I’m actually in the hospital right now. I use to loathe hospitals—the smell, the look the seats…but I’ve come to love them. I’m oddly just as comfortable here as I am at my house. Yep, I know that sounds strange. But listen, it’s really not that bad. They have these super awesome blankets that they microwave (or at least that’s what I imagine they do, because they always come out super warm), they have these cool socks with the grippy things that they LET YOU TAKE HOME (I have dozens), AND you get this cool phone with your own personal assistant for the day. Ok, it’s not a personal assistant, it’s a nurse or a murse. And they’re there to be your best friend, and it’s absolutely fabulous—they are going to be genuinely some of the best people you will ever meet, if you treat them like humans.
Oh I should probably mention that I’m not the one who is ‘in’ the hospital right now. HA! It’s my mom. She’s having surgery on her eye or arm or something like that. But back to me. 😉 (JK I’m a nice daughter blah blah blah but this is my blog whine whine and I don’t want to get off track and forget what I’m talking about. Wait what was my original point? See. That’s what I’m talking about.)
Ok. so I think I remember the point I was trying to make. I’m sitting here with my hospital to-go kit (fleece blanket, computer cord, headphones, laptop, water bottle, back-up water bottle, phone charger, hand sanitizer) and I can’t remember the last time I’ve been to a hospital and have not been the patient. In fact I’m here, and I keep thinking they are about to call my name. The last time I was in the hospital I was getting an MRI and an MRI with contrast. The time before that I was getting a JVC test to make sure I didn’t have a deadly brain infection that is a side effect of my MS treatments (you normal healthy humans carry this deadly virus and are the ones endangering my poor, immune-less defense-less body and brain…but I digress). The time before that I was here for some blood and bruising stuff. People say they bruise like a peach…HA, they have no idea.
The time before that I had a migraine for 3 days and my legs felt like they were burning as they often do, but this time I caved in and couldn’t stand it…so I went in and got a shot of some kind of this or that medicine. And before that…well you get the picture. None of these things were ’emergencies’ mind you. My life was not in immediate danger…in fact I drove myself in most instances. It’s just that I’m a special case. With MS, everyday ‘sicknesses’ have to be taken very seriously. I don’t really go to a ‘normal doctor’—the hospital is my ‘normal doctor’. If I go to my ‘normal doctor’ with a fever she will immediately send me to the ER, for fear that my body is shutting down, or that there is a bigger problem—because it just may be that. She can’t just ‘let it go’. Now that I know my disease more, I know certain triggers, I know my limits, and I can predict and therefore know when something is going wrong. Well, as much as you can with this tricksy disease.
The things I can’t predict are when my MS is going to make me look like a b****. Sometimes it’s really embarrassing. My most recent method of coping with this is not caring, which furthers this seemingly ‘b****-y’ behavior. But it’s that or beating myself up or doing the “I’m-so-sorry-I-have-a-chronic-illness-that-forces-me-to-forget-really-random-little-things-it’s-not-you-it’s-me”. Maybe “Hi I’m having a mini-stroke and my brain is completely spacing out right now, but don’t worry it only lasts a few seconds to a minute, I’ll be back to normal in not time”, will work.
Sometimes my MS accidental b****. incidents are funny. Most recently: I met some friends at a bar. And those friends introduced me to some of their friends. And we all introduced ourselves and talked and such—fun times. At one point I excused myself and went to the restroom. I came out of the restroom and saw a girl that looked familiar, and I could tell she recognized me. Oof. I thought in my head. Another one. I had no clue who she was. Where had I seen her before? I swear I knew her. Should I go all out and pretend I remember her, should I confess I have no clue, maybe I should just walk away. I went with the “Hey girl it’s so good to see you, how are you!” (I also decided hugging her was a good idea) She said “I just met you. Outside. We’ve been talking about our kids all night. Ava? You worked with my husband” OOPSIE DAISY>> (I actually said “oopsie daisy” out loud. Which lately I have a problem saying my thoughts out loud, but that pseudo-tourettes syndrome symptom of mine deserves its own post). You may think this has nothing to do with MS, and it does and doesn’t.
Everyone forgets names. And people. Everyone has varying degrees of face-name(person?) recall issues (even though I freaked and completely-ish blocked out the fact that I ‘knew/met’ this person at all). But with situations like that I get so self conscious (how do you spell that word?) with my memory issues that I freak out and make awful decisions as exhibited above. It’s not like in social situations people with MS can go around writing down people’s names as we meet them and a ‘fun fact’ to remember them by—as they suggest on the MS website. Actually, that might be fun. I might try that.
Update: The nurse just took me to the room where my mom is staying until she wakes up. I am NOT cut out for this. I had to carry my purse and her purse and her jacket and her change of clothes and my hospital to-go kit and my blanket all the way back there…and SHE has on the cool grippy socks and all the warm microwaveable blankets. I honest to god almost asked the nurse if she could microwave my blanket. Does my blanket need microwaving? No. That’s not the point leave me alone, don’t make fun of me.
It’s fun to be ‘fun’ and joke with some of my symptoms but the truth is has taken a lot of adjusting, a lot of tears, a lot of support—a lot of time to get to this point where I can be so light hearted about my disease. Sometimes I’m too good at it. My sister who is convinced that sometimes I have this (honest to god real disease caused by MS neurological damage) problem where at times, due to brain damage, the patient is unable to process the sadness/upsetting part of things. Well, I have my breakdowns. Bad things keep happening, and will keep happening. But somehow, and more importantly I rise back up each time. And I just keep getting stronger. And I somehow just keep smiling. But man, sometimes I could use a break. And a hug. And some rosé.