19 Months of Dizziness

19 months of dizziness (I can't believe I just typed that!), 19 months of dizziness and still no end in
sight. I've spend thousands of dollars on medical tests and seeing specialists, shed tears so many times (in both my doctor's and psych's offices), spent hours googling dizziness and the possible causes and am slowly reluctantly accepting that this is my life now and I will always have dizziness.

At my last doctors appointment I told my doctor that I wished the MRI I had recently had shown something (anything!) because I wanted people to see that something is wrong with me and I'm not lying (which I'm not). My doctor's response was that it showed him just how over it I was because I wished I had brain cancer or something else serious because I wasn't coping. I get comments like "If you are dizzy then how you can stand up straight?" (because its not the type that causes me to faint and you learn how to adapt your body to it but I do walk into things regularly), "Are you sure it isn't your anxiety?" (100% my anxiety has never manifested in dizziness), "Are you sure it isn't Meniere's/POTS/inner ear issues/*insert some other common issue*?" (yes because if it was one of those then it would've been sorted by now) and "You don't look dizzy" (what does dizziness look like exactly?!). Because it has been going on so long many people know about it but very few really know the true impact. 

I've had to learn how to adapt my life with this dizziness something that hasn't been easy. I can't let this dizziness impact me but there are times when it does. I can't drive for more than 30 minutes as then the fatigue sets in and with that it's hard not to focus on the dizziness. I make an effort to attend things and stick to a routine and schedule. Yet I have days where I can't find the energy to get off the couch and do things or as soon as I sit down I know that day won't be productive. When my dizziness increases I know there will be a transitional period and with that comes me having to scale back my life at least for a few days. I get headaches and nausea when the dizziness increases and I find myself living off Sprite just to help mask it. 

I see my doctor every other week on a Thursday at 9.30am (the receptionists see it as my appointment haha) and during that time I let myself feel things and be honest with myself with how I am coping. It's the one day I let the anger take over and the tears fall and then I go on pretending that it doesn't impact and that I am coping. I get told that I am coping so well and it's ok to be angry and shed tears because anyone else in my situation wouldn't be coping at all. I want to yell that to people when I do loose it at times and ask them how would the be coping if they were in my situation because I guarantee they wouldn't be coping. 

I've become an expect at reading medical journal articles and googling things. I'm always googling terms and symptoms and then try to work out if I can relate to anything or if there's any new leads. Nothing points to what I am going through - consistent dizziness increasing and it staying the same whether I am standing up or lying down (I am even dizzy in my dreams!). I know we are missing something but I have no idea what, I joke I should be on that Netflix show diagnosis because someone somewhere must know what I am experiencing. 

I want there to be a cure or treatment and if it was straightforward then I'm sure there would be but at this stage I am wondering I will ever not be dizzy. I hate how I have been on so many different medications over the past 19 months and none of them have worked. I wonder how the dizziness will impact my life long term if it permanent, will I be forced to give up driving? What about working? And relationships? My life is complicated enough but throw in dizziness and it takes it up to a whole new level. 

It's been 19 months of dizziness and I wish I have something more to report but I am still dizzy and surviving (just) and that's all I can hope for. 

Comments

Popular Posts