I’m new here!
Hi, my name is ladyjanetnt. I'm looking for tips for living with a vestibular disorder.
Normally when my husband daughter go out on the weekend to do something fun that I don't feel like I could do I don't mind. I'm introvert and I like to spend time alone. But today as they left to go sledding I just feel lonely.
I ordered myself some fancy pears last week. I'm housebound and in great amounts of pain. I've been having trouble getting through each day...sometimes even getting through the next hour is tough. I'd forgotten I ordered these and today they arrived with this message from myself to remind me how strong I am.
It's important sometimes to be our own cheerleader. Even if we have amazing, supportive people around us, they aren't experts in our struggle. The person most intimately familiar with our struggle, and thus able to support us best, is ourself. So this week I wasy own best friend and support. Man did I cheer myself up!
I’m going to assume that there’s a chance that you’re reading this post because you too are coping with a vestibular dysfunction/disorder. Maybe it’s #VestibularNeuritis, vestibular migraines, cervicogenic dizziness, persistent postural-perceptual dizziness (PPPD), vertigo, dizziness, derealization… or maybe you’re just struggling with symptoms and you don’t have a clear diagnosis, but you’ve got ideas based on your own research. Congrats, me too. Regardless of what lead you here, I think these tips can help anyone going through a chronic health thing.
Halloween 2016 was a normal day that became the day that changed my life. We all have those life-changing days…but when it comes to a vestibular dysfunction, I think many of us can pinpoint the day, and probably even the time, that everything changed. And there are BIG feelings associated with those moments.
I went into survival mode for months…and months. Twenty-one months later and I still have survival-mode moments/hours/days. I recently was hit with an episode on vacation. I never feel “normal” but I go through periods of feeling worse and it always starts with a moment. I was in the Adirondacks at lunch looking out over the gorgeous lake and BAM: derealization set in, dizziness, I felt the out-of-body experience, my eyes stopped focusing as well, and my #Anxiety took off. The night before I had pain on one side of my face and I woke up and could hardly turn my neck to the left. You can be in the most beautiful place with loved ones and this vestibular stuff does not give a damn. I get it. It’s awful and horrifying, and I understand your frustration.
If someone had told me 21 months ago that I would still be dealing with vestibular symptoms on a daily basis, I would have told them f*** no. No way, I can’t. It’s awful, how could I? But here I am doing just that. And I’m leading a happy life. Not without its challenges, but I’m grateful for it all at this point. It’s been a journey of really getting to know myself. It’s been finding happiness in dark moments because it certainly exists.
I’ve seen many doctors, had many tests, explored both western medicine and more holistic approaches and learned a lot. And I’m still learning constantly. I believe that I had vestibular neuritis, which triggered vestibular migraines, probably with some other underlying things at play.
I’m going to share some of the things that get me through and have helped me find my way back to me, to happiness, and to truly enjoying life with a vestibular disorder.
ADVOCATE FOR YOURSELF
When I was first hit with all of this, I went to my general practitioner and genuinely thought she would know what was wrong with me and help me. Over the first week of spending hours in the office, I quickly realized this was not the case. I was going to have to do a lot of my own research and advocate for myself to get into specialists, obtain further testing, and I was certainly going to have to make it known that I wasn’t going anywhere. Some of the things that I heard from various doctors honestly makes me laugh at this point. Not because it was funny, but because it’s absolutely ridiculous some of the suggestions I was offered. You know your body and what your symptoms feel like. Remember that. I’ve been to two ENTs, neurologists, several general practitioners, physical therapist, ob-gyn, holistic doctor, chiropractor…and honestly they all have something to offer. Often not what I wanted to hear, but it’s all a step. As I’ve learned more and talked to more and more people (thank you, Facebook support groups), I now go into doctors’ offices with questions and what I want. It’s a frustrating process, but keep in mind this is your body, your life, and your livelihood, and you deserve the best. So keep pushing for the care you want and deserve. Of course, being polite and kind gets you further.
BUILD YOUR CONFIDENCE
I’m going to give you a bit of tough love now, ok? You can do this regardless of what you think. What you think will not define how you get through this. Your actions will define everything. Any thought of “I can’t do this” needs to be smashed. That feeling is going to creep back daily. For me, it was moment to moment in the early months, and when I’m in a bad episode, I’m right back there fighting to stay grounded. The thing is after I had made it through 365 days (for some reason that one year marker meant something to me), it just really sunk it. I’ve made it this far. I’ve shown up for my family, my kids, my job each day regardless of what I *thought* I could do. That’s called confidence, friends. Give yourself a huge pat on the back for showing up. People in your life probably will not understand this disorder, and how could they? I could never understand this until I was living it. Cut them some slack and realize that you can be PROUD of yourself for each day, each minute, each hour that you push through. And eventually, you’ll build confidence and really start to believe you can do this regardless of how you feel.
CHANGE YOUR PERSPECTIVE
Let’s talk about what I think is the biggest mountain you’ll climb: perspective. This is your attitude towards your vestibular stuff. This is how you talk about it. This is how you think about it. This is how you let it define you. And this mountain is really big and just when you think you’ve gotten to the top, there will be another stretch (and maybe a long one). That’s ok. Take a big breath, chug some water, and keep climbing. Do you see my point? Your perspective is going to play a really big role here, so take a moment before you land on it.
I’ve also found that being more honest with myself and with the people in my life about what I’m going through has made a world of difference (for me). They may not fully get it, but at least I’m honest. There are times when my health has to come first and if there’s an event or something else happening in my life that is going to cause more stress than it’s worth, I don’t participate. It’s that simple. I no longer apologize for what I’m going through. It is a part of me, but it’s not all of me.
FIND HAPPINESS (WITH THIS CONDITION)
Finding happiness with a vestibular disorder is really hard at times. I would think things like, “I can’t quite “see” right, the ground underneath me feels like it’s moving, I’m disconnected from the body I’m standing in, and you want me to be happy?” Remember, this is my internal dialogue. And then I’d respond to myself, “Yeah, figure it out…it’s still possible”. And so I started searching. It requires finding happiness and pure JOY in the small things, every day things that someone else might not find happiness in. Stop the comparison game. The first time that I put away laundry and I didn’t feel my body swaying as I bent up and down, that’s happiness. The first time I didn’t think about my disorder for 5 minutes, crazy happiness. The first time I realized that this disorder is going to make me a better person, I held onto that feeling with all my might.
These days I’m running again, and faster than before having a vestibular disorder. I’m stronger now too. About a year into this condtion, I started doing yoga + meditation a few time each week and it’s been such a game changer for both my physical and #MentalHealth. When I laugh with my boys, I feel it in my soul because it feels so damn good to smile and laugh so hard it brings tears to my eyes. There are also times that I cry and I realize that releasing those emotions is just as beneficial to my overall happiness.
Everything you go through, grows you.
Big sigh. The Holidays are upon us again. This should be a happy time, I should be looking forward to all the get-togethers to come, so why am I so anxious? It's because I have a genetic immunodeficiency disorder. Being around loved ones can literally make me sick. I also have Vestibular Neuritis, Vestibular Migraines and food allergies, just to name a few.
This is both my favorite and most miserable time of year. My favorite because it's time to give thanks for our blessing and the birth of our Savior. My most miserable because it coincides with cold and flu season, and surviving dinners made with love, but not with consideration for my severe food allergies.
It's hard to get family members and friends to understand that the "little bug" they have can lead to a serious infection or even a hospital stay for me. It's hard to get them to understand that too much movement in a room, flashing lights and overstimulation can lead to a flair of vertigo or a migraine. It's hard to get them to understand that the "just a little bit" of dairy in their dish can leave me spending the rest of the day vomiting and miserable. Its harder still to deal with the misconceptions about my conditions, advice on how to cure an incurable disorder, the questions about when I'm going to use my degree and go to work, and my least favorite "you can't really be that sick".
So how do I handle all these things and still enjoy the Holidays? I don't have the answer to that. My husband and I have come up with a code word so that when I've had all I can handle of insensitive behavior, we leave immediately. I'll take all the precautions I can. I'll get my infusions the week before the Holiday, I'll wash my hands, a lot. I'll wear my mask when I can. I'll make a point to avoid the flashing lights and the most crowded rooms. I'll bite my tongue and nod my head at the comments that shouldn't be made. I'll bring food that I know I can safely eat. Most importantly I'll pray and put my trust in Jesus.
#primary immunodeficiency disorder #vestibulardisorders #rarediseaseawareness