a woman sits tired and alone in a corner while everyone else around her parties

Struggling to Accept the Impacts of RLS

As a sufferer of restless legs syndrome (RLS), I seem to spend a vast amount of my time trying to insert myself into the normal daytime culture instead of being the night owl I have become.

Spending each day on its head proves troublesome; whilst you can have your groceries delivered at 10 PM, trying to bribe your local parcel delivery driver not to knock at 2:30 PM is a lot more of a struggle! Funnily enough, they don't schedule drop-offs for midnight (how inconvenient!).

Whilst communication with friends and family can be sent in the wee small hours, they tend to get annoyed when you complain about them not holding a conversation regarding the latest episode of our mutually adored TV show at 4:30 AM.

Kept up at night, struggling with impulse control

RLS keeps us awake all night, unable to relax, unable to concentrate. Even thinking can prove a battle sometimes; you put the television onto a mundane shopping channel just so you don't have to follow plot lines or a show that you have watched a thousand times before so the script seems like second nature.

Staying away from the internet is a double-edged sword for an RLS sufferer. Certain medications we take to counteract our symptoms have challenging side effects; one, in particular, affects our self-control, so I used to spend most nights on social media finding like-minded people to chat with to pass the time.

Another side of impulse control: compulsive online shopping

My other vice was trawling shopping sites — ordering items I didn't need, and sometimes couldn't afford — just to trigger my dopamine. I sent items back time after time, ultimately costing me a small fortune in postage fees!

In order to stay away from parts of the world wide web that were trying to part me from my money, I decided to start a blog — the first of many. Frustration runs high in my genes. Luckily, with the introduction of scheduling apps, I can now be part of the daytime world whilst having feet firmly stuck in the 'Dark Ages.'

RLS makes maintaining a family and social life difficult

Restless legs syndrome removes us from so much. Since the pandemic, things such as television have now become easily accessible, with all episodes of all seasons available at the press of a button, so being fast asleep when your favourite show is airing live is no longer an issue.

Unfortunately, it does still exclude you from family events. I have missed so many weddings, christenings, and birthdays due to the fact that I have — on more than one occasion — been found asleep in a chair in a corner, snoring my head off! It is humourous the first couple of times; after that, it is just embarrassing.

What I am attempting to say here is that I try to be a daytime person, even though my feet are fully planted in dark hours. I try to be a fully functioning part of my family, failing miserably, ending up asleep in my parents' bed alongside my own grandchildren.

Acceptance has been a struggle

Accepting what is has been the biggest struggle I have ever had to face. Waking up each evening to unbearable pain, being unable to do the things I love in life the most, losing myself to all my medical conditions, whilst the world continues to spin. Just existing instead of living.

I am disabled. I am not able-bodied anymore.

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