Night needs with CFS

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Does anyone else have night needs with CFS? So exhausted can’t get out of bed to use toilet? Anxiety and thoughts of self harm?

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  • Posted

    Dear J

    I have never been so ill I needed help with going to the lavatory, but I do suffer from different kinds of anxiety and I have thought of self-harm, and abused myself in a variety of ways. Not knowing your full situation I don't quite know where to start but - 

    M.E./CFS is awful. I have had it for about 25 years, though the average is 1-7 years. Once I had a diagnosis things improved because I knew what to expect. I have been unemployed (or rather unemployable) since I lost my job in 2003. I am on benefits. Life is a b***h.

    If you are so exhausted you can't get out of bed for the toilet you are either: 1. Very ill or 2. Not making sufficiently radical lifestyle changes to adapt to your illness.  First and foremost you must have an adequate regime of "pacing?" (how much rest required for how much exertion.) For example atm I need 8 hrs of bedrest per day to sustain about 4 hours of mild activity (using my laptop on the sofa.) If I experience bad symptoms I try to work out what I did to cause it. Ideally proper pacing will mean you feel reasonably well so long as you stay within your limits.

    Anxiety and agitation in M.E. is caused by an excess of adrenalin: an overactive "fight/flight" response. Don't let it get the better of you. There are drugs which can control such symptoms. My first specialist put me on clonazepam for exertion-induced adrenalin and diazepam for panic attacks. In addition you can do deep breathing and hypnosis/relaxation tracks off YouTube, meditation, silence - use your own body's mechanisms ideally, but don't be afraid to ask for drugs.

    Self harm can come in a variety of forms, and you would be most unusual if you didn't have such thoughts. The illness literally causes your life to fall apart, so its not surprising if you yourself feel you are falling apart. I am a Christian and my daily relationship with Christ helps me to calm down and believe fundamentally all is well even if the worst should happen (because knowing God is the best thing that can happen to anyone!)  I have also had a therapist for the last 15 years. Some form of therapy or counselling - someone to walk with you through this dark time in your life -  is invaluable.

    Not knowing any more I can't comment further. 



    PS What benefits are you on? If you are having toilet needs and you live in the UK you are eligible for the highest rate of Disability Living Allowance. 

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    • Posted

      Hi P. Thank you so much for replying. I sometimes think I’m going crazy. I have a lot of support from family and friends and thank god for that. However it is difficult to explain to people who have never experienced the many facets of CFS and initially I felt I believed. Trying to get enhanced PIP is very difficult due to unpredictability of condition. I will try pacing again. Thank you
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    • Posted

      Hi J. Yes the benefits system is a nightmare, and I have not been changed to PIP so I can't comment on that benefit, except that its probably just another method of getting people off benefits!

      How long have you had the illness?

      For pacing you could buy this book which first helped me.

      However the rules of pacing are pretty easy to explain, and I must say, that you don't really have an option to "try pacing" as you put it: pacing is a must. It is the most effective of only about 3 things that are known to actually have a stabilizing effect on the illness.


      -The first task of pacing is to understand the 'money' analogy.

      Having M.E. is like playing Monopoly except that every time you pass go you get £20 not £200! 

      The money analogy works like this. Every day you wake up with a certain percentage of the energy of you had when you were healthy. Let's call that your daily income. That daily income is not enough for you to afford doing all the things you were able to do.  If you use more energy than you receive you get into 'debt' and the result is payback: bad days. If you spend only as much as you earn your 'bank balance' of energy stays in the red and you can begin to eliminate the worst symptoms. 

      The 2nd task of pacing is to keep a brief diary

      With most sufferers, the symptoms of 'debt' may not show up immediately. The delay between exertion and symptoms is a classical sign of CFS/ME. And it is confusing, because the cause of a bad-day may not be obvious. You might have over-exerted yesterday or several days ago. Therefore you need to keep a very brief notebook to record what you do every day, along with a score of between 1-10 of how ill you feel. 10 is healthy, 1 is the worst. As you keep an accurate record of your life, and the symptoms you suffer, you will be able to look back and spot patterns. You can spot the activities that have caused you to feel worse and not do those things; you can also see what your own personal delay is. Some activities you can't avoid, but at least you will have the reassurance that your symptoms are not random, and like your finances, they can be brought under control. 

      The 3rd task of pacing is to live within your means.

      Living with M.E. can be like a cycle of wild spending followed by painful austerity; proper pacing will enable you to live within your means. With proper pacing you should find that you stop lurching from one energy crisis to another. If you balance exertion and rest properly you can be much more in control of your symptoms. Once your body is on a level it can start to recover. But don't be lulled into a false sense of security: step outside your limits and you will experience push-back. Living within your means you will get some of your life back.

      Finally: learn to accept the lifestyle that M.E. imposes on you. 

      CFS/ME can't be beaten: if you fight it, you will lose. Take a philosophical approach, however, and you can construct a new lifestyle. Begin to accept the measure of health you are given. I do a lot of listening during my hours of bed-rest. I have audio-read many books and got to know a load of music I would never have known if I had tried to continue living my old life. Learn the beauty of silence and contemplation, trees, sunlight, birdsong, and the calm things of life. You will enjoy some things others rarely if ever experience. Draw near to God and he will draw near to you!

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    • Posted

      Hi P . I am blown away by your explanation. This is the first time I have truly understood the management of my condition. I can never thank you enough for your kindness and time. I am going to start this process immediately.. Regards
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    • Posted

      Good luck when you have to apply for pip philsey. If is a complete nightmare. I was turned down and went right through to first tier appeal. Still refused. I couldn't fight anymore so had to be defeated. Humiliation and exhaustion abounds. Atos lie and cheat. DWP just believe them and take little notice of the sick and disabled person. The whole system stinks.

      I have gone through the ESA one twice now. I know people who have been through it three times. I also know people who have never even been assessed for it or invited to apply for pip yet. You would think they would get round everyone on DLA before assessing people for a second time for pip. Same with ESA. Then there is underpayment saga going on. Thousands on wrong ESA. My friend just got over £3,000 back. And may be due a bit more.

      Sorry to go on but chronic illness and disablement appears to = second class citizen.

      Best wishes

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    • Posted

      NO indeed, you are right the benefits system for CFS/ME was always a postcode lottery and I have had the sharp end of that a few times in the early days.

      PIP I have no doubt is just another way to get people off benefits, coming as it does, from the era of the "skivers and strivers" rhetoric. 



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    • Posted

      Hi Phil,

      I just wanted to say how helpful I find your replies to people. I have suffered with ME/CFS for five years at varying levels, at the moment it is the worst its ever been and I am constantly exhausted. I am pretty sure looking back over the years, I have had the condition before it was diagnosed. It came on really bad after I was made redundant from my job, after which I developed a chest infection that took months to clear up. Following the virus, I was chronically fatigued and after a series of blood tests was finally diagnosed with CFS.

      I too am a Christian and try to see God in my illness, though it's not always easy is it, especially when you have always been so active. I know that I don't pace properly and continually boom and bust from overdoing things. Also I suffer with dreadful insomnia and some nights can get as little as three to four hours sleep, and not always in one go, which is debilitating because sleep is so necessary for healing of mind, body and spirit.

      I don't find meditation, secular or Christian, easy to do so when I am lying awake at night, I find myself rambling away to God and praying for sleep! 

      I will try and take some of the advice that you have written to others about pacing as I know that this is what I need to do. It's just hard to switch off my overactive brain and I am always 'tired but wired' as the saying goes. Mentally I want to do so much but physically I can't and I have yet to accept this is my life now.

      Anyway God bless you and I wish you as well as you can be with this horrible condition.


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    • Posted

      Dear Mart,

      Thank you for your encouraging words, and for sharing your situation, which sounds upsetting.

      The average length from diagnosis to recovery is 7 yrs, so you're not doomed!

      I know what sleep disturbance is like - I became an owl and have never really regained normal sleep patterns.

      I understand very well the agitation you describe when trying to rest. I have found a number of strategies that have worked for me over the years, though I admit there are times when I go "am I still using this method of calming myself, after 15 years and no better?"

      1. Challenge yourself with 'self-talk.' When lying in bed with my own particular distractions, such as thinking about a piece of music I am composing, or practising, I tell myself "Philip you are lying in bed so why are you composing? You aren't sitting at your laptop you're in bed so stop thinking about that." Or, "Philip you are not sitting at the piano so why is your hand practicing on the wall?"

      2. Rest of body mind and spirit. Using a stop watch on your phone, get into a comfortable position (I use the Alexander position but anything lying on your back is good.) Spend 10 minutes just stilling your body. Don't worry about your mind, let it buzz on regardless. After that, spend 10 minutes doing deep breathing, counting. I can manage 15 counts in, 15 counts hold, 15 counts breath out, 15 counts hold, but you can do however long you can hold you breath for comfortably. The key to this step is that you count, because the counting and breathing focuses the mind and stills it. You'll find your alarm goes off sooner than you were expecting. Then spend 10 minutes calming yourself before the Lord. I used to say outloud a few verses I memorized for the purpose: Psalm 23, Psalm 46, Psalm 131 might be the one for you. As you recite the verses prayerfully, put yourself into the Lord's care, just as you are.

      At the end of the half an hour you should feel a lot less agitated as you will have progressively calmed down the physical the mental and the spiritual. Try it and let me know.

      Blessings to you!


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    • Posted

      Hi Philip,

      Thanks for your reply. Wow, a musician, I can imagine that must make it very hard to switch off your mind! I like how you challenge and talk to yourself when in bed!

      I am a writer (editor) and graphic designer (or was in my last job), but thankfully I am still able to use my skills voluntarily designing and editing a quarterly magazine for a Christian charity. As with you and your composing, I find that I am writing things in my mind at night when I can't sleep - the best thoughts always seem to come then - is this God speaking to me I often wonder, as when I am not actually trying to think of something to write, it writes itself in my mind, I just wish it wouldn't happen at night when I am trying to sleep!. 

      I will try and put into practise some of the breathing techniques you have suggested though I always seem to find concentrating on my breathing a particularly difficult thing to to do as it makes me anxious focusing on breathing, probably because of panic attacks that I have suffered from in the past, during which hyperventilation was major though I know that concentrating on slowing down breathing is so helpful to bring the panic attacks under control. I  am still inclined to have the occasional panic attack, particularly if I have overdone things physically or mentally and/or have had little sleep for many days. I have read that with ME/CFS the body is constantly in flight or fight mode and on permanent alert, so this makes sense. I actually had the best night's sleep last night that I have had in days and I think perhaps this was because I did put in some proper resting yesterday. It's not an easy condition to manage is it!



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    • Posted

      No Mary it's a full-time job managing it, partly because no two days are ever the same. My body certainly tends towards constant flight/fight. I am on Sertraline for this and it helps prevent the damaging effects of the what I call the "massive mad-dog response" I get which is linked to confrontation. 

      I am glad you are able to use your graphic skills. Work is part of God's blessing - of being made in his image - it is a loss which is hard to live with permanently. Like, where does a weekly day of rest feature in the life of someone whose main activity is rest?

      God go with you.


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    • Posted

      Plus I meanr to say:

      When forced to leave off, have faith that your brain will actually be working on it when you are occupied with rest, and indeed your brain probably works better if it has that time. When I am eager to continue being creative but know I must stop I say to myself "leave it to the fertility of my subconcious mind."

      I find it helps me stop worrying about not being able to carry on doing as once I could. 



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