would be the after effects of nearly dying and not being able to get enough oxygen for I’m not sure how long.
For 3 weeks I was completely exhausted. So I didn’t think it strange that I was having more trouble remembering stuff. I just blamed it on being so exhausted and that my body was still recovering from it all. It’s completely normal for me to be exhausted for at least a week after anaphylaxis.
But I found myself struggling to get back on track with homework. I at first blamed it on being exhausted. But after a few more weeks when I was still forgetting things, including spelling simple words, I started to realize something just wasn’t the same as it had been before. I really noticed something was wrong though when I kept forgetting what I was talking about in the middle of a sentence. It wasn’t the same kind of thing where you’re talking about something and get sidetracked and forget what you were talking about.
I’ll be talking and AS I’m talking, I know what I’m about to say next and then it just dissolves. I find myself frustrated because it dissolves like sand. It’s really odd. I keep forgetting about key words I’m about to say that are relevant to the topic.
But also really annoying is when I’m talking about something then out of the blue it’s like my mind has just been wiped clean and I have NO clue what I was just talking about, but also NO clue I was just talking in the first place!
Equally frustrating is school. I used to be really good at writing papers. Now, it takes me 3-5 days to write an 8-10 page paper which I used to have no trouble writing and they feel really disjointed to me. I’ll write one part and then completely forget what I just wrote, so it’s a wonder I don’t accidentally write the same thing more than once! Yes, I proofread them. But even then after I just read a paragraph I’ll forget what I just read in that paragraph. One of my last papers the professor commented to me that I had been rather redundant. Oops. Reading and taking notes is also harder as it takes me longer to understand what I’m reading and I keep rereading because I completely forget what I just read.
Back at New Years I apparently set a few goals. Last night I found out in my journal I had set any goals. I was sure I hadn’t! Oops.
My best friend told me a few weeks ago that now she can make up stuff we’ve talked about because I can’t remember 1/2 of what we actually did talk about!!
The other day I met with my allergist to go over my action plan because it was really really confusing me. It turned out, what was making me so confused was that I had forgotten most of my action plan!! I had mentioned my memory issues briefly in the office and she didn’t think much of them besides that I should bring them up with my GP and that it could very well be due to a lack of oxygen during the reaction. But it wasn’t till that evening when she called to clarify something she realized that she realized I had completely forgotten the old plan that she realized what I meant by memory issues.
I also will be trying to say something and I just cannot figure out how to express it in words. Last week my mom asked me a question and I was trying to answer it. It was a simple answer. I just couldn’t find the words to reply. Finally she gave up and we just moved onto a different subject. But it drove me nuts that I couldn’t figure out how to explain something really simple. I used to not have this problem.
So, I scheduled an appointment with my GP. Who sent me to a neurologist. Who confirmed my allergists thoughts. Basically, I didn’t get enough oxygen to my brain (either there wasn’t enough oxygen in my blood or I didn’t get enough oxygen rich blood flow to my brain, aka anaphylactic shock, ie drop in blood pressure) which damaged my short term memory. It’s one of the first things in the brain that gets affected by a lack of oxygen. Combine this with the fact I have celiac and also am deficient in a few vitamins and minerals and you have me forgetting a lot more stuff than I used to.
The good news though, is I’m young. And with work to learn stuff and keep stimulating my brain along with sleep, exercise & good nutrition I should recover almost fully if not fully. So, I’ve got a tough road ahead. But I’m not giving up. I also graduated last weekend and I didn’t just graduate. I graduated with honors. It’s taken me a lot more work to keep up my grades this past year, but I did it.
But also, you know what? I think that more people deal with memory and processing issues after a severe reaction than admit it. I know one friend of mine is dealing with it too. But it seems to be that people think it’s not all that bad. Or that it’s all in their head or imagination. But it’s real. My neurologist told me that if you look on my MRI you won’t see the damage because its not big enough. But if you were to stick a microscope in my brain, you’ll find the damaged parts. They’re there. They’re real. And even though the damage isn’t really huge, it’s there and I can feel it’s effects every day.
But I’m not giving up. So, if you find yourself having memory issues after a reaction, it’s not in your imagination. Go see your doctor. It’s real.