Question: I am 57. Post menopausal. Had severe ME/Chronic Fatigue Syndrome nearly 20 years. Unable to work at all during the whole time.
During my 20 years of ME I have had a whole variety of sleep problems. Sleep Paralysis, Restless Leg Syndrome, waking up hourly, then 2 hourly, then every 15 minutes, then every half hour. Severe restlessness. Not sleeping regularly for 1, 2, 3 days. A whole range of changeable sleeping waking patterns that have been very severe and very unpleasant. Fevers, chills.Just before my menopause started in my late 40’s I began with 1, then 2, then 3 nights straight without any sleep at all, and then maybe 5 or 6 hours sleep during 60 hours (3 days). I felt dreadfully ill, drained, nauseous the whole time, chronic headaches, balance problems, poor concentration, unable to read, watch television. Taking numerous painkiller for chronic headaches every day. Severe irritable bowel syndrome symptoms.The above symptoms gradually got worse and intensified over the years as my sleeping patterns became entrenched yet changeable in their timings.Effects of sleep deprivation; balance problems, severe headaches, unable to absorb/understand new information, unable to hold a pen and write, feeling very low, depressed, too weak and unsteady to shower, wash hair. Continual sleepy whilst awake. Feeling wretchedly unwell. Feeling unsteady and sickly and needing to lie down even though unable to sleep. Restless. Restless leg syndrome. Agitated. Bad tempered. Impatient. Irritable. Poor appetite. Also, very hungry at times and continually snacking but only small amounts. Not safe to leave home because balance so bad and too weak and ill to get dressed. Constant, permanent severe headaches lasting days and stomach upsets and severe constipation. Totally being unable to eat anything. Losing control of bladder. Too exhausted to get off the bed to go to the toilet. Dizzy. I drop things, burn myself on the oven, toaster and microwave. I accidently cut myself when trying to chop things. I am prone to falling over and having nasty painful falls. I fell out of my bath losing my balance. I struggle to follow speech and instructions.Over 20 years I have noticed that during the day and night I get times of overwhelming sleepiness, but also suddenly at set times which do change, I get a sudden spurt of energy and wakefulness. This is I have realised deceptive because I call this ‘false energy’, If I have not slept for 24 hours then it is unwise to start rushing around doing things because Of this spurt of energy. I make things worse by over over exhausting myself when I am already tired through sleep deprivation. I pace myself and use my mind to make decisions on what I do rather then rely on changeable misleading spurts of energy that cannot be in my best interest. If you have not slept in 30 hours then common sense dictates you should take it easy and be careful. I am more in danger of accidents because of the sleep deprivation/erratic sleeping patterns.For the last few years I have been unable to sleep through the night every night. The earliest I get to sleep on a good night is 5am.Then I sleep all day till the earliest 4pm and the latest 10pm. I have been sleeping 12-16 hours in the daytime. However, I also get sleepless nights and days. So I will regularly get days each week where I am only getting 2 hours sleep per 24 hour period.How much is my sleep debt? It must be a hell of a lot. I am now not able to fight the sleepiness and the severe symptoms like I could years ago. I have no choice now but to be lying in a blacked out room most of the time. That is usually 16-20 hours every 24 hour period.I am now
continuously sleepy and feeling wretchedly ill most of the time. Every day I wake up nauseous, severe headaches, excessively sleepy and weak. I have deteriated since my sleep reversal has stuck.Since I have totally stopped being able to get sleep at night. I have become in myself much much weaker and have to spend 16-20 hours in bed because I feel; dizzy, unable to stand, walk, nauseous, severe headaches, especially on waking, mentally weary the whole time. Unable to leave my home because I am so unsteady and feeling the need to lie down because I feel I will pass out if I don’t. I am severely debiletated. I often cannot shower, wash my hair, get to the toilet because of the severity of feeling weak, dizzy, unsteady. I have difficulty understanding information and get muddled and confused easily. I cannot do 2 things at once. I get flustered easily. I have severe light sensitivity and my blacked out rooms are not dark enough for me. I can’t bear noise or chatter.Most of the time I am not depressed as such but I do get a bit low because I get sick of continuously feeling ill. It is now nearly 20 years. I enjoy being alive and don’t want to die. The little things I can do I get great pleasure from. However, I do frequently feel I’ve had enough and think about dying. I have a guinea pig and he is a great comfort and source of joy to me. My Peanut sleeps in naps, mostly with his eyes open. I’ve noticed he often seems tired too! As he often yawns!! I think this thinking of dying constantly is my ‘get out card’ that I know I have if I want to use it. But I don’t. I enjoy living so much but suicide still preys on my mind a lot. Especially when I am in a lot of pain or have not been able to sleep for a day or so. There is no doubt in my mind that since my insomnia has taken root permanently these last few years and I can only sleep in the daytime that my overall condition has deteriated. I regularly, frequently on a weekly basis am not able to sleep for 48 hours, perhaps if things go well, getting just 2-4 hours sleep in 48 hours. The other week after being unable to sleep for 2 days I slept in the daytime for 24 hours!This is not normal!My doctor regards sleep as a personal management issue. He seems to regard my only being able to sleep in the daytime as a lifestyle choice! He does not realise or recognize how severely I am suffering with the culminative effects of sleep deprivation and the constant chopping and changing of when I am able to sleep in the daytime. Because he does not know how to treat the symptoms, not even willing to acknowledge them as a disorder of some kind it is dismissed.Here in UK there is a lot of publicity about sleep apnea because it is treatable but no mention of other sleep disorders and insomnia is just regarded as the common cold; nothing one should bother the doctor with.I wonder how many people have committed suicide as a result of enduring insomnia for years on end. Often, when I have been awake 30 hours or more suicide by taking an overdose seems very appealing. However, as soon as I have been able to get some sleep, even just 2 or 3 hours I feel much better moodwise and have no desire to die. If I told a doctor this here in the UK they would think I was anxious or depressed and miss the obvious. I have a severe sleep disorder and its making me sicker and sicker by the months and years.