The Pink Walking Stick

The pink walking stick stares at me resting next to the front door it's a reminder that my life has changed once again to chronic illness. I try not to let myself cry over my life and what I've lost due to the dizziness those tears are reserved for the safety of my doctor's office and psychologist's office where I can be vulnerable and be honest with myself. I rattle off the names of the various medical professionals I have seen along with all the medical tests I have had whenever someone asks me yet again if I have tried this thing. I don't pretend that I'm not complicated medically but I also hate unwanted medical advice. I tell people I have chronic health issues and leave it at that but now the walking stick opens up that door to more comments and the fact I can't pretend things are fine when they're not. 

My most recent neurologist appointment just over a month ago was a disaster and left me with more questions than answers. I was told I did have PPPD and I would get referred to a neuropsychiatrist whatever that is and a vestibular physio (despite the fact I had already seen the top vestibular physio in the state). My doctor's disappointments echoed mine and he was annoyed that they wouldn't write a report stating the impacts the dizziness has on me. But nothing could prepare me for what would happen two weeks later. 

The falls came on suddenly but there was no denying that in the weeks prior my dizziness had worsened. A one-off fall became multiple within days until there were times, I worried about my ability to stand in the middle of the room unaided. I avoided eye contact when I told my doctor I had been experiencing falls due to my dizziness because I was ashamed and annoyed that this was happening to me. I had never expected my dizziness to cause falls yes it was a concern initially, but I had overcome it and told myself that no matter how bad the dizziness got it wouldn't result in falls as with PPPD falls (and almost falls) don't happen. The question or more like statement came soon after that maybe I should get a walking stick to help my balance, I told him no way but the more I thought about it the more I knew I needed one. I found myself on a Friday afternoon in a pharmacy buying one, it would take me another week to get the courage to use it regularly. I refused to cry over the fact I had a walking stick but when I saw my psychologist this past week and she naturally commented on it the tears started to flow when I told her the story of the falls and honestly, they haven't really stopped. The stick represents another thing the dizziness has taken from me, it lets the world know that I am not alright, and I find myself wondering if I will need different mobility aids in the future. 

I rang up the hospital outpatient appointment number a few weeks after the neurology appointment and was told my referral to the neuropsychiatrist was considered a level 2 or semi-urgent, with a wait time of 18 months for an appointment. I asked them what I could do to see the neuropsychiatrist sooner and I was given the urgent referral fax number and told to get my GP to send through a referral stating my falls and increase in dizziness. That referral did nothing to budge me to urgent.  I ring up the outpatient number at least once a week to check on the status of my referral and see if a change has been made. The people, I speak to send emails through to neurology asking for an update because even they are shocked that my status hasn't been changed. My pleading falls on deaf ears with the neurology outpatient clinic admin when they sometimes call me back and I ask what else could I do. I am 28 with a walking stick, I am taking ibuprofen daily for tension headaches, the dizziness wakes me up at night multiple times (again something that shouldn't happen with PPPD), I get woken up in the morning with nausea and feeling like I will throw up, food doesn't sound good to me but I force myself to eat, I have multiple almost falls but thankfully no major falls (yet) due to the precautions I am taking and yet I am not considered urgent by the neuropsychiatrist. I have increased my small group physio to 4 times a week to help gain some control over my balance never mind that over the past 12 months, I have been working on my joints and balance with my physios. 

My GP is concerned but there's nothing he can do except try to contact colleagues and specialists to see

if they will take me on, but no one wants to touch me. I am tired of fighting and staying positive, I am tired of specialists consistently assuming that it's my anxiety or anti-anxiety medication causing the dizziness, I am tired of people trying to be "helpful" with unsolicited medical advice (I don't want medical advice I have a doctor whom I trust and respect) which borders from basic (asking if I have had my inner ears checked) to out there (telling me I should stick cotton wool in one of my ears to bring back my balance) and I am tired of having to keep going when everything is just getting too much. It's been almost four years of this dizziness and it's not getting any easier, it's not even plateauing it's getting worse. But instead of hiding away and not leaving my house, I try to live my life as best I can. I study, do support work, bake, go to physio, and see my doctor weekly. I let the facade down in the safety of my doctor's and psychologist's offices and a few trusted close friends and that's when the tears fall. The rest of the time when I am out and about, I pretend that things are going ok even if deep down I am struggling. 

I'm slowly learning to be friends with the pink walking stick, it's taken a few weeks, but I am slowly seeing it as a helper and not something to be ashamed of. The walking stick is a tool that helps me keep living my life and provides me with much-needed balance assistance and it's what I need hopefully not forever but for now.