Guest Blog by Sarah De Capua

I was always pretty healthy – until I wasn’t.

I was always pretty well-informed – except I wasn’t.

I always had enough energy – until I didn’t.

I’d been ill on and off for years with a vestibular (inner ear / balance / hearing) disorder called Menieres Disease. Menieres Disease is a rare-ish illness that affects around 1 in 1000 people and manifests by severe dizziness, sickness or nausea, hearing loss, tinnitus. It’s not very pleasant – many people have suffered with Labrythinitis at some point in their lives and Menieres Disease is similar.

For those who are fortunate not to have been affected, think of how you feel when you spin in a chair or come off of a fairground ride, then add the constant sound of sitting next to a fridge, neverending nausea and the wiped out feeling you get from having flu. Then let this all go on for days and days. But I was ok. Aside from being ill with this for about a week a couple of times a year, I was fine. I was driven and motivated, working long hours and earning good money.

Then I came back from holiday with a bad cold, which led to my usual Menieres Disease symptoms. So far so normal, but this time I didn’t get better after a week. Or a month. I went back to my GP again. And again. Eventually, I was referred to an Ear Nose Throat specialist. She sent me for brain scans and then told me – “Ah no you don’t have Menieres Disease – you have Vestibular Migraines” (Like a standard migraine, no head pain but all the other migraine symptoms). I was sent on my way with a variety of pharmaceuticals, but generally told it wasn’t much to worry about and come back in six months.

I didn’t get better.

By this point, I had been signed off work for several months and was starting to feel pretty low. I was unable to do anything apart from lay in bed or maybe make it downstairs to the sofa. I couldn’t cope with nothing changing whilst I was waiting for my next ENT appointment. As I had now been told that I was suffering from migraines, I found a related website online and printed off a list of all the drugs prescribed for them. I took the list to my GP and worked my way through it. They were happy to give me pills and I tried six different prescription drugs.

I didn’t get better.

Eventually, I went to a private ENT consultant who sent me to Harley Street for a bunch of tests. I was finally told that “Yes you do have Menieres Disease after all and the signals from your balance system to your brain and your eyes are not matching up, which is why you feel so bad and your balance is so poor. And you also have crystals moving in your inner ear”. I nearly cried with relief – just feel I was being taken seriously was a huge milestone.

My ENT consultant set to work with a treatment plan, sending me for balance retraining and starting with injecting steroids directly into my ear drum. For three weeks I had the injections, which involved lying on one side without moving for 45 minutes and trying not to swallow or throw up. But I still didn’t get better. So at Christmas 2016 I was admitted for another, different injection under general anaesthetic. No change. I went back to my ENT consultant and he told me to cut down on sodium, but apart from that there was nothing more he could do at this point.

After I’d gone home and cried, I took a long hard look at my life and realised that I had released all my control for my health. I had put my trust into drugs with long unpronounceable names. We expect to be ill then get better don’t we? I’d certainly never hear much about how to live with chronic illness, if there’s no treatment.

So I turned to the internet for answers. I took myself down the rabbit hole of the wild and wacky, the miracle cures and the might-be-worth-a-try ideas. I read everything I could get my hands on and watched a thousand You Tube videos. And I tried everything! From ginger (pretty good for nausea) to putting a clove of garlic in my ear (just made my ear smell). Eventually I came across a number of different sources talking about a plant-based diet, so I thought it would be worth a try. I cut out all meat, dairy, animal products overnight. It was surprisingly easy and the food tasted good – even my committed meat eating husband agreed!

Gradually, slowly, bit by bit, week by week I started to feel a bit better. I was able to do more, get out more, be more. And it was a virtuous circle – the more I could do, the more I wanted to do. I started to think about what else I could do to help myself. Each day I wrote down all the things I was able to do in a day, however small. Being able to get up, have a shower and empty the dishwasher was a major achievement that I celebrated and recorded. I also developed my own 10 Steps to Wellness:

    Diet – healthy vegetables, fruit, nuts, beans, wholegrains and seeds. So much variety!

    Water – the most natural hydration

    Sleep – enough sleep; not too much/not too little

    Meditation/mindfulness/relaxation – concentrating on being present in the moment breathing and breathing alone, just for a minute to start with then a bit more

    Exercise – sometimes a walk to the living room; sometimes a walk round the park; sometimes more

    Being outside – there is something about being in nature that is grounding and life-affirming

    Routine – creating and sticking to a routine each day provided structure and enabled me to see improvements

    Sunshine – not easy in an English climate, but a few minutes a day feeds my soul

    Joy – finding simple things that bring joy: spending time with my cats, seeing a flower, watching an uplifting film

    Laughing – or smiling even when you least feel like it – fake it til you make it !

After a year and half I was eventually able to get back to work, but when I did I developed a To NOT Do list. This included not compromising my health for work, not putting work commitments before my wellbeing and not doing anything that wouldn’t fit with my values.

I still have a chronic illness and I have bad days and sometimes weeks or months – mostly when I don’t follow my own advice! My health and wellbeing is a work in progress and I don’t always get it right. But I also know that I have more tools than I was able to find from conventional care.

I have found a way to manage my condition and have a level of control over the way I feel. My steps may not work for everybody but I truly believe that when we take action, however small, we have the ability to affect change within ourselves.