“Vestibular disorders are difficult to diagnose. It is common for a patient to consult 4 or more physicians over a period of several years before receiving an accurate diagnosis. Over 35% of US adults aged 40 years and older (69 million Americans) have had a vestibular dysfunction at some point in their lives.”
“Difficult to diagnose”….Yup. I have had a balance issue for over 12 years and do not have a concrete diagnosis except labyrinthitis but labyrinthitis lasts ‘a few weeks’ and ‘goes away on its own’ and “is associated with an infection” but I don’t have an infection and I continually have issues but no diagnosis.
As my balance is an issue I am very aware of balance awareness week and want to share it with you…my friends! I think too it is good to share so you know if I look drunk it is unlikely. If I reach out and grab your arm I’m looking for support. If I suddenly sit down it is to keep from falling down.
So my story –
While living in SE New Mexico Glen and I attended the annual conference of the Diocese in Albuquerque. While there I had a whirly gig, nauseated two days that continued for two weeks after returning home. During that time I had several appointments between my GP and an ENT and continued to be unable to walk across the room for nearly a month.
Changes in water (heavily filtered), supplements (no minerals especially no calcium), meds (different allergy pill) and a lot of PT did eventually get life under control but never truly balanced. I’ve adapted to the fact that I am nearly always a bit out of whack. Friends and family will tell you I’ve always been a bit whacky but in this case we are talking about physical balance!
The thing what helped most was the PT in that I learned to recognize ‘off’ before I fell and to correct my body position. This works because I recognize a change in the pressure from one foot to another indicating I’m leaning, generally, to the right. Because I have been a dancer, I use eye focus. Today the ability to use my eyes is crucial to being able to walk. If I lose focus life gets really interesting really fast. I can fall without recognizing I am ‘off’. Such constant vigilance is tiring. I deal with it. I do occasionally revert to extreme horribleness which generally lasts a few days. My last such was a four day run of the worst vertigo I’ve had in some years. Other times I have more energy and feel better.
It is rare that I notice too late that I am not upright and am fortunate that in12 years or so since onset I’ve only fallen a few times. I do sometimes find myself suddenly hitting a wall, counter or piece of furniture and am grateful that it was not the floor I hit!
Core strengthening exercises help to hold balance, which is one of the benefits I got from horseback riding and continue to get from dance and swimming.
I refuse to let this ‘thing’ that has no name control my life! But it has changed it.
I define my day in terms of a balance scale that is like the pain scale in every doctor’s office.
0: no issues
1: vague feeling of unease but ok
2: ok unless I close my eyes
3: less stressed than 4
4: my normal – off but managing, may have a headache later and can’t manage at this level for long or I will be exhausted. Unfortunately, this is my normal as I have more days like this than a 2 or 3. I can’t recall the last time I saw a 0 or even a 1.
5: like 4 but a touch of nausea, definite headache
6: may look drunk but still upright
7: may fall unexpectedly
9: in bed, on drugs, but can get up
10: in bed, on drugs, cannot get up
Changes in my life include:
I no longer volunteer at Little Bit Therapeutic Riding Center. I was a horse leader and was concerned I might fall which could endanger the horse and the rider. When I dance I do not do pirouettes but I still dance! I am most likely to have issues if tired so I keep shopping trips shorter and have permanent disabled parking license plates and park in the disabled space near the store. I use hiking sticks if going for a hike but I still hike! I no longer do cartwheels but at 69 that is ok!
The real issue is not knowing what the day will bring and if especially off I have no idea how long it may last. Along with the balance issues come hearing loss and tinnitus. There is no silence in my life and I miss silence more than most other things but always life is good!
I am NOT looking for ‘oh poor thing’ after all Life IS Good! But anybody who has an invisible illness needs others to be aware that there are such things and more people are affected than you imagine. Look below the surface. See what lies hidden and uphold, as you can, all who live with an invisible illness.