The Reason Why

When I was asked to recount the effects RLS has on me, my life, and the world around me, I questioned why I had been approached. I am not a trained journalist, and I have no A-levels or degrees to my name. At that point, I was just a dog mom writing about her everyday struggles.

After I agreed to write about RLS, I felt a tremendous sense of pride. Someone had found my blog and thought me worthy. I had a chance to help others out there wrestling with restless legs syndrome (RLS), all of us awake till the wee small hours because our existence is being whipped into a frenzy by a condition that feels like it has taken over our bodies.

RLS can make us feel out of control

Does everyone feel RLS the same, but also differently? The sensation that builds in our legs makes us move them, regardless of wanting to or not. My interpretation of this is that my brain is controlling everything whilst my consciousness is unaware. As RLS can make me feel very much out of control, I use that analogy in my writing.

Thankfully, many of us are lucky enough to have our RLS symptoms controlled by medication. Cast your mind back to when you first noticed that your legs were effectively 'moving by themselves' and you had no way to command them.The bewilderment I felt that I could not change or ward off the reaction was positively palpable.

Medication can come with side effects

Medication can have side effects of its own. I was prescribed pramipexole for my RLS. The utter relief I felt when, after 2 or so years of sleeping on the lounge floor (my husband at the time was knocked black and blue every night by me kicking him) I actually fell asleep before midnight and stayed asleep till 9 AM (with no tossing and turning, no pacing the floor, just pure sleep) made me feel like I had been released from my prison.

My side effect is that I have impulse control issues when it comes to spending money. Having never read the slip of paper that was inside my tablet box, this is a nugget of information I found on this RLS community. We are always helping one another out.

Increasing my dosage is not something I am willing to do currently, as I can just about cope with the excessive groggy feeling I experience in the morning. Breakthrough movements are not frequent yet. Coping with them just reminds me not to be complacent, as I still have this condition buried under a pile of pills. RLS is still there, covered by a gilly suit.

We are all together under the RLS umbrella

This community of ours has been developed to enable us to help each other. Questions may arise that we as patients may not know the answer to, but I am sure we have people who do know or know who to ask.

We are all individuals here, brought together under one umbrella, sheltering from the abject misery that can be RLS. We are also here to celebrate when one of us breaks through their condition, becoming someone who has RLS, rather than someone ruled by it.

Are you interested in being more involved with the RLS community? Email us at contact@restlesslegssyndrome.sleep-disorders.net to learn how you could become a community advocate like Nikki.