Insomnia

Many years of restless leg syndrome, plus two weeks in intensive care, plus surgery which means I must sleep sitting up, have left me with no proper sleep pattern at all. I sleep for a few hours now and then, day or night. Fortunately I'm old and it doesn't matter when I sleep.

I went to sleep at 10 15 and I've woken again at 12 30. I'll write this for a while, have a Quorn bacon sandwich, then try to sleep again.

Restless leg syndrome is a horrible problem. For those of you who are lucky enough to not have it, I know it sounds like no great problem that you need to keep moving your legs, but in severe cases it means no sleep at all, for days, even weeks, on end. No matter how exhausted you are, you must keep moving. For a long time I was only sleeping for an hour and a half, in three separate half hours, in a night. The rest of the time, I was walking, walking. There are meds that work for some people, if you are lucky enough to have a sympathetic GP. I'm one of the lucky ones, but many people are not. But disturbed nights have become a habit.

Intensive care wrecked my sleep pattern as well. There is no day or night, no natural light, lights on, staff busy, all the time. It can't be helped, very sick people need 24 hour care, but it played strange tricks on my mind. That plus the drugs they gave me lead to nightmares, which lingered long after I'd gone home, so sometimes I don't really want to go to sleep.

It was a very frightening experience and I'll never be the same again.

Now surgery. I have had my esophagus removed because I had cancer. (I hope I'm right in using the past tense) My stomach is now in my chest, and it no longer has a valve at the top. So the only thing that keeps the contents in place is gravity. If I lie comfortably flat the contents will spill, and I will inhale them. That is terrifying, so I sleep propped up. Not too bad, but never really completely comfortable. I remember when I slept blissfully on my stomach. Never again.

I thought I'd put this on all three of my Health Unlocked Community sites. After all, most of us are battling more than one problem, and the treatments often conflict. For me, the problem is the meds which help my restless legs are Dopermine agonists and the meds which help me swallow are Dopermine antagonists. So shall I choose to sleep or eat? Actually it's a matter of getting the balance right,

My main problem is I spend my nights on my laptop instead of sleeping, which is my own fault.

9 Replies

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  • Hi patchworker, my, you have some awful problems you are dealing with. You are a very brave person. Most of us just have RLS to deal with, altho i know some have more health issues. I am one of the lucky ones to only have RLS to deal with. well so far in my life anyways. I wish i knew the answer to your insomnia, another problem i dont suffer with, altho i have had an odd night here and there where sleep evades me.

    Thanks for telling us your story.

  • Hello patchworker, I don't comment a lot on here but your story moved me. You sound like such a strong person, and I am so sorry you are going through all this. I hope you find the balance you are looking for ((( hugs ))) x

  • My sympathies and hugs to you, patchworker. Surgery for oesophageal cancer is drastic, and takes a long time to recover from. Most after effects are from the massive anaesthetic which do screw with your mind. And on top of all this you're trying to cope with RLS - i too send my best wishes to you.

  • sending ((hugs)) I am an ovarian and cervical cancer survivor, so I will say you are`a`survivor, too!! :) Use the`past tense all the time, even on bad days, when it comes to the word cancer. It is`a positive thing to do for your brain. After surgery, any kind, we never get sleep. HOspitals`are not for sleeping, that is for sure. You have had major, major surgery. Which dopamine antagonists are u taking? some are better than others for that balancing act you are doing. :( Please keep us posted. Cancer sucks, just took one of my best friends from me, but she was as strong as you are. She had to have part of her intestines out, but started with ovarian cancer that came back twice on her. So, I am wishing you the speediest recovery, and can I ask what meds you are taking for RLS? Do they keep your legs quiet? I hope so!

  • Thanks for the hugs, and good wishes, everyone. I'm not strong really, when cancer happens you're just swept along by events, you don't have a choice. Once you've been to your GP you just do as you're told, and keep hospital appointments, you're too frightened to do anything else! Isn't that true,nightdancer?

    I've been for my routine check up today, and I'm still clear!

    I'm on pramipexole 0.52mg prolonged release tablets for my RLS and it's working well at the moment. And domperidone 10mg for my swallowing, I only use it when I really must because it upsets my RLS. but sometimes food gets stuck and I have to take one.

    I take the pramipexole morning and night but I have to eat before I take it or the food just won't go down.

  • My goodness you are such a strong person and have been through a great deal. You have so much to deal with. I have RLS badly and insomnia with it but what you are going through is horrendous.

  • It was difficult to read your story because it's hard to imagine

    a real human being going through so much at once. You seem

    to be handling it with bravery, have a good attitude.

    I really hope to hear better news from you soon. =)

  • Dear Patchworker,

    I have only just seen this and could not believe all that you have been through and go through on a daily basis. You have my utmost sympathy. I was with my mother a few days a week for a long time when she was in intensive care and saw in detail how it worked so I do understand a little of what you are saying. I also heard recently on the radio someone talking about how their stay in ITU really affected them quite negatively afterwards so you are not alone there.

    Unless one has experienced staying in ITU for a goodly while, one does not think about the negatives only that it is a good place to be when so unwell as you get 24 hour attention. My mother did survive her lengthy stay in hospital and in ITU although she had periods of being very disturbed which was frightening for the family. She has become disturbed since and had to return but at the moment is happily living alone with the minimum of help at 89 years old.

    I shall think of you next time I have a whinge. Thank you for sharing. I hope it helped you a little to write it down.Do keep in touch. You have definitely found an inner strength from somewhere and I do admire you.

    Giant gentle hugs to you

    Kaarina

  • I thought of you this morning as soon as I woke up. Your story obviously had a great impact on me. I wonder what kind of night you had and were you tap, tapping on your laptop. I suppose my mother is one of the lucky ones as she does not remember anything much about her long stay in hospital, but I most certainly do as I spent so m uch time there. I can only surmise that as it was so horrenduous she has blanked it all, the best way if possible, but I will never be able to do that. I wrote a diary of those events which did help me at the time. I am so sorry that you cannot erase that time in ITU from your memory.

    You look after yourself, keep warm and safe,

    Kaarina

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