In the middle of the night.....

Sue
Sue Member Posts: 40
edited 31. Mar 2017, 13:18 in Living with Arthritis archive
When you can't sleep,because of the pain, everything seems so much worse in the middle of the night. I think I have little panic attacks as to what the future holds for me. I can't remember what it was like to go to sleep and wake up in the morning without waking and pacing the floor at stupid times in the night. I suppose I have to accept that never again will I have a full, uninterrupted nights sleep. It's just so exusting.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I think we've all experienced this so can empathise. Night is usually the time that the fears and worries hit because the world is a much quieter place with no noise or distractions to take our minds off our concerns and troubles. Yours is a recent diagnosis so no wonder you are feeling like this and there's every reason that you should. Your life has changed, is changing and will continue to change and there's very little that you can do about it. That's enough to pull anyone down and it does - even us old hands.

    A diagnosis is what triggers these thoughts and fears which further highlights just how little good health prepares one for setbacks. Nobody knows what the future holds, no-one ever has or ever will but good health blinds us into thinking we exert some measure of control over our fate.

    There is also a grieving process involved with diagnosis, the denial, the anger etc. so it could be that you are beginning to make your way through that maze but working from the inside to find the exit. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • palo
    palo Member Posts: 239
    edited 30. Nov -1, 00:00
    a few years back I watched an episode of Babylon 5, and it was called the hour of the wolf, one of the lead characters described it as the hour when everything is at its darkest and you are at your most afraid and vulnerable and I really identified with it.

    We all experience this at times of our lives when things are hard and more challenging than you can imagine, when we face real or imagined fears and have to find a way through it.

    I have had many such nights, one lesson I have learnt is that nothing in life stays the same, there is good and bad in everyone's life, we all have to deal with dreams destroyed, life-changing events, loss and tragedy - it is the way with life.

    The most we can do is endure, try to hang on to what matters to you, treasure that and try to find enjoyment each day, that is as much as we can hope for. The future is never guaranteed, it is a gift we have to appreciate, the hard part is letting of the past - its expectations, hopes and ambitions....

    I have had my worst fears realised and not on other ocassions, I no longer worry, I cannot influence the crap the universe has in store for me, I can merely hope to get through it.

    Love your life, your family and friends and that should help.
  • palo
    palo Member Posts: 239
    edited 30. Nov -1, 00:00
    Sorry forgot to add,

    I was waking in pain every night until I got an electric blanket and am sleeping much better now, rarely waking in pain.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Sue the wee small hours are indeed lonely and fearful, and made worse if our nearest and dearest are snoring away beside us. I've found that actually getting up and making a warm drink (Horlicks for me) and reading a couple of chapters of a book just helps me less anxious and better able to nod off again. Also if it's arthritic pain that wakes you maybe you could ask your GP about better pain relief.....I was down to only 2 or 3 hours sleep each night until eventually I succumbed to the GP's suggestion of pain patches which release a steady flow of pain relief for 7 days. I know it's a big step forward to accepting we need that kind of relief but sleep is essential for our general health. On the plus side I now sleep much better, normally only wake once a night and in myself feel much more human..... it doesn't take away some of the other struggles and frustrations of a life with RA, but it has dealt effectively with that particular issue.

    Deb
  • stremlett
    stremlett Member Posts: 37
    edited 30. Nov -1, 00:00
    It is never pleasant to wake in the night and things as you say seem much worse then. I have got my camping kettle, tea bags and cup into my bedroom to make a hot drink in the night to save getting up into a cold kitchen. I have also invested in an electric throw which is tremendously comforting during the night. As I have to take medication during the night I put them out ready nearby so that I don't make mistakes while I'm sleepy, I also add an additional tablet that I can take if I really need it; that means that I never go to the medicine cabinet in the night.
    As you know, it's not helpful to make serious life decisions in the middle of the night and when you're uncomfortable, leave it till the morning.

    I have an iPod with some long stories and just listen to that and it doesn't matter if I fall asleep. My biggest difficulty during the night is that sometimes I awake and can't move and tend to panic a little. I now know that if I totally relax and try to slowly stretch my legs out completely I won't panic and I will be able to move after a minute or two -- you can find out something that works for you maybe

    I agree with you we have to accept that things may never be the same but we can't be sure about that you know; things may improve dramatically as you find ways to manage your illness and the doctor gives more help. I found the old book "You Can be Happy No Matter What" to be be extremely useful. "How to be Your Own Best Friend" by Paul Hauck is another little gem for dealing with unhelpful thoughts. I wouldn't read these books during the night rather apply the ideas once taken on board. These books are really cheap on Amazon, secondhand.

    Remember when you wake one of us on this forum will be awake too! You can send them a mental smile :-) Hope you feel better soon. sue T
  • Sue
    Sue Member Posts: 40
    edited 30. Nov -1, 00:00
    Thank you all for your empathy and advice. Much appreciated.

    The observation that I am grieving for what I have lost, really hit home. I hadn't thought of it in that way but it's right! I am. Also the statement that we dont appreciate good health when we have it,is true. I never thought this would happen to me but I suppose we have all said that. But...well, here we are.
    I am still working full time but had to give in today and leave early. I just hurt so much that I couldn't concentrate on anything. I was shaking with the pain. I have had our Occupational Therapist come to visit me and she has recommended a special chair and other aids which should make me more comfortable. However these need to be approved by my boss and a I can't get him to agree to them. Do I have any rights with this? Can I force my company to provide me with things which would help me stay at work?

    Once again, my heartfelt thanks for your comments and help. It's really good to hear from people who understand. This forum is a god send, I think my husband has heard my woes more than enough recently.

    Wishing you all a good nights sleep,if you can.
    X
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I don't mean to sound unkind but it could be that he probably has. He is in the unenviable position of being unable to do anything to make things better, something which, after twenty years watching my gradual decline, my husband still finds annoying and frustrating (I'm not too enamoured either :wink: )

    Have I told you about The Spoon Theory and There's a Gorilla in my House? Both give succinct explanations of living with a chronic condition and can be helpful for friends and family to read. I cannot help on the work front because I was self-employed (I had a wonderfully understanding boss). I stopped after fifteen or so years, by then so much of me was affected by the PsA, OA and fibro that concentration was very nearly zero (and is still a struggle). DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • TheLordFlasheart
    TheLordFlasheart Member Posts: 302
    edited 30. Nov -1, 00:00
    Not much I can add to what has already been said before. But I too suffer on occasions from sleepless nights, to the point it was affecting me at work - feeling worn out by the time I finished.

    Im now on pain patches, and they have helped immensely in getting a good nights sleep. Before I had them, I would at times get less than 5 hours sleep.

    As the rest have already said, we all empathise with your situation and are all here to support you.


    Alastair
    "Stoke me a kipper, I'll be back for breakfast"
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, how are you getting on? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Sue
    Sue Member Posts: 40
    edited 30. Nov -1, 00:00
    Hi

    I actually felt a bit better for a few hours yesterday. But here I am at 3 am and frightened and hurting. Am I doomed to never have a full nights sleep ever again?
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    This is all very new for you, these are very early days. I often wonder what good health feels like (I've never had it so don't know what I'm missing). Looking at it from the outside it seems to be freely-given to the majority and, in my experience, very few of them show any gratitude for it; moaning when they have a cold, complaining if they're on crutches for a while after breaking a leg skiing, telling me that they 'don't do ill'. Guess what, buster? Neither do I but it's not a choice.

    I came across a proverb (I can't recall from which country) which said 'Health is the crown on a well man's head but only the sick can see it.' I think that is very true. I also swear by this from Khalil Gibran: the deeper sorrow carves into your being the more joy you can contain. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Sue
    Sue Member Posts: 40
    edited 30. Nov -1, 00:00
    Thanks DD
    That proverb is very true.

    I am at work now so can't say much. I'm grateful that I can work it takes my mind of things for a while.

    I Really do appreciate your wise words. Have the best day that you can. X
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Am I doomed to never have a full nights sleep ever again?
    Shades of Dad's Army!
    Seriously though, no you are not doomed to never having a full night's sleep again, as circumstances might come together sufficiently(pain treatment, disease status etc) to enable going to sleep at x o'clock and waking at y o'clock, where x and y are a reasonable number of hours apart.
    However what might happen is that you set your sights a little lower to 'adequate night's sleep', which may mean say 3 hours, wake, then another 4 hours, or 6 hours unbroken and a period of dozing/resting. Less than ideal, but enough to get you through most of the time.
    Sleep and I have mostly had a less than satisfactory relationship for a number of reasons and ways of coping have varied over the years accordingly. For the past year or so I have found that getting up and settling in the living room with low light levels listening to music very quietly(R3 Through the Night usually for me) and looking at a book(not reading a novel) has been helpful, possibly because it breaks the cycle of tossing and turning in bed and reinforces that the bed is for sleeping. It also gives me the chance to sort out whether pain relief is needed and if so what sort, replenish a hottie if necessary, go to the loo.... I'm lucky that my current home doesn't get too cold at night, as getting cold definitely doesn't help.
    I do hope that you can eventually find some coping strategies to get you through the bad times, but it can be hard when it's as much the mind and our thoughts as the actual physical that is causing the problems.
  • Sue
    Sue Member Posts: 40
    edited 30. Nov -1, 00:00
    Thank you Daffy. You obviously understand and have given me some good things to think about. Very wise and helpful information. I just need to adjust to this new life and how to cope and adjust to it. It's not easy as you know. I have had tremendous support on this forum for which I am grateful.
    I will probably be " talking" to others during the night!
    It's just that the nights are so terrible! I am so frightened of what the future holds for me.
    This forum is a God send. Such lovely people all wanting to help each other. I am glad that I found it.
    X
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Glad to be of help Sue. It's a hard process coming to terms with what's going on, not helped by your very understandable fears for the future crawling out of the dark in the wee small hours.
    The Helpline people are very good at listening if you can find an opportunity when they are open, and sometimes just saying out loud, to someone you don't know and cannot see, what is troubling you can reduce that trouble to a more manageable level.
    Hang on in there, learn to recognise the small things which have gone right or have given pleasure and treasure them against the rough times.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I dread having a good night's sleep and luckily I rarely do. I take pain relief about an hour before settling so that is getting to work as the lights go out. I set myself a five hour limit before the next dose and normally wake up at least twice before then with break-through pain. I occupy myself with creating ridiculous alphabet lists or, if things are really bad, turn to my Kindle.

    Distraction is the most effective pain relief method for me, the meds do their bit but pain is a fact of my life and that isn't going to change. I've had years and years of it and it doesn't bother me now because I know what's what, you just a few weeks / months so it is still very early days. Pain is an outrage, an affront, an insult; yes, it is the body's way of letting us know that something is amiss but in our cases it refuses to do the decent thing and shuffle off for a while and that ain't easy to live with. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben