Propio WHAT? Understanding Our Proprioception System

Propio WHAT? Understanding Our Proprioception System

Where am I in ‘space’? Am I laying down or standing up? What kind of surface am I walking on? For those of us with Vestibular Disorders, we’re likely to ask ourselves, “Am I really going to fall down?”.  Have you ever wondered how we know these things? We have receptors located deep within our bodies that unconsciously respond to the ‘impact’ (the weight or lack of weight) put upon the joints, muscles, tendons and ligaments. This feedback or sensory input travels back to our brain, where it is processed. Unconscionably!  Our bodies and brains are such unbelievably amazing creations, I am in awe. Without getting too medical (which I easily can), I want to try to explain this amazing system of Proprioception and why it’s so important for those of us with Vestibular Disorders.

The facility I worked a dozen years, was located next to a playground specially designed for children with disabilities. I loved taking my little clients there for therapy, as the equipment there made it easy. An example of a session might include,  walking or marching over while asking or telling them “Are we marching on a bumpy or smooth surface? How does it feel to your feet?” Some might say, ‘It tickles my feet!” while another say, “It hurts my feet!”, walk the perimeter of the Park (mostly a flat sidewalk, but also up and down ‘waves’ in it). Then, sitting atop a ‘rocket’ or ‘dinosaur’  rocking toy, swinging, climbing, or sliding…Whew!  All these activities activating their Proprioceptive and Vestibular Systems. I once did all these things, right beside them with ease (that’s why they liked me best! hahaha!). Now, just to sit in a swing and raise my feet off the ground makes my stomach turn over. Why? Because without the added input I get from my feet  on the ground, I get dizzy. My Proprioceptive System is off kilter! Not knowing where I am in space, for just that split second, can cause tremendous disorientation in me. Then, add to this, our visual issues (double vision, Nystagmus, etc.), and the VOR (Vestibular Ocular Reflex), and you have the perfect storm for taking a fall. I fell, again and again, breaking seven bones during the worst of my Labyrinthitis, yes I said seven! I broke my tailbone alone, three times! There definitely was a period of time I didn’t want to move! Once VRT began, of course, I was pushed (forced) to move around in space. I wanted to be bubble wrapped! My PT encouraged me to ‘stop watching the floor’ and ‘touching walls’. I did make progress, I really did, until Sarah’s accident (Into the Great Unknown… Part 1). I put others needs before mine (caregivers curse?) and again, I became ‘lost in space’, back to looking at the ground, back to wanting to touch a wall, yet once again…

When one of our ‘operating systems’ are under or over stimulated, another system kicks in to help compensate, or it shuts down altogether. The human body is such an amazing creation and most of us (me!) take advantage of our bodies at some point in our lives. Be it through lack of sleep,  getting proper nutrition, over indulgence in alcohol, smoking, etc., most of us have something we could do better for our amazing bodies. Receiving a ‘dual’ diagnosis within a year (Labyrinthitis and Fibromyalgia) was quite overwhelming. Both of them wear you out! Both of them have ‘dizziness’, ‘fatigue’, and ‘brain fog’ listed as  symptoms. So many overlapping symptoms, how do I know which is which? The biggest difference is the unrelenting pain that comes with Fibromyalgia. The thing they have in common? For both, I should be moving more than I do…

Having a Vestibular Disorder, though, makes me NOT want to move. I have found this to be a common ‘side effect’ in my research and it all says basically the same thing (that I don’t want to hear!), MOVEMENT helps or cures for some, if not most. So with the upcoming Balance Awareness Week quickly approaching (September 12-18), it only makes sense for me to try (AGAIN!) working on my own balance. So, I’m putting on ‘my big girl panties’ and have Mike drive to the Park next door to my old workplace and go play on the equipment! Maybe…if I’m lucky, there might be another child to play with…

vestibular.org

 

 

Questions Galore. I Question It All!

Questions Galore. I Question It All!

I’ve started about 6 different posts and completed not a single one. Am I having brain fog or am I just scattered? I think it’s a little of both, but no matter, I still need to complete one of them! I continue to come back to this question, how did I wind up here? A 60-year-old woman, forced to retire from a career I loved because I am chronically dizzy? “If you can’t see it, then it’s not there“. We all know the feeling of having someone not believe you. WHY would anyone fake a Vestibular Disorder? Attention? I do NOT need this kind of attention, believe me!  I have come to realize, it takes a strong person to deal with an invisible and chronic disorder, a very strong person. I’ve come to believe I am this strong person. The old saying, “Walk a mile in my shoes”, comes to mind. To walk in my shoes, you’d have to be willing to take a fall at the drop of a hat and break some bones, multiple bones! Yes, a Vestibular Disorder is invisible as it lays within our brains, but the symptoms are surely visible. At the very least, they can see the bruises I bear from ‘clipping’  doorways or tables or the footboard of my bed. The fact is, I don’t get out much, not much at all. Nine times out of ten, it’s to go to a doctors appointment. So yes, I do a lot of wondering what got me here, besides the original sneeze…

If I look back at my medical history, I guess I have always been a ‘sickly‘ person. Aside from the usual childhood diseases of the era (circa 1958). My oldest sibling brought them all home from school. Most of these diseases either no longer exist or we now have vaccinations for, such as Measles, Mumps, Rubella, Scarlet Fever, Chicken Pox, Whooping Cough…My poor mother watching helplessly, as each disease traveled down the line of siblings. Catching one after another from sibling to sibling, all within a couple of months. My mother was the only one unaffected by that first school visit. Mother documented this period on a calendar and it was crammed full of notes, who got what when and such. It overlapped into the Christmas holidays, yet we still had our regular holiday, just 4 children opening gifts, covered with scabs! We all survived, with the worst side effect was scarring from the Chicken Pox. The Small Pox Vaccination was a ‘badge of honor’ for our generation, leaving a scar on our shoulder (Mike received two due to a distracted school nurse!). Small Pox no longer exists because of vaccinations. Was my mother a Saint? The simple answer, yes!

The only difference after that, my appendix was taken out when I was six-years-old ( this is me at that age above). I caught a Staph Infection at the hospital, prolonging my stay. This is the infection that, I believe, made me susceptible to every single thing that followed. It wasn’t a Superbug of today, but I’ve had a lifetime of some kind of illness, way more than the average person. Is this scientific? Of course not, but it’s my hypothesis…None of my siblings were hospitalized in childhood, just me. None had health issues like me. I was ‘teased’ for being sick. Isn’t that what siblings do, though? So I really wonder about Staph...Back then, simple Penicillin ‘cured’ it, yet it recurred over and over in me. We now know the overuse of antibiotics, makes us resistant to them. There was a time, I didn’t think twice about taking them, but I am now resistant to take antibiotics! Most of the diseases we get are viral anyway, making antibiotics useless. I think it makes us feel better that we are given prescriptions after seeing a doctor when we’re sick. Because when you feel so bad, you want that magic pill.

America is a prescription pill Nation. I’m beginning to question all the medicine I take after a mix up with my Lyrica (NOT my fault!). Most meds, I’ve been on so long, I don’t even look at the label to see if it was written or filled correctly. I just filled my pill holder until they’re gone, then call in for a refill. A few weeks ago, I ran out of the Lyrica (of course, it was a Friday…) and called in my refill only to be told, “It’s too soon”. Then, I did I look at the bottle. ‘Someone’ at the doctor’s office had called in half what it should have been! Of course, the person failed to properly document, thus remaining unidentified. really? According to the pharmacist, “She couldn’t call my doctor” (*note: Do not be ugly to the person who might save you) and according to my doctor, he was “On call all weekend, they should have called me. You can’t go without that medicine”…Regardless, I had to go without them for 3 days. Three days of almost immediate withdrawal symptoms, nausea, vomiting, profuse sweating, and pain unlike I’d felt in years! Lyrica is a Class 5 Narcotic they say is non-addicting but after that??? Now, I want off of it but am terrified after that experience. I know the dosage is slowly lowered, but still…Back to researching…As I have more questions now…

 

vestibular.org

Appearances May Be Deceiving

For all the women still able to, or having to work…Just how exhausting is it getting yourself ready and putting on your ‘happy face’ for work? Exhausting! High fives to all who blow-dry or curl their hair! You GO, girl if you put makeup on! My dad’s mother was a cosmetic buyer forever, and watching her ‘put on her face’ was the source of many a fight between the 4 siblings (even my brothers wanted to see). It was a ritual. She was a beautiful woman who taught me the importance of good skincare, which I continue to this day. Clean, clear, well-moisturized skin goes a long way in my book. I can’t say, honestly, that I look sick any longer (most of us probably don’t). I look sad, but not necessarily sick any longer. I look tired. Who of us gets the kind of sleep we once had? I know at times, I probably look mad (I am!). At this moment, I look older than I’d like, due to being too tired to color my hair (I have a white halo effect going on right now). Who am I kidding with that? My husband took over that job a few years ago! I couldn’t even imagine going through my old morning routine! It was minimal I assure you, but I get tired thinking about it.

Before being hit with Labyrinthitis, I didn’t have trouble sleeping. I was SO a morning person! It was easy to wake up without an alarm, jump in the shower, brush my teeth, etc. I rarely used a blowdryer and occasionally, minimal makeup (hippie chick, remember?). I’d wake up eager to go to work, how many people can say they LOVE their job like that? I was the person you ‘hate’ because they’re so perky in the morning, even Monday mornings! I laughed, joked, and played throughout my work day (keep in mind I worked with children!). I was always baking something yummy (appetizer cheesecake anyone?). I baked fresh bread, cookies, and such. Yeah, I was one of those…I get it now. I get how irritating it can be to see another so perky and chipper when you feel horrid. I miss that old me… Pssssst…You’re still in there, Margaret! To all of you, YOU are still in there, too!

My daily life now? I sleep well, but only because I take Ambien. I have to ‘weigh out’ each day, just what I can accomplish, in OT we call it Energy Conservation. An example: My hair needs to be colored and even though Mike does it for me, I still have to sit there with my head in bizarre positions. I shouldn’t gripe but I have a lot of hair, so it does take quite a while to do it all (maybe 1 1/2 hours?). Then I have to get that crap all out! I have to wash my hair twice, condition it, wash my body, dry off, and put lotion on my 5′ 10″ self…That’s usually it! I’m done! Totally exhausted, but my hair looks great again…Even though I claim my hippie side, I have enough BareMinerals makeup to fill a professional style bag! I have false eyelashes (antiques by now!) in there! Every once in a while, I’ll pull it out, dust it off and just look at it all…BIG sigh…I remind myself, “But your skin looks great”…

I was once known for my fashionable dressing. Now? I live in clothes that make it ‘appear’ I work out, like yoga pants and a cami top…day in, day outBORING! I am quite capable of making my clothes, I’ve sewn since age 7. Being so tall, I learned to piece together patterns. From there, I learned to make my own patterns. I worked as an ‘In-House’ Designer for a clothing manufacturer. I had a Bridal and Evening Wear business for 10 years, where I showed my Original One-of-a-kind creations with a Designers Guild twice a year. I designed our daughter’s Wedding Gown, all 9 yards of fabric with 748 gold beads and 432 pearl beads, thank you very much! And I wear yoga pants and a cami top and sometimes, I have difficulty deciding which color to wear…Sigh…

When I left my job, there were many changes going on…They were discussing us beginning to wear uniforms, the horror!Where’s the fashion sense in a uniform? We were just beginning the switch from handwritten Progress Notes to Computer notes. I HATED it, absolutely rebuked the idea to the end! Here in the USA, it is Occupational Therapy that is fighting to keep Cursive Handwriting ‘alive’. My mother ingrained all her children the importance of handwriting. That was a huge part of my job, teaching handwriting in the school system. Now? I live on my laptop and have become quite competent with the 21st Century contraptions…I feel lost without my laptop now, so very odd to me, a computer would become my social life! The truth is, sitting here as I am, secure where I am, I don’t feel dizzy, maybe because I’m in bed?

With the modifications I’ve put in our shower (a shower chair and a grab bar), there are no problems in this aspect of getting ready for my day. Minimal as my preparation is for an outing, there are still going to be one of those days every so often. This old hippie will tell you, “You are gorgeous! Just the way you are. You don’t need makeup to be beautiful, as you already are beautiful. Haven’t we been through worse than being seen without hair and makeup?” I encourage you to just try going makeup free for a day… Just your stunning clean, moisturized face and a big smile! For those who do wear makeup daily, you are a stronger person than me, truly! I am not anti-makeup by any means, either. It’s just more work than I am willing to do…Do you feel you ‘have’ to wear makeup before going out? Do you wear it even when not working or going somewhere? Has your mate never seen you without makeup?

vestibular.org