(cm journal entry 5)
This is something I have not spoken about on my socials (I mentioned it very briefly in one blog post) because in all honesty I've been in denial about the entire thing since I was diagnosed. I'm condensing this already very long post. Around 1.5 years ago I was with my fiancé Cody in Melbourne attending a supernatural convention #spnfamily #alwayskeepfighting. During our time there I developed some very strange symptoms. It started whenever I looked down, it seemed as if the floor was moving slightly. We had just got off a flight and were staying in a very high apartment with a crazy high and fast lift (my ears did have trouble with the pressure) so I shrugged it off thinking it was just that. My left ear had popped going in the lift and it did hurt a lot more than usual (again I thought nothing of it). However each day my symptoms worsened. I continued to ask cody "does it seem like the floor is moving? of course he said "no" and looked slightly confused. I began to feel hot and nauseous. The dizzy/imbalanced feeling got worse. I did not having spinning vertigo but by now the floor was sliding left, then sliding right, coming up at me when I moved. Closing my eyes in the shower was impossible (that's when I felt like I was spinning). I could still walk and function with all these strange symptoms going on (I just needed a few more sitting down breaks) so I pushed through our Melbourne trip. I wanted to have a good time.
However by the time we were at the airport to fly home I was really bad. I tried to remain calm thinking "I might just be getting sick"...it will pass.
That night at home I experienced a severe vertigo attack, I was confused and disorientated. Cody rushed me to emergency and thankfully all tests were clear. It must just be a virus they said. Rest up and if it doesn't go away go and see your Gp.
So relieved it wasn't anything terrible I went home to rest. However the symptoms just became even more scarier and more confusing. The next day I woke up and the floor felt like a trampoline. Each step felt like I was walking on a giant bed of marshmallow. The spinning had stopped but I wasn't balanced. The floor still moved slightly, I couldn't focus my eyes, I felt sick, my head hurt, things moved that shouldn't be moving. Eg. If I looked at a painting on the wall it would move slightly left and then back to its originally position (now I know this is called nystagmus) but at the time I was thinking "ok, there is something really wrong! They must have missed something!".
To others I looked fine, sounded fine. You could tell my balance was off but other then that I seemed normal to everyone else. People would say "It's just vertigo, I've had it before, it will go away". At the time I thought "sure, i've had vertigo before and it went away....this has been constant for 2 weeks now!".
My normal GP was on maternity leave so I had to go see a new doctor. They had no idea. I went to another doctor. "something to do with your ears, but i'm not sure"...went to another doctor....."you need your ear cleaned out". Did that and it was the worst thing I could have done..only irritated everything further!
So I just put up with symptoms until my doctor returned back to work. By this point my anxiety was really really bad. Why can't anyone help me?! The floor literally feels like a marshmallow...this is not normal people!!!!
*This all started happening just after I launched my first range of collars and leads for cmdesigns. Perfect timing right*
Finally my doc was back and I went to see her...by this point it was a month since symptoms started. Scared and confused she calmed me down after doing some tests and said "I'm pretty sure you have Vestibular Neuritis" ....Say what?!
Vestibular Neuritis (VN) is inflammation of the balance nerve that connects the inner ear to the brain. When someone has Labrynthitis it affects the hearing nerve from the ear to the brain. Some people get both. Thank goodness my hearing was fine, it was just my balance. What causes this? It is mostly due to a viral infection such as colds, the flu or respiratory infections. Ear structures become inflamed resulting in a disruption of balance signals to the brain. Most of the time when the body fights the virus off and things settle down everything goes back to normal. However in some people the nerve can be permanently damaged. VN can also be caused by injury such as severe pressure changes, concussions and knocks to the head/ear area.
I was instructed to wait another 2 weeks as recovery normally takes 6 weeks..it had been 4 weeks. With hope I would still return to normal in a couple of weeks I waited it out. Still no difference. From the outside I looked fine but I was living in a distorted reality. I still felt off balance, my eyes were so fatigued, I had headaches. I couldn't read a book because it looked like the words were bouncing on the page. Phones and computer screens made me want to vomit. I only left the house to go to work and pushing through all the symptoms was exhausting and terrifying! Looking back I have no idea how I did this.
At this point I was sent for MRI's to rule out anything more sinister (I thank God everything was clear) then I was sent to a Vestibular Testing Place to determine exactly where my imbalance was coming from and if my nerve had been damaged.
The results showed I did have permanent damage to the balance nerve in my left ear.
This was good and bad news. The good news was that I finally knew I wasn't going crazy and had a diagnosis. The bad news was that the damage is 'irreversible'. My body wasn't going to be able to fix the nerve itself and the treatment was Vestibular Rehab Therapy (VRT). This helps train the brain to read the mixed signals from the ears..eventually (in most cases) the brain can compensate and symptoms either go away or are greatly reduced. In my case they weren't sure if it was a virus that damaged my inner or pressure due to the malfunction of my euchstatian tubes not being able to relieve the pressure in the plane and lift whilst in Melbourne. I also have a history of ear infections as a child and was told this made me susceptible to ear problems later in life.
This my friends is the Vestibular System (balance system). The communication between the eyes, ears and body to the brain. Everyday it just does it's job without us giving any thought to it at all until something malfunctions.
Equal balance signals from both ears = happy brain. When one ear is damaged the brain receives uneven signals. This confuses the brain and it tries to work out what's going creating all the horrible and scary symptoms.
Off I went to to VRT and just tried to continue with normal life. I kept working on the business and going to my part-time job. I down played how I felt to friends and family just saying "yeah I feel a bit off balance but it's fine". It was not fine. It's hard to describe an invisible illness or injury (I have a deeper understanding and sympathy of Cody's PTSD now and everyone living with an invisible illness/injury). I just wanted to get better...this vn was really getting in the way of me pursuing my daydreams..my business!!! so I guess not telling people about it was a way of pretending it wasn't there.
For 1.5 years I battled with the symptoms. The first 6 months were the absolute worst. I actually thought this was going to be life now and I wasn't sure I could do it. Forever living in a weird imbalance land, unable to drive, read, unable to look at my phone or computer for more than 30 seconds without needing a break, going out into crowds or doing things with friends was impossible. Simply going to the supermarket was a nightmare with all the noise, colour and movement. I started developing a sleeping problem because every time I closed my eyes it felt like I was a buoy being tossed around in the water. Sounds crazy but that's exactly what it feels like.
I powered on..just doing my thing with the belief that it would get better. My symptoms slowly started to improve after the 6 month mark.Thank you! What I hadn't addressed was the anxiety and extra stress this was placing on me as well as working 2 jobs and keeping up with other commitments. Symptoms gradually subsided and by Christmas last year 2018 I was pretty good vn wise. I said to Cody "I feel like i'm really getting back to normal now" I was 95% better symptoms only flaring up occasionally. I was so happy. I really was finally getting better. I hated this VN it absolutely horrible and made the year so so difficult. Although I was addressing fixing my symptoms I didn't address the extra stress and anxiety I had developed in dealing with all this. I just had to make it to the Christmas Holidays and then I could relax, reset and start the new year Fresh. Now that I was feeling better I had plans to book an appointment with a Physchologist to help get my anxiety under control and learn to better manage symptoms when they occasionally flared up.
But just hold it right there. The universe had other plans and knew I hadn't learnt my lesson just yet! Just as I relaxed after the year and was feeling great I got a virus (not surprising due to all the stress). "It's ok" I thought. I'll get over this and be back on track soon. The virus to my horror turned into an ear and throat infection and I ended up at emergency on New Years day 2019 and was given antibiotics. At this point my balance was still fine but the next morning ALL my vestibular neuritis symptoms came back!!! ALL of them! It felt like I was back exactly at square one 1.5 years ago.
I broke. Totally and utterly broke down. I couldn't believe this was happening! All my hard work to recover and here I was back at the very start. I cried and cried and cried. Cody comforting me and Castiel never leaving my side.
I tried to remain calm to give my body the best chance to fight the infection. It didn't work. Panic set in..absolute terror that I was going to face another year of recovery. My ears were inflamed,my vestibular system confused and my nervous system in overdrive. I couldn't calm down, I needed help. Back to emergency at 12am explaining everything to the doctor. He was so understanding. He gave me prednisone and antihistamine to stop the inflammation in my ears and valium to calm my nervous system and help me sleep (I was so stressed I had an irregular heartbeat). Oh did I need Valium! Thank You Valium! (I'm not taking it now, but I did for a couple of days to help my body reset.) Also note Valium is definitely not a long term medication.
It's now been 4 weeks since I got the infection and had a flare up of symptoms. With VN our brain can de-compensate which basically means it forgets how to read the imbalance of signals. This can be caused by stress, travel, common colds, the flu and sinus infections. I did not know this, but now I do! Blood tests showed very high levels of inflammation in my body due the infection which of course cause such the dramatic flare up of symptoms. The ironic thing was I had booked a holiday with my Mum and Sister to Melbourne to attend the Australian Open. I finally felt well enough to do this and was excited. How strange that this had all originally started in Melbourne and then I had a huge flare up when I was meant to go again. As I said the universe making sure I really got the message. Obviously with my symptoms so bad I couldn't go, but had plenty of rest time to watch it on tv.
Up until this point I actually refused to acknowledge my condition was permanent. Can you recover 100%? Absolutely yes. I've read and watched stories of people who have. It just takes time, treatment and acknowledging you need to do things differently and take things slowly. Of course I didn't do this. I was treating it like a broken arm...like it should be fixed by now and back to normal functioning! I hadn't been kind enough to my body and my mind. I hadn't given it the nourishment it needed and time to heal. Just adding in more stress and trying to power through. I had realised this by Christmas 2018 and was going to make changes. As I mentioned the universe really making sure I got the message.
I will recover from this. Whilst I know my symptoms can flare up at any time I will get to a point where I don't even think about it and if it does flare up I will know how to handle it. I have surrendered to this not in a way that I don't think I will improve anymore but more of an acceptance that I need to do things differently, approach it from a more holistic point of view.
I am still working on creating a life I love and I'm still pursuing my ultimate daydream @catherinemarydesigns. That won't change. It just means I have to be patient with my mind and body and do things at a slower pace than I would like to. This is the reason why I hadn't launched many new products/designs the past year. According to research when the brain has a set back due to de-compensation it normally recovers a lot quicker than the first time so i'm just resting and being patient with the healing journey. Trying to be patient anyway.
I decided to share this because I no longer see it has a burden (even though it gets me down on days) but an opportunity to make me stronger. I am not writing this for sympathy. I feel incredibly privileged and blessed with my life. I know there are others out there dealing with much worse. There have been some people who couldn't even walk when they had VN and have even worse damage to the nerve than I do. I consider myself extremely lucky and I apologise and give thanks to my body for doing it's best to heal when I wasn't being kind to it at all. They also say that when you write things down amazing things happen and putting things out into the world releases the power it has over you.
I may set up a separate social page or perhaps even a blog dedicated to recovering from vestibular neuritis. Even if one person suffering from the same thing stumbles across it and makes them feel not so alone then it will be worth it.
I have been writing this post over the last week ( I still need regular breaks as it is hard to concentrate). My current status is: Still feel like i'm on a boat but the seas have calmed down a lot. I have some new treatment plans in place and I'm looking forward to 2019 being a year of healing and of course getting creative again with my designs.
For anyone else suffering from a vestibular disorder please stay strong. There are so many stories of people overcoming them and I am going to one of those people. For everyone going through tough times at the moment. Stop pushing the problem away. It does not work. Accept it and accept you may need some help dealing with it. That is perfectly ok. The body can heal both mentally and physically we just have to give it the tools to do so and self compassion is a great place to start.
Much love,
Cmx
p.s. also to everyone who has helped me over the last 4 weeks it is appreciated so much (you know who you are). To Cody for being there for me and literally getting me through this illness and most epic epic meltdown!......also for taking a photo of me at my most vulnerable out of it on meds. True love right ;)
...and of course our Castiel for always making everything better.
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