For the past few weeks, I've hinted in my Instagram and Facebook posts that I've been struggling with my health. At the beginning of all this, while I was really quite ill, we thought (myself, my family, the doctors) that it would be a simple round of medication, rest, self care and I would be back on my feet within a couple of weeks. But that didn't happen and now it's time to talk a little bit about what's going on because it has deeply affected all aspects of our life and has changed me in ways that may not always be easy to hide, even from behind a computer screen.
So at 32 years old, after letting myself get run down and really neglecting to take care of my body while we tackled this recent transfer across the country, my immune system crashed and after a few weeks of feeling really unwell, I realized that I had Shingles. Ugh. Yuck. Just gross. I went to the ER and got antivirals immediately and the doctor seemed to think we caught it quickly and for the first few days of antivirals, it seemed that we had because the rash cleared up super fast and it seemed like I was getting better.
On day four of the antivirals, however, I woke up not feeling myself at all. I had so much pain and pressure in my head that I wished someone could cut off the top of my skull to give me relief. And I was confused. Everything around me was spinning. Or else I felt like I was spinning. I was unsteady. I couldn't focus on anything. I shrugged it off, thinking I was probably just having a reaction to the medications and I only had to take them for another 3 days so I would suck it up and soldier on. So for the next three days the symptoms got worse until I no longer had clear moments. It was constant severe vertigo, pain and pressure from the time I got up until I went to bed and even when I woke up throughout the night. I finished the medication and waited for the symptoms to go away. But three days later, it was still getting worse, not better. So back to the hospital again.
After putting me through a mass of physical and cognitive tests in consultation with a neurologist, my doctor informed me that I was suffering from a complication that sometimes occurs in Shingles patients, called Ramsay Hunt Syndrome. Basically, the Shingles infection moved into my facial nerves along my ear canal, my jaw and also behind my eyes. Again, the doctors were hopeful that another round of medication (steroids this time) would bring the symptoms to a halt. Fast forward through a week of steroids and unfortunately, the treatment wasn't successful. The symptoms continued to get worse.
Back to the doctor again. More consultation with neurology. And the conclusion is that it is uncertain whether or not I will recover from RHS or whether this will be my new normal. An MRI might be able to tell the doctors more about possible extent of nerve damage to provide a better prognosis, but unfortunately I can't have an MRI because of previous medical history.
So here we are. Overnight, through a fluke infection that went awry, our lives changed dramatically. It may be permanent, or I could wake up tomorrow morning and feel normal again. I spent several days waking up in the morning and lying in bed hoping that I would stand up and feel steady and clear. And suffering a crushing disappointment when it didn't happen. I cried. I was angry, depressed, scared and felt useless. And I just about drove my poor husband bat shit crazy dwelling on the what ifs.
So we have made a decision as a family that we are going to treat this as if it's not going to go away. Accept this as my new normal. And that doesn't mean we're giving up. It just means that we aren't willing to become a family that says "we'll wait to do that when mommy feels better."
So we are adapting and adjusting. We are rearranging our routines and our habits to suit my new normal.
Let me explain a little bit about what my new normal looks like.
- For starters, and perhaps the most devastating and limiting effect of this is that I can no longer drive. For those of you who have known me my whole life and know the fears I had to overcome to get my license 4 years ago, you will probably be able to imagine how much it hurts to have that taken away from me. My car is now parked in the garage where I don't have to walk past it feeling sad that I can't drive our kids to the park. Errands have to wait until my husband is available to run them, or drive me around town. Super frustrating for someone as independent as I am. I hate it. But I can't walk a straight line 90% of the time so it's definitely not safe for me to drive, at least not right now.
- Severe vertigo - while at home, dealing with the dizziness and constant spinning, off balance sensation of vertigo is manageable. There are lots of walls, furniture is close together, lots of visual cues available for me to judge my distances and keep myself from falling. Going out in public is a different story. There is nothing to hold onto most of the time and my eyes have become very photosensitive so being out in the sunlight causes the vertigo to get extremely overwhelming. I have to make sure I don't leave the house without sunglasses on and usually don't stray far anymore because physical activity seems to make the pressure, pain and vertigo worse. I walk around the block with the little one in the stroller when I'm feeling stir crazy - the stroller gives me something to keep myself steady and also keeps her safe and close to me, because I can't be certain that I would be physically able to run to grab her if she was in danger. I get exhausted just from running a few small errands because it takes every bit of my concentration to stay on my feet. But I'm going to keep doing it anyway. Because I'm just stubborn like that.
- Pain - is constant. My head feels like it is full to the point of bursting open. My ears and my eyes constantly hurt. The more I am active, the worse the pain becomes. I have a very high pain threshold from my many, many previous injuries but this pain actually tops having nearly every bone in my body broken all at the same time. I take 1/4 of the dosage of medication that has been prescribed for the nerve pain at bedtime because it makes me drowsy and I have three little kids to take care of during the day. So when I say that I have a bad headache, I mean I have a really bad headache. I would rather have my femur crushed into 4 different pieces again any day of the week.
- And... most scary of all this, is the fact that I am experiencing cognitive difficulties. When I wake up the morning, my mind feels relatively fresh and I find that I am able to think pretty clearly. However, as the day progresses and my body gets tired and the struggle of constantly having to be actively paying attention to balancing my body and staying on my feet takes its toll, I begin to suffer from focus and recall problems. By the time most evenings roll around, my ability to function cognitively resembles that of a patient in the beginning stages of dementia. As a person who has a very public life through my Saltons Cove Studio social media accounts, this is something that I fear will become noticeable and a large part of the reason I'm writing this post. These issues may or may not get worse and it's important for me that if I start to make mistakes when writing blog, instagram or facebook posts, my followers are aware that I haven't become lazy or decided I don't care about the little details... that I'm still giving it my very best. I hope that you'll be able to have patience with me. And for goodness sake, if you ever see me post a piece of artwork that has a jumbled up quote or something that doesn't make an ounce of sense, tell me. Seriously, shout it at me from the mountain top.
So sometimes I may use a word that doesn't make any sense. We are finding that it's usually a word that sounds similar to the one I wanted to use, but for some reason my brain chooses the wrong one. Like when I asked my husband if he'd found his lost kids last week when he'd misplaced his keys. Or when I told our oldest son one morning that I had to take a bag of ketchup out to the curb. He questioned me and I really didn't get what the issue was. He had to get the bottle of ketchup out of the fridge, point to it telling me it was ketchup. And then point to the bag of garbage I was holding and tell me it was garbage before I was able to realize my mistake.
Sometimes I may not be as productive as I normally am. It is nearly impossible for me to multitask. Me, a person who normally juggles 50 balls in the air and rarely drops a single one... now I find myself fighting to keep just one in the air at a time. A couple days ago I had to ask my mom to stop talking to me on the phone for a few minutes because I was making a casserole and couldn't concentrate on how to put it together and listen to her at the same time.
Sometimes I'm going to need reminders. Possibly many reminders. Feel free to nag me. I would love it. I've put a system in place to ensure that I have reminders all around me that there is stuff that needs to be done, but I do a lot of walking into a room and then not knowing why I went there. I mean a person with healthy thought processes does this as well on occasion. But normally walks out, remembers what they went for and goes back in and does it. I do that 20 times and never figure it out. And then later when my kid has no clean shorts for school, I finally realize the reason I made 20 trips to the laundry area that ended in me wandering around confused and getting frustrated and giving up.
Sometimes, if you visit me, you might see me doing things that just seem a little bit off. Like opening the door to the fridge when the microwave beeps. You might notice that during the day, my house is a mess. I've decided that if I only have part of my day to be productive and thinking half clearly and feeling half good, then I'm not wasting it cleaning. That good time is for the things that make me and my family happy. The mindless tasks like loading the dishwasher and sweeping the floor can wait until the evening when my brain feels like scrambled eggs and can't really handle anything more complicated.
So this is the new me. This is as brutally honest as I can be about how this whole ordeal has upset our life. I have good days and bad days. Yesterday was a good day. I felt clear and well for about 3 hours and I made the most of it. I danced with the kids for two hours straight and made my husband one of his favorite meals for dinner. Today is not such a great day. I woke up with my brain feeling like it couldn't make a single thought connection and struggled to get the kids a simple breakfast.
But despite all these challenges I'm facing, I am still all the best parts of the old me. I am still a person whose heart is so full of love it overflows. My family and friends still come before anything else, even if I can't remember their birthdays or phone numbers these days. My brain still whirls with inspiration and creativity and art has become therapy more than ever. I am still fiercely independent. And I am strong. I will not be reduced to waiting, hoping and wishing for better circumstances. These are my circumstances. And that is okay. My life is still beautiful and I am going to be just fine.