In the Eyes of the Carer

Earlier today, I asked my husband what RLS meant to him. He physically slumped in his chair. A distant look traveled across his face while he considered my question. His reply startled me.

Loneliness.

I often think to myself how RLS cuts its sufferers off from the world, turning our nights into days, turning us into the vampires of the medical world; mainly seen at night, rarely during the day, and never in sunlight.

Isolated nights with RLS

My medical conditions drove me to spend my nights away from my partner. RLS was the predominant reason. As I may have mentioned before, for the years we slept in the same bed, as my RLS started to rear its ugly head, my poor husband was kicked black and blue.

For the last 6 years, we have slept apart. It is outstanding how not spending those 8 hours together impacts your relationship. You may only be snoring in each other's faces and playing tug of war with the duvet, but it is all an essential closeness.

While I am pacing the length and breadth of the house, driving my poor adopted dog loopy as all he wants to do is sleep, RLS seems to drive a wedge into my head with a hammer, dragging out all the torturous thoughts I have ever had.

Halfway through the night, Ralph disappears off to bed with his Daddy, huffing at me as he walks past. The final thought of my companion is that even he has had enough! This leaves me, once again, all on my own with the same thoughts that haunt me most nights.

Early morning relief is short-lived

As the sun begins to poke its head from the horizon, relief starts to sweep across my weary torso. Depending on what time of year it is, 4 AM in the summer is slightly too early to celebrate the forthcoming release of my limbs from the RLS monster. During the winter months, 7 AM is just about the right time to start the jig around the lounge.

The tell-tale noises emanate from the bedroom. My husband says good morning to Ralph, who is enthusiastically headbutting him to get out of bed. After a night of mundanity, the loud laughter makes my heart smile, even more so when I have a 24kg Basset Hound launch himself at me, enthusiastically wagging his tail.

Unsurprisingly, the joy is short-lived. I can start to feel the RLS grip releasing on my legs, my body swapping continuous movement for unbelievable fatigue. We spend an hour as a family, drinking tea and having breakfast before my system can no longer cope.

Restless legs syndrome equals loneliness

Dragging my legs, which now feel like lead, off to the bedroom to undertake my designated rota allocation of sleep, the relief is palpable. My aching body sinks into the mattress, enveloped by my weighted duvet, which pins me with just enough pressure to reassure me I am soothed.

This is the routine in my home. Until today, I never realized how selfish my RLS makes me. My husband may have company from his hairy companion, but it is nothing like having me yak away about whatever topic is annoying me that day.

When I am asleep, his ever-present buddy curls up on the sofa and sleeps too. Occasionally, he comes and joins me on my bed, using my stillness to prop himself up into a comfortable position. This leaves my husband entirely alone.

For all involved, it seems restless legs syndrome equals loneliness.