BLE and Bacterial Meningitis

 The past two months have been challenging, and I thought maybe if I wrote it all down it would help me realize just how hard it has been, and how far along my recovery has come. I don't remember the first two days but according to my daughter this is how it went.

On Tuesday 10/4 she realized I hadn't been up, and that she hadn't seen me since getting back from taking the kids to school. Checking on me in my room it seemed that I was sound asleep. When I wasn't out for lunch she tried waking me up, and maybe I mumbled a response but it wasn't coherent. That afternoon when unable to wake me she said she was calling 911. That is the one thing I do remember, her face in sort of a halo of light saying 911. But I don't remember the ambulance arriving, the paramedics lifting me from my bed and carrying me out of the house, or them saying to my daughter that I was too hot, and probably my blood was infected.

She spent the next twelve hours in the emergency room while they ran test after test. Thank heavens I don't remember the spinal tap that finally revealed the meningitis. From there I was taken to ICU and they began treating me with broad spectrum antibiotics while testing for which bacteria was causing the infection. It turned out to be a very common one that had made it's way to my brain.

I remember waking up in ICU, my daughter by my side, and so began my week in hospital. Now that I was awake, and treatment was under way, they moved me upstairs to continue testing and treating me. Anyone who has had a hospital stay for any length of time knows it is anything but restful. Checking vitals at all times of the day and night, and for me there were breathing treatments, blood tests to monitor the infection, and the monitoring of my intravenous antibiotics. I was bedridden for days, and I learned later that I had argued about using what I saw later to be what looked like a large tampon to pee in. Instead they fitted me with a catheter. That is another memory that came back, being swabbed down in my nether region to prep for that. It took me a couple of days to be aware enough that I was tethered by this to the bed making it uncomfortable to turn over.

During this time I realized I couldn't hear very well, and that I was asking the nurses to repeat themselves and even holding my hand up to bend my ear forward to hear better. Gradually this became better, but has not recovered fully. Later,  a CT scan would show a mass behind my right mastoid bone, and a visit to the ear doctor would test my hearing at just below the lowest normal range. More about that later.

I think it was the third day they identified the bacteria and began treatment with a specific antibiotic. And it may have been around the same time they approved a clear liquid diet for me. I had been drinking water, knowing how important it was to stay hydrated, and it was lovely the day I was offered tea. I wish now that I had known at the time they had treated me with morphine as I was moaning and thrashing while unconscious. Or maybe what I wish is that they had a 'constipation protocol' in place for when they administer that type of drug knowing what is going to happen. It could have saved me a week of misery. But that would come later.

The first time I was offered food my immediate thought was, no sugar or flour, and I could only think of stories I had heard about how horrible hospital food was. As it turns out, the choices were so much better than expected. Fresh blueberries were my first real food, and so delicious. I didn't have much of an appetite and it was easy to stop eating when satisfied. There was some confusion with getting what I ordered, or it being moved in the nurses fridge when I wasn't hungry at 'meal times' and wanted to wait to eat later. But all in all my food was clean and I was able to keep my first two lines bright.  There were spinach omelets with cheese, and potatoes on the side. I always asked for blueberries, and one day after some mix-up the plain unsweetened yogurt showed up.  I think my favorite breakfast was a little container of cottage cheese and a fruit bowl.

I can't recall what day, maybe the 7th or 8th of October,  I wanted to get out of bed and go to the bathroom so they removed the catheter and I got on my feet.  That was humbling, using a walker to make it a few feet from the bed, but I was grateful to be up and about. And it was a day later the nurse started asking if I had had a bowel movement. THAT would have been a good time to know about the morphine and get ahead of that game. But I didn't, and I feel somewhat idiotic now that it didn't occur to me that having started eating solid food I should be eliminating waste.

I was strong enough by Friday that they started talking about releasing me over the weekend. My beautiful, generous, strong daughter took a class on how to continue my intravenous antibiotics at home so I could be discharged. If she hadn't, it would have been a nursing home, and I am grateful everyday for her compassion and steadfastness in being willing to do it. It was just a reminder course, she and her husband had treated their son at home for leukemia and were already familiar with the protocols, and so a mid-line port was inserted into my arm and on Sunday she drove me home in the late afternoon.

All in all it was a week I never want to repeat. And nor is the next one. I was so exhausted all the time, and just getting from my bed to the bathroom across the hall wore me out. Sometimes I even remained lying down while being given my antibiotics. Bless her heart, my daughter came in twice a day, usually about 9am and 9pm, to clear the line, administer the meds, and clear the line again. This after disinfecting the desk next to my bed and laying out the syringes and cleaning pads. It always felt so professional, and I was confident I was in good hands. I was looking forward to treatment being done, and so sure that I would start feeling better once the meds had cleared my system.  Wrong.

I 'continued to languish' (had to throw some fancy novel language in there) over the next week, always expecting to feel better but continuing to lie abed day after day. I remember it as just one continual pattern of sleeping, eating, and peeing. Because I still wasn't having bowel movements and all of a sudden that became of great concern. How does someone not go to the bathroom for two weeks?! It was then I found out about the morphine and about how much pain I had been in while unconscious. Which I find so strange. Anyway, after trying many OTC treatments for constipation we finally called the Dr., who said go to emergency. NO! I couldn't bear it, but I could find the strength to bear down and start some movement. After days of drinking awful stuff and taking stool softeners my body was finally ready to start releasing the waste. Thank heavens.

I should mention that my eating during that week was a little nuts. Breakfast was fruit and maybe some cream of wheat cereal, and I discovered that I couldn't stand the smell of bananas or peanut butter anymore. And while I enjoyed toast (sprouted whole grain from TJs) I no longer wanted cheese on top. I also became aware of how my senses were compromised; oranges tasted like licorice, I couldn't smell bacon cooking, and eating became a dance of little tastes.  Canned soups became lunches, and I would share a little of what the rest of the family was having for dinner.  There were a couple of times I had cravings that my daughter was happy to fulfill (filet of fish, how strange) and fudge popsicles relieved the ache in my mouth and throat for a couple of days. Oh yes, I forgot to mention that the last couple of days in the hospital I had canker sores start erupting on my upper lip. Over the course of my first week at home they spread to my lower lip, and both nostrils of my nose. I feel horrible about how scary I must have looked to my grandchildren, but I was isolating in my room most of the time. Stress is a nasty business, and I still have a couple of scars that haven't disappeared yet.

But despite the strong desire upon waking in hospital to eat clean, once home it was more about just getting calories in and trying not to disrupt the family with specific requests.

Back to the drama. While my second week home was dealing with constipation, the third was about frustration that I wasn't better. That week I was able to start watching television and must have seen every favorite I had. Streaming turned into my best friend, often falling asleep during a movie I could go back and pick it back up. So my routine that week was to nap after each meal, hit the bathroom, then watch some TV only to fall asleep again. I was finally strong enough to sit at my desk and google bacterial meningitis, where I read that recovery usually takes a week to ten days. What? Of course I later learned that normally it's children who get this, and that because of my age and health factors this would not be normal for me. 

Finally having a zoom meeting for a follow up with the Doctor he was able to assure me his mother had this and it took months before she recuperated.  If nothing else, it gave me a sense of normalcy, and I began to hope for a full recovery. I had appointments to have my mid-line port removed, my hearing checked, and a CT scan to see if my brain had changed since first being admitted. OH, I forgot, at some point getting out of bed I realized I couldn't lift my right foot. It just wouldn't listen to my brain! I stood up, and limped my way to the bathroom, dragging my foot along and holding on the the hallway walls and doors to support myself. I should say that the arthritis in my back had been quiet throughout my ordeal, not deviling me with pain and I hadn't even thought about it. I realized I had been lying down so long I had been putting very little weight on those arthritic joints. Maybe the foot problem was a side effect?  Back in bed and stretching out my foot the tingling disappeared. There was another occurrence in the middle of the night and I became worried. After a consult with the Dr. and him mentioning 'foot drop' I again went on a google search. I really must stop doing that. Anyway, that conversation resulted in the follow up CT scan, with the results being that I had NOT had a stroke and that my white matter was consistent with a person my age. I think it was at this point they noted that bacterial meningitis is an infection of the nervous system, and that it wasn't just my brain being affected.

On 10/31 I was able for the first time to log in to work, and discovered that an hour of thinking (accounting) really taxed my brain. The pressure would start building and it would be back to bed. I was able to start sitting up on the couch to help watch Cal while my daughter worked (we both work remotely) and my napping became less. And despite the hearing Dr. saying there was no liquid behind my eardrum, my ears continued to pop every day, and my hearing gradually became a little better. I had an appointment with the head and neck department, but the day of my appointment I woke up with vertigo that put me back in bed for a few days. So frustrating!

The last two weeks of November I realized I was gaining strength each day, and I finally believed that my hope of a full recovery could be real. I was able to work a couple of hours each day, make my own meals most of the time, and while I still rested lots I was no longer going straight back to bed in the mornings. Finally in December I drove to a Dr. appt. on my own, and then a few days later was able to do a school drop off. Unfortunately upon arriving home I left the car turned on after lowering the windows and when I went out for the school pick up my car was dead. Thank heavens the kids have good friends and I was able to borrow a car.

My poor car still sits in the driveway, unusable, but I can't seem to focus on that yet. In the meantime I can use my daughter's car to help out, and eventually I'll get around to replacing the battery. 

So, here I am, 68 days after being taken to hospital, and I am still recovering. I'm helping more with the kids, and doing more around the house. I have yet to reschedule my neck & head appt. to see what's going on with my hearing, but I think it continues to improve. I do get headaches, but they are fleeting and come less often. And my brain fog is mostly gone. I still need to rest after a couple of hours of computer work, but I am fortunate to have a flexible work schedule. Last week was the first I was able to work four hours each day - my normal part time hours- and each day I am grateful for my family, for the ability to rest when I need to, and that I can ask for help anytime I am too tired to pull my share of the house chores or cook or shop.

Speaking of shopping, I did drive to the store this past week, and get groceries. I even put everything away before collapsing exhausted on the couch. At the store my automaticity had set in and I came home with mostly BLE staples plus some other items for the family. It has greatly reduced my food chatter not being able to drive, and I realized that day arriving home that I hadn't even considered driving through anywhere or picking up a 'treat' at the store. At least that part of my brain isn't broken.

But now that I truly feel that I am on the way to a full recovery, I am dealing with the fallout from my change in taste and smell. Buttered toast calls me, and if there is no sprouted bread available I'll use the regular whole wheat. And if my granddaughter bakes cookies I'll have a couple. So I have not been bright past a couple of days here and there. I did have an epiphany at Thanksgiving, realizing I truly am a food addict, and it has been much on my mind since then.  I'm back to listening to the accountability calls, and logging in to the Facebook group each day, but I haven't been able to commit.

I started using my journal to write down food on 11/14, but not consistently, and I just keep listening to my part that says I'm still in recovery, and shouldn't stress about food. I know better, I know eating clean will only help my recovery. And I suppose that is why I am here today, writing this all out. I know what to do, and I want to do it, and I am not sure why I am not. So I am going to commit here to my habit stacks, knowing that my food will fall into place soon enough. I am determined that this Christmas will be Merry & Bright. Funny, the tiny whisper that negates that, but I will do parts work for that, because that is not the real me.

Whew, glad that's out. I know I missed a lot of details, and there will probably be more about this. But for now, it is way past breakfast, and I need to rest!