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.
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.
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
If you would like to read a little more about my journey, here’s the link to My Story