Sleepless Night Strategies

I can cope with most things about my disability. I’m not saying it’s easy. It’s far from easy but I have a toolkit of chronic disease management strategies, I’ve written about in the past, that help me on a daily basis……(My Chronic Disease Management Plan and Body Behaving Badly)

My pain is unrelenting during the day but I can find things to keep my mind occupied, to distract me as much as possible.

Those Early Hours Of The Morning Are Just Plain Hard

When pain overtakes my body in the early hours of the morning it’s just plain hard. I simply can’t sugarcoat night time pain with positive throw away lines.

Tossing and turning makes my legs and spine hurt even more than usual and I’m acutely aware I’m disturbing my husband. That’s the last thing I want to do. He needs his sleep. He does so much for me during the day that I feel it’s unfair to disturb him at night.

Since moving we don’t have a guest room for one of us to escape to. Even when we did we didn’t use it. In our 24 years of marriage we have never slept apart, unless one of us has been in hospital or when I was away at a conference when I was working.

I’m so aware that many couples, living with chronic illness, do need to sleep apart every night. They literally don’t have a choice, as different types of diseases make sharing a bed impossible. That’s really tough. We know it’s a very real possibility for us too as my disease progresses.

In our current situation, for as long as we can, my husband and I are committed to staying side by side to fight this chronic illness battle together.  For now that includes still sleeping in the same bed. I still don’t want to disturb him unnecessarily though, so I need Sleepless Night Strategies”.

Navigating the Night Time Pain

On bad nights I usually wake at 2am.  I try and assess if I’ll get back to sleep or if I’m fighting a losing battle.

Often it’s the latter so I make my way to the kitchen.

Sounds easy but I have to try and get out of bed first. My unstable spine makes this an almost impossible task. I don’t want to wake my husband, but it’s so hard not to scream at the intensity of the pain.

I grab my crutches from the side of the bed and count to 10 before I attempt to stand. Once upright, (takes numerous attempts), every step causes bone on bone in my spine to rub and grate, all while compressing my spinal cord and nerves. The instability I feel in my lumbar/ pelvis, makes me feel physically sick.

I need to get to my lounge chair but I need to make a cuppa first, as quickly as possible as the pain of standing on an unstable spine, when pain meds have run out, is excruciating!

I carefully carry the cup of tea in one hand, using only one crutch in my other hand, to move to my lounge chair. I really need two crutches so it’s a delicate operation.

Finally, I sit, I breathe. The first sip of tea, is just heaven.

The thought of this painful process often makes me just lie in bed on bad nights, rather than going to all this effort, but other nights the pain wins. I have to break the cycle and get up and move.

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It’s Not My Fault, It’s Not Your Fault

As I feel the extra pain killer starting to work and the warm drink bringing a feeling of comfort, I begin to relax.

I know I am going to be a cot case tomorrow. Actually a bad night like this has consequences that carry over a number of days. A harsh reality of living with a chronic disease.

I always want to find a reason for having a rough night. My mind searches for answers.

I must have done too much.

I haven’t rested enough.

A whole list runs through my head finding reasons to blame myself for my soaring pain levels.

In the stillness of my lounge room with the clock ticking for company and otherwise silence surrounding me, I eventually settle my thoughts.

I remind myself I haven’t done anything to cause this disease to attack my body. I have spent my days balancing rest and activity.

I am managing this the best way I can. This is not my fault!

Sleepless nights and unrelenting pain are not the fault of the chronic illness sufferer. We have to try and live each day the best we can. We have to move our bodies. We even have to stretch our limits from time to time to achieve an important goal.

It’s not our fault. It’s our disease causing the pain and the sleepless nights.

What we need are strategies to deal with yet another part of living with chronic disease

Sleepless Night Strategies

There are some really great “Good Sleep” resources online. This one is from the Macquarie Universities Chronic Conditions Course and it’s my favourite: Good Sleep Guide.

Sleepless nights will happen from time to time. Accepting this, not fighting it, helps me relax and find a place of peace. Being as calm as possible helps sleep to eventually return.

Some of my tips for those disturbed nights (remembering they are not your fault) include:

  • Get up when pain is overwhelming. Breaking the tossing and turning cycle really helps;
  • Make a hot drink and if you can, take some break through pain medication (speak to your Dr about this);
  • Don’t put a time limit on when you should return to bed. Listen to your body. When you start to feel relaxed and your eyes want to close, it’s time to try again.
  • If you go back to bed and you still can’t sleep, just enjoy resting there if your pain is manageable. If your pain is too distracting, get up again and relax in your favourite chair. You might nod off there and that’s fine so long as you are in a position that supports your body correctly.
  • When my pain is really bad at night I have to distract myself, so I’ll write a blog post, or I’ll reach out to someone on my Facebook forum.
  • Online support groups are excellent in the middle of the night if you need to debrief with someone who really understands. My forum Medical Musings with Friends , is an international group so there is always someone around to chat with.
  • The next day try and maintain your normal routine.
  • Make sure you stick to your daily rest schedule but don’t try and catchup on sleep. Our bodies function much better with regular routines.

So Is Good Sleep and Chronic Pain/Illness Possible?

Yes, I think so but there will be nights, even seasons of nights, when sleep will be disturbed. Try not to stress when the sleepless night arrives.

Remember implementing some of the basic “good sleep” strategies will help:

 Having a regular time when we go to bed.
 Having a regular time when we wake up.
 Having a regular ‘wind down’ ritual before sleep.
 Making sure we do enough during the day to be tired at night.
 Avoiding napping during the day and trying to ‘catch up’ on sleep.  (Rest periods during the day are important though).

With some solid strategies, a settled mind and peaceful heart, sleep will eventually return. Pain will begin to subside enough to allow you to relax a little, especially once pain meds kick in.

On those occasions when sleep doesn’t seem possible …..we might just find ourselves chatting online.

Sleep well.

Sam xx

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network,  the  Grace Girls Facebook Group and Salt and Light Linkup Group

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14 thoughts on “Sleepless Night Strategies

  1. Morning sam its 04.08 in the UK. I slept ok, i went at 7.30 i couldnt stay awake any longer, woke at 10.00 had my tablets, went straight back to sleep and woke at 4am. I have my small kettle by the side of my bed so i make my coffee i have to have a coffee no good i am like a bear without it. I have a commode by the side of my bed, so i have a pee. I always need pees in the night i suffer nocturia.

    My doctor does not want me to use the bathroom at night as i have suffered bad falls. I stopped sleeping with my hubby years back to be honest because of his COPD and he snored heavily. It was his decision. I could not sleep, so we slept in separate rooms but had a walkie talkie so if we need one another we could contact.

    He was working only a few months before he died at 71.

    I agree with you about routine. I never sleep in the day. I get up at 7am. bed at 6pm, sleep by 7.30 to 8pm.

    I am so tired by 3pm i could go to bed easily but i have my dog and she needs to go out for a game of BALLIE, and her pees etc. so her needs are important, and i have to feed her and the cats too.

    I wake up usually in spasms. i have them now, but i wont take pain killers once i get up i am a total light weight with one paracetamol lol.

    Nerve pain is worse when you wake up as you need to distract yourself.

    i often wonder what it must be like to go to bed sleep and wake up in the morning. I cant ever remember doing that to be fair.

    I am 68 now so technically supposed to have less sleep. I do ok though i usually get 7 hours most nights and sometimes 8.

    If i woke up and started fiddlying on facebook etc i would never sleep lol. so if i do wake up really early like for a pee i cuddle back with my poochie and drift off. I usually fall asleep thinking about my Mike.

    when you get up can you have a flask of coffee ready for yourself. a good thermostat last ages so you can just sit down and enjoy your hot drink?

    I cant imagine how you cope with spine pain I mean i get back pain with MS but its usually down to not walking right.

    I hope you manage to sleep tonight. big huge hugs from me in the UK. xxxxxxx love your blog its so true. xxxxxx

    Liked by 2 people

  2. I could do that Kathy but I can’t sit up in bed because of my spinal issues. Getting out of bed and out of the room helps me get back to bed sooner. I’d also disturb my hubby if I stayed in the room and I really want him to get as much sleep as possible.
    I do have water and all my meds by my bed though xx

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  3. Morning/evening Sam what i mean is have a thermos ready say in the kitchen. so you dont have to worry about boiling kettles. I understand about sitting up in bed hubby couldnt do that after his spinal surgery he had to get up.

    Hope you had a better day although from facebook it didnt look like it. I cant imagine what you must go through. I think your inspiring and a truly wonderful person, so caring of others needs. I wish there were more like you. xxxxxxx

    Liked by 1 person

  4. I worried about you trying to carry that hot tea and walking with one crutch. Could you maybe make a thermos flask of tea before you go to bed and leave it by your chair?

    Getting a good sleep really is important and can help us to cope with pain better. Like you say, rather than toss and turn all night, it’s better getting up and having that cuppa, reading, watch a movie or chat online, then hopefully the tiredness will come.

    Liked by 1 person

    1. Thank you 💜 I’ve had to learn to do lots of things using crutches or my walker to maintain a certain level of independence. My kitchen is right next to the lounge room (all open plan) so that makes life a little easier. In our new home our bedroom is directly off this open plan area too, so really c conducive to living with a mobility disability.

      The hardest part of the whole process is physically getting out of bed as my spine just locks and screams at me.

      Most nights I’ll just have some water and an extra pain med, which is all by my bed, and slowly drift back to sleep xx

      Liked by 1 person

  5. great tips for breaking the cycle. Sleep is my enemy. Either I can’t get to sleep or I can’t stay asleep, it seems like it’s always one or the other.

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    1. I hear you, especially on “can’t stay asleep”. I seem to quickly fall asleep and then wake up every 2 hours throughout the night. Very frustrating. I’d love a solid, restorative nights sleep xx

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  6. Sleep has been my nemesis for a long time! 😂 Over time, with different problems, the nature of my sleep and the problems that arise have changed, too. I think you make a really good suggestion with either enjoying simply resting (rather than stressing about not sleeping and how tired you’ll be in the morning) or distracting yourself (which I find quite helpful, especially if I do something either enjoyable that makes me smile, or productive to feel better about the time ‘wasted’). xx

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