Nikki’s guest post is the 40th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.
My name is Nikki Albert, blogging as the Brainless Blogger, from Edmonton, Alberta, Canada. I have a few chronic illnesses that have compounded and jump on each other over time. I have Fibromyalgia, Chronic Migraines, Peripheral Neuropathy, Asthma, Hypothyroidism, and Vertigo. I may have missed some. Hard to keep track, eh?
I would like to talk more about the Vertigo since it is the struggle I’m currently dealing with the most. It has lowered my functionality substantially. I thought my quality of life sucked and then I found out it can suck more. And that is something to be aware of. We can always have sudden downturns in our health.
So, with Vertigo, the symptoms are like being on a roller coaster or in a funhouse but without any of the fun-ness. No fun-ness at all. Basically, there is the Vertigo itself which is external and internal. Internal Vertigo is the spinny mc-spinny spins. Where it feels like the inside of your head is whirling around in a tornado. The external Vertigo, on the other hand, is like the whole world suddenly whirled and spins… and this tends to cause a case of the falling. Immediate falling.
Now other than the actual Vertigo, a Vestibular Disorder comes with a whole lot of other weirdness. So, one thing is that the ground feels less solid. Like maybe you are walking on a water bed all the time and sometimes… the ground feels like it is just not there and you lunge to the side or, again, fall over.
There also comes the sense of falling when you actually are not. So internally you feel like you are falling or physically moving or rocking when you are not. And sometimes your body tries to adjust to that and you actually do move. Like when I stand, I begin to wobble as my body tries to stay upright because apparently, it has no idea what upright is. Like a bobble-head really. Wibble wobble.
I also will walk into people, furniture, doorframes, walls, corners… basically, I will not walk straight but in the direction of objects without realizing it. I have no balance at all and need a cane to walk. My ears do weird pressure things and ringing. I am dizzy all the time but also have severe bouts of dizziness that leave me just zoned out and dumbified. Spaced out. No one home. It is like my body fails to understand where it is in space. I mean, completely.
So, it falls and stumbles and gives me all these crazy sensations. And I feel disorientated and confused. Obviously, they won’t let me drive. And I can’t work. I need a whole lot of rest per day because it is insanely fatiguing to be this dizzy and out of sorts all the time. And even with rest, all the symptoms get worse as the day goes on and faster the more I am upright.
I do take medication that suppresses the vestibular system a bit. Thankfully. Without it, I live on the couch for my own safety… as in if I fell down the stairs without that med and it is difficult to get around or think or do anything. With medication, well, it is a wee bit better.
How It Affects Me
How this affects me is that I am far more limited than I have ever been in my life. More fatigued than I have ever been. Less functional than I have ever been. I can’t drive. I can’t read for long anymore. I have difficulties with focusing and concentration More than I did with pain. It has magnified symptoms I had with pain for sure. And it is so hard to do literally anything. And everything requires rest. And I always feel out of sorts and dizzy. It is not cool that that is the best I feel.
When it gets worse, it is frustrating because I begin to not understand people. I am too zoned out by the vertigo and dizziness to comprehend what they are saying. I have to say ‘I just don’t understand what you are saying’. Or I zone right out and people tend to notice that because I am totally spacey. And mobility is obviously a problem which sometimes is severe and sometimes my cane does the trick for me. I’m sick of it really. I want it properly diagnosed and treated because living, being bombarded by these symptoms that can get severe, is nuts. It is just nuts.
Learning To Adapt
I have slowly begun to adapt somewhat but it has been a real process. First was accepting I needed a cane. After some serious falls, I decided I really didn’t want to fall in public. Or look drunk in public. And my medication has helped suppress the intensity so that I can do a little bit each day. I have learned, with medication, I am most functional in the morning and that is when I can do things… not so much later on. And if I want to socialize later on in the day, I must rest all day to do so and I cannot do it for long or the symptoms go nuts. That is very unpredictable.
I can rest all day and go to a friend’s house for a game night, be fine for a little bit, and then suddenly severely not fine. I just do not know. It is whimsical. Like the falls I have had. One moment thought I was stable enough and then bam floor is ‘gone’ or external Vertigo hits and I am on the floor wondering how I got there.
Changing As A Person
Now things change when you become sick. It just happens as you cope with pain. Some good ways and some bad ways. I think things didn’t change as much when I became ‘officially’ disabled. Because I had acceptance. True acceptance that I had to deal with my limitations and pace. That this was the way it was for now and I had to cope with that reality which may, in fact, be my long-term reality.
So, less volatility this go around. You’d expect more since I have less functionality. That at least is worthy of a good rant and rave against the fates, I’d think. Instead of, meh, it is what it is, eh? Well, not that ambivalent.
I have feelings about this downturn in my health and desires to improve but I definitely have acceptance. And I have all the coping skills 20 odd years of chronic pain has given me to lean on. Now those 20 years were hard-earned. I changed during them. From a good decade of deep depression to learning humour to mask my suffering… lots of little things that altered how I perceived the world and dealt with stresses but eventually you do develop some strong coping skills, the hard way.
Yes, I definitely learned the hard way, and then did it again for good measure because it didn’t stick the first time. So, I have all of those. And it is keeping me sane while I wibble wobble through life with a befuddled expression on my face.
My Favourite Villain & Superhero
My favourite supervillain was in the movie Unbreakable and Glass – Glass because he was extremely intelligent but physically fragile. Which made him feel immensely isolated and alone. And I relate to that a lot really. Something about the higher your intelligence the more isolated you are no matter how many people are around you. Not that I am an evil Genius. Or am I? Bwahahaha. Okay, no.
And I feel broken in many ways physically. And have mentally and emotionally in the past as well. But definitely, this feeling that my body has failed me. But my brain, even with all the confusion and brain fog and dizziness is still what it is. And it is Just his mind that is his power. Not telepathy or anything else. And I like that. That is his salvation and his destruction.
My favourite superhero, on the other hand, is Wolverine – because he can’t be hurt. His bones covered in the metal Adamantium. He heals from every wound. He is strong, gruff, takes no shit from anyone. He is my wish fulfilment. Who I wish I could be in an alternate universe, well, a female version which I would rock. And he is awesome.
I loved his comics when I was younger. In a way, he is like Bruce Willis in Unbreakable- he is immune to harm and, in that way,, we can envy that. Because we are not on that side of the spectrum at all. So, it is cool to fantasize people exist that do not have the ailments and concerns we have ever.
Thanks Nikki for sharing your story with my readers and me!