Keep on going.
Where does one start? I first wrote this over a year ago when I just needed to try to work out how I was feeling when my symptoms were at their worst.
Life as we knew it ended when vestibular migraines and then Mal de Debarquement Syndrome (MdDS) began. It’s been a completely different world – one of no confidence, reliance, feeling scared, anxiety, exhaustion, overwhelmed, and palpitations and panics. There’s almost always that constant feeling of uncomfortableness inside my body. That’s in addition to the constant dizziness where my head feels like it’s on a boat and my legs don’t feel part of me, not to mention the anxiety and panics. The things I once took for granted are now a constant challenge – just walking, crossing the road, having a shower, shopping, going out with friends, or eating out. How do you even start to explain that to others? That’s why I write this. I have become just a shell of who I was.
This condition impacts all areas of my life – actually, what life? Most days it feels more like an existence, although some better days are creeping back thanks to my osteo. Good days are usually followed by a crash though. Some days it’s almost impossible to function and I have become embarrassed by the way I constantly feel. It becomes hard on partners and relationships also – I have a beautiful partner who has been with me all the way through the highs and lows but it’s hard for them to watch what’s happening. I’ve been lucky at the moment where my job has been understanding (and allowed me to work from home for now due to COVID-19), but I wasn’t so lucky in my previous job where my employer told me to “change my behavior” as I had taken some time off (after being admitted to hospital!). That in itself shattered me. Having said that, I still find I need that “safe space” in my working environment and going into the office was challenging & embarrassing when I felt so uneasy on my feet, held onto the walls and desk or had a panic attack.
Getting a Diagnosis
I first encountered intense dizziness about 4 years ago. I felt odd and a GP (who I had never seen before) called an ambulance to hospital – they put it down to high blood pressure. After a second ER stay about 6 weeks later, I started on the tests, neurologists, and medication roller coaster for the first time. My regular GP just dismissed the dizziness as anxiety (something I had no history of) & often made me feel like I was making it up. Yet these symptoms still continue now. The hospitals eventually gave me a diagnosis – vestibular migraines – and sent me on my merry way. Doctor Google became my best friend at that point as it was hard to get much help or information as to what that even meant. Google lead me to 2 things that have been my “information rock” with this journey – VeDA and Melbourne Headache Solutions.
I was glad when the symptoms seemed to ease after about 18 months and I started to resume a more “normal” life.
Then, bang, it hit me again a year later – this time worse than before. Dizziness, headaches, ear pain, blurry vision, hard to walk, and not able to cope. Confusion set back in and I felt like I was going crazy once more. Again, the GP fobbed me off and I had a few visits to the hospital emergency department again. I usually look “normal” and all the tests come back clear so I must be ok, right? That’s until I have to hold the wall, or desk, or person, my legs go weak and I struggle to walk without the feeling of falling. Then panic sets in. There have been weeks on end that I have not been able to function. I have literally felt like I’ve been begging doctors for help but none came as I embarked on the next dizzy rollercoaster. The hospital suggested I find a new GP which has been easier said than done. I was referred to a psychologist – a 10 week wait list! I needed help then, not in 10 weeks. So I took a leap and found an independent psychologist through my partner’s workplace Employee Assistance Program who has been great to talk to and work through some things in my own mind. I also started seeing a new osteo and a suspected MdDS diagnosis was given. I googled again – these symptoms were me! I don’t like defining myself like this, but it helps to know what is going on is “normal” and be able to read other people’s stories and experiences. And to share my own.
This time the “side effects” such as the emotions, anxiety and feeling so overwhelmed are so much more heightened and intense and I reached rock bottom. My mind became my worst enemy and I found myself in one vicious circle – dizziness, anxiety, dizziness, anxiety. COVID-19 vaccinations (when you have an intense needle phobia) and my partner being diagnosed with stage 4 Chronic Kidney Disease and being prepared for a transplant only added to this. One minute you feel like there’s some light at the end of the tunnel, the next, it’s a crash and it’s gone. I have felt like there is no control – and for someone who is usually so in control and never experienced anxiety it’s been hard to find yourself so out of control. It’s been hard to even get your head around anything when you can’t concentrate or focus. Add not being able to function or walk somedays and the world gets pretty dark.
COVID-19 and the ongoing lockdowns in Melbourne became a blessing in disguise. I no longer had to find an explanation for not going out. No one could, so I could “hide.” Now there are no lockdowns, so I need to find a way to deal with those everyday things again. I know returning to the office will not be one of those for the foreseeable future and I find myself embarrassed by this.
I am now up and down which makes it hard to plan anything or be reliable. I guess there is no quick fix! It’s just trying to keep on track and treasure the good times.
Do not give up! As much as I have wanted to give up because I have found it exhausting and embarrassing, I have managed to find myself a good medical team to surround me now. I have my osteo, a new GP, and a psychologist. My osteo has never given up. It’s been a year of constant exercises, support and advice and if something doesn’t help, she tries something else. I finally have some light peeping through what was a world of complete darkness a year ago. I have started to accept that some days will be better than others and try not to be so down on myself when the not so good days rear their ugly head. While I am not yet back in the office, I am still working PT from home thanks to a more supportive workplace.
Read other people’s stories – it helps validate that you are not making up how you feel. Be brave and share your stories also 🙂