Cold comfort

Be yourself everyone else is taken

Age: 50

Diagnosis: Bilateral vestibular hypofunction

In 2017 I caught a cold. Yep, bog standard heavy cold. This time though, it affected my sinuses and I resorted to nasal decongestants to ease the discomfort. Day 8 I woke in the early hours to a spinning sensation as if I were on a roundabout. I actually lay in bed for a while trying to recollect what I’d been drinking the night before (I hadn’t). I stumbled out of bed, clambered to the toilet clinging to the walls for dear life terrified that I had a brain tumour…. I waited in bed clutching the sheets until my gp surgery opened the next morning…I logged my difficulties and waited for a phone call. My gp called later the next morning and diagnosed over the phone labyrinthitis and assured me it would be gone within a few weeks. Anti sickness tablets prescribed I waited….advised I couldn’t drive or walk safely I stayed in bed. Two weeks passed and no improvement my gp now decided I had vestibular neuritis and now advised this could take 6 weeks to settle. I waited….. 6 weeks later, no improvement my gp now requested to see me. I walked (or rather stumbled) into his surgery. One look at my balance and he decided I’d had a stroke so I was blue lighted to the local hospital who after various tests and MRI decided this wasn’t a stroke and I needed an ENT consultant. A few months later (symptoms still the same) I received an appointment for 9 months time. I’d pinned all my hopes on this appointment which when it came (due to my poor experience) was devastating. Within the first few minutes the Consultant stated I had permanent brain damage and what was I expecting? Referral to audiologist followed and for the first time I experienced empathy and proactive testing- vng caloric tests etc. A year after my first episode I was diagnosed with bilateral vestibular hypofunction and given rehab exercises and a clear outline of what this actually meant for me day to day. I was told I would have decompensations (relapses) if I were ill, tired, stressed, etc but with dedicated time to do rehab, slowly I found a new normal.

It has taken a long time to accept my new normal. I’ve always been a high achiever and used to working at a hundred miles an hour with pacing being an alien concept. After numerous relapses and months off work I’ve learned to be kind to myself, pacing, keeping hydrated and being honest when I feel symptoms creeping back in. I have been extremely lucky with a manager who has pro actively supported me and has made adaptations to my role to support my recovery. I have struggles every day like everyone else with a vestibular disorder but I refuse to let it inhibit me. I take opportunities to promote awareness of vestibular disorders whenever I can as feel there is a lot of ignorance surrounding them. In spite of my disorder I’ve been promoted, walked from London to Brighton for charity and achieved a masters, which proves anything is achievable for my fellow dizzies. In my youth I was called a dizzy blonde and now in my 50s I have fulfilled the title!! I have the utmost respect for anyone who has a vestibular disorder. It’s truly tough. Be kind to yourself and who knows what may be possible.