I’m getting used to what I’m able to handle with a compromised balance system. While I am better at listening to my body, I am still sometimes caught off guard by my new normal (like today). I had an epic day yesterday; I did laundry, then I went downtown to meet a friend. We had lunch, went shopping, then ventured to Granville Island. It was a great day spent with a great friend, but I overdid it, so I’m paying for it. I feel hungover. I’m moving more slowly because I’m extra wobbly, so I’m taking it easy today. I’ve already overtaxed my brain today by doing complicated tasks. No more heavy lifting for my brain today with this brain fog.
I used to get down when I felt this horrible. Yes, I’d rather I didn’t feel like crap, but this is part of what it’s like living with a balance disorder. I will rearrange my chores and to do list so I can tackle them at a later date, because this is my new normal.
It is the last day of 2015, so I feel I need to reflect back on how far I have come. This time last year, I did not venture more than a few blocks from my home. I was so ill from labyrinthitis that I could not stand or walk without assistance from my hiking poles. Those things were my best friends! Busy, and loud environments made me feel horrible, and I did not know if I would ever feel normal again. I did not leave North Vancouver for more than 4 months. My goals for 2015 were mostly related to my recovery from labyrinthitis. Here are the ones related to my recovery:
Take a bus to Park Royal
Go to the mall
Ride the SeaBus
Walk without assistance
See a movie in a theatre
Return to work
I am proud to say I accomplished them all, but they were not easy, and came with many tears. Anxiety was so prevalent with my illness; things I used to take for granted became very scary. When your balance is messed up, busy environments, loud noises, and moving vehicles seem scary. I had downloaded an audiobook, and an ebook on anxiety, and they helped me tackle my fears.
I work next to a mall called Park Royal in West Vancouver. Since my illness, I had not ventured there. About a month before I returned to work, my co-worker offered to meet me at the bus stop at the mall. She told me if I could not handle the entire bus ride, to get off the bus, and call her to pick me up. I made it, but I started to cry before I even got off the bus. Traveling to West Vancouver had become this big scary thing. My co-worker met me, hugged me (she is not a hugger, so that is how much I needed one), then we went for lunch. It was a huge step for me to get there.
After lunch, I went into the mall for the first time since my illness. It was January, so not when the mall was really busy. It was overwhelming, and I did not stay long, but I did it. Another item checked.
Then I went for a walk on the West Vancouver SeaWall; it was an epic day.
For tackling the SeaBus, I made plans for a friend to meet me on the other side, and I went for an acupuncture session before I attempted to go on the SeaBus. It was not an easy ride, as my head really did not enjoy it since I got a terrible headache, but I did it. So what if I cried when I got to the other side! My friend picked me up on the other side, and we went for a nice meal in a quiet place.
It was near the end of January when I suddenly decided to try leaving the house without my hiking poles. My vestibular physiotherapist had told me I needed to wean myself off them, and that thought was truly terrifying to me. One evening I decided to go out for a walk without them. I was so scared, but I was determined. I walked about 5 blocks, then walked home. After that, I would carry my poles with me (they are collapsable) as reassurance I could use them if I needed. I think it was a couple weeks before I was walking without even taking them with me. Go me!
I chose a non-action movie to see in a theatre as I had heard action movies had made fellow sufferers sick. I did have to close my eyes during some previews as they were too dizzying, but the movie was a success.
I started a very gradual return to work in February. About a week before my return, I planned a short visit to the office because it had become another huge fear since it had been so long since I had worked. I started to cry as I exited the elevator on my floor, and approached my office. I am glad I did that short visit to get over my fear of going back.
My return to work ended up being more challenging than I had anticipated since I discovered the fluorescent lights make me sick. Because of the damage to my balance system, my brain detects the cycling of the lights even though I do not see it with my eyes. I tried several things to try shielding myself from the effects of the lights, but the only effective remedy was replacing them with LEDs. I am so grateful to my boss for going through with it, as it was not cheap. There are LED tubes that fit into fluorescent light sockets, but they were not readily available in the sizes needed for my office (thanks to my friend in the lighting industry who put me in touch with a company that could order them for us). It was more than 4 months before the lights were replaced in my office; I do not even know how I survived working under the fluorescent lights that long. They gave me a headache, they made me dizzy, the nausea was horrible, but the worst symptom of all was the brain fog; I felt like I could not think under them. When they were finally replaced, I could start working up to a full day, and feeling like a productive member of society again.
I had a bit of a setback in another area recently; I had a lower back injury in 2000 that flared up after a fall (not related to my balance disorder). When my back went out just over a month ago, I popped some back pain pills, and thought I would be fine. Nope. My back refused to let me bend. I was in agonizing pain for quite some time, but I got through it with the help of many medical professionals, ice, swearing, and some prescription painkillers. These days I mostly use ice for pain relief, so that is an improvement. Sitting still causes pain, so on that note, I should finish this up so I am no longer sitting.
I am grateful to so many people for helping me along the way, and I am glad I found other people online who knew what I was going through. That is why I created this blog, so I could share my experience with others going through the horribleness that is labyrinthitis. It is truly the worst, and it can make you feel like you are crazy, but with hard work, and determination, you can recover. I feel like I am at about 90% after more than a year.
As I continued with my recovery, different symptoms would trade places as the worst offenders. My brain fog became so awful, I could not remember things from one moment to the next. For instance, if I put the kettle on to boil, I learned to set a timer to remind me after several times of wondering what the noise was after having forgotten I turned it on. It can be quite scary when your memory is affected to such a strong degree, especially when you used to identify as someone with an awesome memory. The way some people on the Facebook support group talked about brain fog was that our brains were working so hard at keeping us upright, they could not be bothered with little things like remembering what we did, or coming up with the correct word when speaking. I remember one thread on the group where people were sharing examples of things they did because of their brain fog; one person said they put their purse in the freezer. I never put anything in the freezer that did not belong there, but I would consistently use the wrong words when speaking, but would realize right after I had said them that the word was wrong. An example was using groceries instead of garbage (I would say I have to take out the groceries), or using other words that started with the same letter. I also had a very hard time finding my words when speaking; this made conversations very difficult for me. It was very odd, but eventually I got used to it and stopped being so hard on myself. It did freak me out in the beginning, so it took time for me to accept this as part of the illness, and not to be too worried about it.
I also had a very hard time concentrating. There was no way I could do any complicated tasks (like my job). It was the beginning of October 2014 when my GP suggested I may have to go on short-term disability. The idea of not working for an undetermined amount of time scared me for several reasons. Firstly, I had never been this sick for so long, and I was starting to worry I would never be my old self again. Secondly, I support myself, and I was concerned I would run out of savings before I was able to work again. I used up all my sick days by mid-October, so I started the process to apply for EI Sickness benefits. Part of the process was to get a note from your doctor. My GP has been supportive during the whole process, and she kept telling me it was not my fault that I got sick, and that everyone is different, and it lasts as long as it lasts. She knew I prided myself on being a good employee, so she was aware my illness really took a dig at my self-worth.
In the beginning of October I suddenly recalled owning hiking poles, so I started using them to get around while out and about. Those poles helped to steady me while I walked, and took away the fear of falling. Most of my days consisted of some sort of medical appointment, and doing my vestibular rehabilitation therapy (VRT) exercises. Once a week I had my groceries delivered. I’m so grateful that one of my local grocery stores started home delivery just a short while before I became ill. My boss told my co-worker she could help me out during office hours, so several times she came over to bring me things I could not get on my own, or to take me to do errands I could not easily do myself. One of my friends lives a few blocks from me, and would drop things off for me, including yummy turkey dinner in October for Canadian Thanksgiving. I’m so grateful I had such a supportive network of people around me during one of the most difficult times in my life.