From Gresham College series that Mrs Sowester shared information from
Sleep Science : From Gresham College series... - Ramsays Disease
Sleep Science
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Ian123
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Sleep is about half way through the video. Sleeping is a science with professors that make simple sense of wiggly lines with some funny thinking.
Interesting about 4 different phenotypes of 'sleep disorder' amongst those with ME/CFS...
Wonder how we each experience this...
I can sleep for England (or Scotlsnd for that matter), day and night, and in 3.5 years, only once woke refreshed for 45 mins (actually after an op !).
Am gently working on refining sleep hygiene...e.g. no electronics after 6pm (a goal, not yet realised !), conscious relaxation after 'daytime mode', attempting to wake and sleep same time each day, and eliminating currently hefty daytime sleep, little by little. Creating rhythms with a little help from my phone alarm (different sounds meaning different things).
I'll see...perhaps take a leaf out of the 'Sleep Prof's' books and start reducing afternoon sleeps. Would be a liberation if possible !
Changing an appetite for sleep is a slow process with reducing afternoon naps by 10 mins a week as much as most rhythms will take.
Another name for sudden stop is crash which brings the link with time outside the energy envelope one more way of crashing, increased appetite for sleep not satisfied it's wired but tired.
Wishing you well in the search for quality over quantity of sleep.
Thank you so much Ian, I so appreciate the gentleness and realism of likely timescales.
And really helps me, to approach sleep and naps with as much tender care as keeping steadily within the energy envelope or very gradually increasing, when stabilised. Thank you so much.
As with all these things the pace of any change will be personal and steadily is definitely the word when searching for what can be tolerated.
I took part in the sleep research which was helpful in having indications of what was actually happening with sleep type.
That makes such sense, Ian, and so interesting that you took part in the research.
Very interested to learn any more from experience, if valuable to share. Such subtle factors create homeostasis, I feel.
Conscious of the value of early morning light, and so ensuring curtains open in the morning, however groggy the feeling...
Can I caution against altering the circadian rhythms by throwing open the curtains while groggy.
Taking time moving through sleep stages works in a similar way of enjoying a meal then relaxing while it digests rather than bolting the food and going for a run.
Hypersensitive of sound and light so for me reducing these helps steady the rhythms for all stages of sleep.
Really appreciate that Ian.
Empathise with and appreciate the experience of hypersensitivity to sound and light, Ian.
Such fine guides for gentle fine-tuning, to create greatest possible ease each day.
Helps me to think of sleep in parallel with the gentle process of eating and digesting a meal, thank you.
I feel perhaps a whole area to further fine-tune, when pain meds are balanced (as get rashes from meds so stabilising on lower dose before further
med review).
That is useful information. I have always wanted to have thin curtains rather than anything blacking out the daylight. I hate waking in a hotel room, for example, and finding it unnaturally dark. I like to wake with the daylight.
But now that I am sleeping in the daytime so often, as that is sometimes when the pain gets a bit better. It varies tremendously and that is making my sleep completely erratic over the past 13 years I have had this condition. Before that I was a full time graduate student with extra heavy studying and performing and rehearsing workload, as well as a household to try to run and a child to attend to.
My sleep schedule has been erratic for my whole adult life, as with young children, you also have a catch a few winks when you can situation.
Now that I am sick, how on earth can I manage to sleep at night and be awake during the day? The pattern may change for a day or two, but then it reverts to piecemeal attempts to grab sleep when the pain lets up a bit.
What to do about the curtain issue? My carer schedule is much better since I had to change to the present provider. She comes every day and evening at the same time. Although it would seem this would alter my schedule and be helpful to me, it is often just a chance to have a meal brought to my bed at 9:30 pm after lying here in agony for hours; or it is a disruption of my needed middle of the night to noon sleep duration that could have been had my carer not been scheduled at 10:30.
I need her here by then so I can have breakfast and be sure to take my am meds if I have failed to properly wake at 8 am when multiple alarms ring. I'm doing my best to get all this under control. If I don't have a visit by middle of the morning, I can wake in horrific pain because it has been too long since I had my last pregabalin. But if I am really out of it or half asleep when I turn off the alarm, my mind immediately loses track of the medication thing. It's even on the trolley next to me where I can see it when I turn off the alarm.
Do the rest of you have such problems????
Four sleep groups I move around groups thinking my link was how I was feeling .
When I feel bad I sleep lots then some busy days when more than tired I can only have broken sleep. Talking about food changing how we sleep was helpful because the family often gather for the evening meal around 8pm.
True that sleep cannot be managed in isolation with so many things affecting the balance. In my case pain management was part of a downward spiral of broken sleep reducing the pain threshold onto increasingly broken sleep, gradually changing pain levels gave an improvement in sleep.
Yes, empathising with the link between feeling and sleep. Realise so many influences to feelings, both physical ones (including pain levels) and natural emotions too, responding to life and others around us...if that feels familiar? And sometimes extra sleep for body and heart to protect space and encourage some healing (so I gently feel). Gently discovering, gently discerning.
Warmth and light, Slowmotion xx
Yes my friends we are not islands isolated there are emotions, feelings both physical and mental connecting into all that we know.
Appetite for responding held back for healing time in calmness.
gentle hugs RockRose xx
Loving all your gentle wisdom, thanks and honouring healing time in calmness, feeling the peace, Gentle hugs, Slowmotion xx
Lavender oil relaxes count less sheep. Any tips on sleep paralysis please.
I use lavender sachet (heads of lavender in a net bag) or spray a cloth with lavender water I have made from normal water and lavender oil. I am sure that if I had the oil next to me, I'd spill it everywhere. I am quite clumsy and getting more so.
I find that lavender can partially relieve a headache. Also pulling on your ears, and massaging them can really help a headache. I have never found either of these to totally take a headache away, though. I use lavender oil for many things, as I have a no chemical home due to my illness, sensitivities, eco issues, and my budgie.
N.B. If you spray or use chemicals around a bird, they can be extremely toxic. Especially anything sprayed, as birds have different types of respiratory systems and airborne particles will kill them in many cases.
I think also that anything which produces a pleasure response can help pain and fatigue. I have even resorted to getting a spoonful of chocolate spread when desperate for pain relief. It helps for a few minutes. But a healthier option is to use scented oils of something you are not hypersensitive to. They do produce pain relieving chemicals in the brain.
Would love to get more suggestions like this.
Sleep paralysis is frightening the first time it happens, I have only experienced two episodes myself the NHS have this information nhs.uk/conditions/sleep-par... wish I could help more especially if this problem is ongoing.
Thank you soooo much! I have needed this info for years! I have posted elsewhere on my experiences with this, and the total lack of comprehension or interest shown by my doctors, despite telling them it was occurring nearly every day.
I also followed the links on that article and there is an incredible lot of wonderful stuff on this link.
I have not had a chance to look at it all yet.
No sleep afternoons how can this be a truth what to do without the way of happening.
True after four pm is time for nightdress and think again of sleep.
The truth is that your own personal experience should be what guides you SophiaG, happy then change nothing.
We need to constantly remind ourselves that these doctors do not live in our body and experience the various nuances and patterns we experience.
We are all so different and we must trust our best understanding of the basic information as well as weighing any new information we come across, and then the final test is how it fits with what we know about ourselves.
It seems to me that this illness produces some of the most incredibly insightful and helpful people I have ever come across. The experiences we have and the problems we face are like a daily training course and obstacle course we must learn to navigate. When we make it through in one way or another, we learn, and add to our wisdom that we can share.
I appreciate all of you so much!
Thank you. I have already watched the part with Dr. Newton, and will watch the part with the other researcher tomorrow. I am realising (facepalm moment) that I use up far too much energy reading and networking about info on ME and Fibromyalgia. Although it has added to me feelings of 'knowing what's wrong with me' when doctors have been worse than useless, I am making my PEM worse by doing so much so often and for so long at a time.
I have a very active mind and a lot of curiosity about many things. I am trying to learn to stop and rest and close my eyes, but when my body will not rest because of pain, and my mind is wanting to scream from the immobility and agony, my eyes (as long as I can see through the blur) can still find many things to do.
I am trying to organise ways of managing my 'energy envelope' and very gradually doing some useful things. One of the important suggestions is to rest from visual processing, on which I am heavily dependent.
However, I find that my very poor distractability factor keeps my mind jumping off track when I try to listen to an audio book or something of that nature.
Being a musician, I find that music quite often becomes an experience related to my prior work and knowledge of music, instead of enjoying what I hear. I can only listen to some types of music for relaxation, and even then I get restless if I am in pain.
Sometimes BBC Radio 4 has enough content of interest that I can lie still and get my mind off the pain. But I can think of a thousand things I want to do on my computer, my kindle, a book to read, Sudoku, and many practical things. (sigh)
I find it hard enough to read and retain anything I read visually, but audio things unless they are half an hour or less, and very well organised without a lot of rambling into boring areas, will lose me almost every time, and if they don't totally lose me, I have black holes of loss of concentration, so that the information is not joined up. This necessitates pushing the replay or backtrack buttons, which you can't do with radio, for example. It is immensely frustrating. I want to bang my head against the wall.
Yesterday I spent the whole day and evening in a state of agony with eyes closed trying to get some sleep. I had almost none during the previous 24 hrs. I did not get to sleep till late evening, and then for about 2 hours. But I think i did benefit from lying with my eyes closed, despite the pain. I was in too much pain to even tolerate having gentle soft music on. My budgie must have been bored out of his tiny skull.
With sleep, the problem is threefold:
1. When I can't sleep due to pain, it's like I would do anything at all to get my mind off it. The last thing I want is to lie here with nothing else to do except feel it for hours and hours. (I am not a wimp. I don't mind feeling what I feel, but the duration of it turns that experience into hell, as I am sure you all know.)
2. All my life I have enjoyed sleeping, and looked forward to my bed and curling up like a cat for a nice relaxed sleep. But now, when I try to sleep, the pain is magnified for me by my lack of external focus and distraction, plus I wake up in more pain and more exhausted feeling than when I went to sleep. This is a dreadful opposite of the great refreshed ready to greet the day feeling I had all my life on waking.
3. For several years now, and starting shortly after I was diagnosed with Fibromyalgia, I have suffered from sleep paralysis on waking and sometimes while falling asleep.
I never knew what it was and didn't think to call it that. I only today found a link to it, from something that was in one of the links you people posted here. I am now ready to punch the lights out of every doctor I ever patiently described this horrible problem to, who either said nothing at all and moved the conversation on to other things, or who told me it was a mental health /psychological issue.
I know that I was having problems sleeping due to pain and other factors when this began. The information I found was on an NHS website! Why didn't someone care enough to take 5 minutes to find that and direct me there if they were too busy or indifferent to help me or refer me to a sleep specialist. I have even asked to be referred to a sleep specialist, and again, was blanked by NHS doctors.
In my horrific tribunal hearing for my first DLA application, I was asked if I can get out of bed in the morning, as I had talked about this problem (without knowing what to call it) in my application form. The doctor in the hearing demanded that I answer the question, "Are you able to get out of bed in the morning?" I kept saying "That depends on what you are asking me, exactly" and describing the way I wake in a lot of pain, especially needing to use the toilet, but my body will not move, and I cannot with my will make it move. I have had this experience nearly every day for years.
I then said that when not having that experience, I am able to get out of bed, as I have no physical impairment to the function of my legs and arms. The doctor just kept harrassing me and demanding a yes or no answer.
In a previous tribunal a few years before (that one was for ESA) I told the judges about this experience, and they said this, "Well, one of the tests is whether you can pick up a piece of paper from the floor. If you are unable to move then you could not do that at those times. That is all we need to know." He marked his paper and told me I would be approved for the benefit. However, no terminology was used, so I had no idea what this da**ed experience is or that it can often be a medical condition as opposed to a psychiatric one.
Thinking back over my life experiences, I have often had sleep paralysis experiences when I am very sick, e.g. with pneumonia or a kidney infection, but especially respiratory illnesses. I have also had experiences where I would be aware of being asleep but need to go to the toilet or be unable to breathe during the respiratory illnesses, mostly.
I would struggle with all my might to wake myself up, and finally do so after what seemed like hours (probably only minutes). I would wake with a loud gasp or cry and feel like I'd been snatched from the grip of death if it was a respiratory illness, or if it was needing to go to the toilet, feel like I was on the verge of wetting my bed.
After finally waking up, I would be so thoroughly drained that I felt I'd used every drop of energy to wake myself from that state. My head would be pounding, and I would often meditate or get medication, try to recover from the terrifying experience, and then go back to sleep, if I could, to try to recover from it.
But sometimes if it was with a respiratory problem, maybe I was having sleep apnoea episodes during those times, accompanying my respiratory illness, especially if I ended up being flat on my back in bed. I would be afraid that it would happen again, and sleep sitting up, or on my side, to avoid a chance of it happening again with the accompanying feeling of pressure on my chest stopping my breath.
It makes me really wonder why there are no really thorough discussions of all the related problems that are often linked to Fibromyalgia and ME. It is all scattered in a million places, and doctors know so little about things like orthostatic intolerance or sleep problems. They only reach for the prescription pad and give you pain meds or antidepressants, or else tell you once again that all your tests came back normal, when in fact they didn't do many tests, and none that would indicate anything about these problems.
We need one charity to be generous and thorough enough to compile a list and put it all in one place without any extreme rhetoric against other organisations which are bio-medical researched based. (But that's another topic altogether which I don't want to discuss because I know everybody is desperate for answers and good help and they think they have the right track. I think with research such as that from Lipkin and Horning and Montoya, we will eventually be all joined up in our awareness and understanding.
Until then, I would have appreciated some basic things like a doctor willing to say to me, "Oh, what you are describing sounds like 'sleep paralysis'. I will do some checking on that and get back to you. It must be terrifying." Does that seem too much to ask of a physician in charge of my health care?
From you fellow sufferers, I would love to know,
1. Do some of you also have these experiences (all mentioned above)?
and
2. How do you handle the energy in your spirit/personality that wants to do something and enjoy life, when your body is in pain and needing you to lie still and close your eyes?
Note: I used to meditate every morning for at least an hour before I got this illness, now I have lost that capacity. My brain will not focus at all if I try. I can mindfully focus on small activities, but I cannot be still and close my eyes or keep them open and meditate any longer. I have not done it for several years.
Thank you all for everything you have been posting here. I am slowly making my way through the things I did not know about before. I have had an abysmal two or three weeks, which is why I haven't written much lately or replied to much except a few short comments.
Today was much better, although I have not had enough sleep, but I did get two hours this afternoon.
I send you all my warmest thoughts and greetings and gentle hugs to those who like hugs.
Learning how to cope with personal challenges while finding a measure of acceptance from ourselves takes heavily from the energy we have, taking away isolation seems as though it gives a little of the strength back again.
Finding the balance in a constantly changing condition is Herculean task be kind with yourself doing the best with the information and resources available at the time.
Thanks! I have that angel on one shoulder and devil on the other problem most of the time. Angel wants me to take care of myself so i am not so ill. Devil says, "heck with this stupid illness. You need to have a decent life. You are going to be more miserable if you stop and try to rest." They are both correct! What to do?
I have made a career in the past by working hard, being unremittingly precise and constantly learning actively, applying all my knowledge in my work.... music success demands note perfection and technique perfection. Now, I have to learn that I can't do things this way. I need to just stop and let it go.
When I let it go I lose it, such is the cognitive problem. Then also, I make so many mistakes now (doing art instead of music) that it takes me forever to complete things. I often lose my work because I forget to save or make a huge error while trying to improve something or saving it. sigh
It's so frustrating. And I want very much to stay active and do things. I have so many ideas, so much I want to try and experience. So much to learn still!
How can I break these habits? I am trying to be kind and forgive myself for putting myself in this hopeless roller coaster ride. But even when really being good, it's still totally unpredictable. It does not give me confidence to even bother with pacing, sometimes. But I know that without it, I will continue to get worse and worse.
My carer says I am getting worse since she started caring for me back in Jan or thereabouts. This is worrying, although I do hope that a new doctor will help.
A balance we can live with, we are the same people we once were only the circumstances have changed. Adapting for circumstances and prioritizing what is acceptable payback for allowing the person we were an identity.
It's hard living in your own skin if you cannot stand the company, some kind of pact between the angel and devil, because there is only loss in battle.
The one that loses least claims a victory but when the battle is with yourself what is a victory worth, a personal decision that is neither right or wrong as the consequences are also personal.
Yes, I have learned to be gentle with myself in many ways but this work hard play hard mentality I have really gets me in trouble. I'm going to keep nudging it to the safer zone. You are very kind and wise in your response.
Keeping a life within makes facing each days challenges possible
Yes, we must nurture the being inside us, if that is what you mean. I know that if I had been more dependent on social things, or work, or possessions, or travel... I would find this illness much more difficult. I loved my work with all my heart. But it was never the core of my being. That is something not attached to any of these external things.
Maybe this illness often makes people realise that and live within that awareness, so that we can fight depression and lost hopes and dreams every day, as we must.
Exactly that awareness is survival a small light in the darkest days a safe refuge within ourselves appreciating what remains because we fought for it.
Ian, your words have really touched me. I hope you don't mind if I send you a virtual hug. If you prefer, make it a bouquet of your favourite flowers or balloons or something you love to eat. I actually would send a real thing if I could. I so value you and everyone else who contributes here with open hearts and spirits.
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