just found this poem I wrote

[serengazer]

Hi all

I don't know if this is appropriate but I just came across this poem I wrote a few years ago, during a really bad spell of RLS. I am on meds that work now, so it is not as bad. Please pass over if not interested. I just remember wishing someone could understand so I wrote down my experience...

RLS Reality

Little squiggling worms

Minute tickles and ghostly sensations

Crawling through my feet, gathering in my ankles,

up my legs, encasing my knees

Just stop!

But no, they

march onward...

Encircling my bladder so I can feel it

like a perfect little sculpture in my belly.

Ascending my torso, running up my neck and chasing down my arms

circling my fingers like millions of little creatures

Wiggly, squiggly, tickly

I jerk, pinch, walk, wail...

I want to scream, to die, just die, please let me die!

It’s bad enough in the day

Oh but day is nothing compared to the night

In the still darkness of the night

with all the world quiet, sleep slipping over my skull,

Even the dog is gently snoring, twitching, dreaming.

Soft pillows, gentle piano notes, darkness, doped...

Tendrils of tickles, tiny tingles, tormenting,

relentless, restless, remorseless

running up my muscles and sinews

like mice scampering through a silo.

Everyday, since my memories began.

Relief in the guise of a spanking, so I could cry myself to sleep

Lots of people survive pain

and endure RLS,

And I might be OK with a good sleep.

If I could slip into oblivion at the end of a long day

Restore, regenerate and dream

Dream that tomorrow is a new day

A day that could be better than yesterday

then maybe I could survive

Then maybe you wouldn’t look at me with doubt and pity

and maybe a little bit of judgement too.

But even sleep eludes me,

So I watch the evening approaching

the sun setting

the traffic tapering off

Bedtime beckoning...

Please don’t suggest any routines

Don’t ask me what I’ve tried, just in case I missed something!

I have been tutored in the art of sleep

Drugged into the heart of sleep

Cried myself over and over to sleep.

My sleep centre is screwed.

Sorry if it is all invisible to you

But it is very real to me

So if I look at you blankly or even coolly

Or just turn away from your pep talk.

When you encourage me to

Just get out,

Don’t give up or in or whatever.

Write, draw, just do something!

Please forgive me,

But you don’t really understand

You can’t really understand

And I no longer expect you to.

Instead I forgive you.

Teresa Serenith

Oct 4 2020

[Pippins2]

Well done I am sure we can all relate

[SueJohnson]

Love it !!!

[serengazer in reply to SueJohnson]

Thank you Someone without RLS must have given me some advice Haha

[Jelbea]

Hi serengazer - So many who read this will understand exactly! It is so talented of you to put all this suffering into such expression and to know you have come out the other end. I think sometimes one of the hardest things is that others around you have no idea of the torment and I am sure doubt the enormity of the suffering.

I am glad you posted this. Perhaps if we could get some of the GPs or neurologists to read this it would make them think again (or perhaps not). Thank you again

[Goldy700]

Well expressed in a way that only poetry really can. Thank you

[Jumpey]

Powerful and so relatable.So glad you now have peace.x

[Merny5]

fabuous!

[Theonlypetied]

Wow! Thank you for sharing your poem and your heart with it.

[Kakally]

😔👏😥🤗

[Simkin]

Well done. We all understand those sentiments.Your poem ought to be sent to all those "medical experts" who (in the newspapers) tell their readers on a daily basis that the way to be really healthy is to sleep 8 hours a night.

Don't they know about RLS and how we would all love to have a long and peaceful night's sleep?

[HipHop1972]

Hello Serengazer. I think it was very appropriate that you posted your poem wonderful as it was and I think it reflected the pain, torment and hopelessness that all of us who suffer from RLS feel. People on the outside think they are being helpful with their incessant suggestions about what might help and what they’ve read somewhere or that they get achy legs sometimes but don’t realise that it’s not the same and you just nod when you want to shout at them to stop go away and leave me alone as your not helping. All this you wrote down wonderfully in a way explaining the emotions so hard to explain. I am so pleased also to hear that you are now in a much better and happier place. I would also hope that you continue with your writing as I believe you have a gift and a talent for it.

With very best wishes Hiphop1972 😀

[serengazer in reply to HipHop1972]

Thank you so much I am trying to get the courage to share my musings but my I think decades of not being believed ( I have also had Fibromyalgia since 12) have made it hard to speak out An learned protection! Thank you for these encouraging words. T

[HipHop1972 in reply to serengazer]

Hello again Serengazer, I’ve just looked up the other condition you’ve had since age 12. I had no idea what Fibromyalgia was and it sounds dreadful with little you can do to ease it apart from painkillers so I can’t even imagine what that combined with RLS was like to live with but guess your poem was more to do with that than RLS. Again thank you for sharing that with us all.

Very best wishes Hiphop1972 🤗

[serengazer in reply to HipHop1972]

I wrote about the Fibro as well It can be a toss up which is worse depending on the day but I think for me I can handle huge amounts of paint but the RLS is craziness!!

[HipHop1972 in reply to serengazer]

Well you shouldn’t have to suffer that amount, but you are a woman and you ladies are said to be able to take more pain than us Men but even so!! I’m sorry but thought you had RLS under control, just don’t know how you cope with both conditions.

So if you don’t mind I will keep you in my prayers as I do for all who are suffering 🙏

[serengazer in reply to HipHop1972]

Fortunately I was able to find a doc willing to put me on low dose methadone It has changed the RLS part of my life!! Prayers always welcome!😊

[HipHop1972 in reply to serengazer]

Well you are fortunate in having an enlightened doctor, few and far between in the UK unless you pay to see a specialist privately, which is where I’m at. Take care and I will 🙏😀

[Joolsg]

Very moving. That is fantastic. 👏

[michaeledward]

Very powerful! I don’t have RLS and I thought I understood what all RLS sufferers were experiencing. But having now read your poem, I realize that this condition is many times more torturous than I imagined. You and everyone with RLS are in my prayers for relief from this condition.

[Hidden]

Well done, when so difficult to express the intolerable relentless reality of this condition. I can only wish for a simple night of quality sleep again which has escaped me in the past three years where out of nowhere sleep became something I took for granted. I feel your pain and wonder why so many of us have this condition. Take care

[RLSLearner]

Thanks Serengazer,

Are you still using Methadone successfully?

[serengazer]

Yes, coming up on my full second year and working like a charm. Need to keep it steady in my system, low dose but take on time! I wrote that poem a few months before I started methadone, and now I have almost forgotten what my life was like!

I so hope and pray that the medical world pays attention. It is life changing!

[Fingerandus]

so so real tears are my companions

[WelbyB]

Thank you for sharing. I understand. Misery loves company. You are a good poet.

[Loopylegs]

Your poem describes an accurate account of living with rls x