‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.
Meet Melanie
Melanie is a book blogger and craft enthusiast based in Surrey, England. Her current craft obsessions include cross-stitch, knitting, crochet, and embroidery (and some failed attempts at sewing…). She opened an Etsy shop in 2017, Dotty Designs Studio. The last book she read that she couldn’t put down was The Seven Husbands of Evelyn Hugo by Taylor Jenkins Reid.
How It All Started
It was 2018 and I was just about to start an exciting new job when my health took a nosedive. I thought to start with it was a hangover side effect from the Citalopram I came off earlier in the year as the symptoms were very similar.
My balance was off, I felt motion sick when not moving, and even when laying in bed it felt like I was on a boat. On top of this, I was so fatigued that something as simple as taking a shower would require a few hours of rest to recover from. I was also permanently nauseous and had frequent abdominal pain.
I went to my GP and they didn’t seem to understand all the symptoms as one cohesive problem despite them always being present at the same time. This began a long and difficult process to try and get to the bottom of what was happening to me, which included breaking down in tears at the hospital and many a sleepless night worrying that something was seriously wrong.
As the months dragged on I struggled to get my head around the fact that I wasn’t going to get better anytime soon, and with no diagnosis or success with medication my body felt out of control. I was missing huge amounts of work and was frustrated and anxious about not being able to get stuck in.
The fact that I was on a temporary contract only exacerbated these worries, and threats of dismissal if I didn’t improve, my attendance didn’t help matters. I would drag myself in, exhausted by my almost two-hour commute, and struggle through the day, only to find myself completely incapacitated the next. I felt helpless.
I felt relieved when my doctor signed me off work for a few weeks, easing a little of the pressure I’d been struggling under.
My Diagnosis
Long story short, I was eventually diagnosed with vestibular migraine, with no follow-up support or care plan. My GPs have helped as much as they can over the past few months and I’m doing all I can to manage the condition myself.
I’ve been following the Heal Your Headache diet (a slight misnomer for this type of migraine as headaches are often not a symptom) since November, taking a number of supplements, and trying to manage my activity and sleep levels as much as possible.
I had some sessions with a physiotherapist who gave me a series of exercises to re-train my brain to balance properly, which I continue to do every day. I strongly suspect that I am also suffering from Persistent Postural Perceptual Dizziness alongside the migraines, and will hopefully be starting investigations into this in the next few weeks.
How It’s Changed My Life
In many ways drastically, yet I have adapted to it – what I now consider a good day would previously have counted as a pretty bad one. I am unable to drive or ride a bike, meaning I have become a lot more dependent on my husband.
Anxiety levels continue to be high. I hate letting people down and being unreliable, both at work and socially. Over the last year, I have been in what has often felt like an endless bad patch. At some points, I have been entirely housebound. At its worst, I can’t even sit and read.
It’s made me reluctant to make plans with friends for fear of having to let them down at the last minute. This, combined with having to pull out of the amateur ballet company I loved to dance with, has meant my social life has taken a hit.
It can be lonely being chronically ill, and as someone who isn’t very good at talking about their health, and who suffers from an invisible illness, it can be hard for people to understand.
It can feel quite exhausting just trying to function at quite a basic level. Even on good days, the world can be hard to navigate. I am incredibly sensitive to motion which makes it hard to use websites with rolling headers or moving ads, and sitting next to somebody scrolling on their phone on public transport is a real challenge.
Sound can be a trigger, so being in a noisy space such as a pub can make me feel more unwell. I miss being active and making plans without worrying I’ll have to cancel or feel too ill to enjoy them.
Before becoming ill I was always active, and people often commented that I tried to do too much. I’d always had a keen sense of the brevity of life and how easily your life can be changed, and I’m so grateful that I threw myself into the things I love as much as possible when I was able. I hope to be able to again one day.
It’s been good for me to learn to be OK with doing less however and to not beat myself up if I’m not being productive 100% of the time. It’s also taught me to appreciate things more – the sheer joy I feel when I’m able to join my dancer friends in a class far outstrips any appreciation I had for it before.
I’m fortunate to have a supportive husband looking out for me, and joining support groups online has helped me learn more about my health issues as well as provide an understanding ear when I need an extra bit of help, as well as offer the same to others.
My Favourite Superhero
My favourite superhero is Spider-Man, having been a fan of the cartoons in childhood and then of Tobey Maguire’s depiction in the early noughties. I continue to enjoy the latest films too.
If you would like to stay up to date with Melanie, you can find her on Twitter and on her blog, Ramblings Of A Nobody.
