I can cope with most things about my disability. I’m not saying it’s easy, it’s far from easy.
I have though, over the years, developed a toolkit of chronic disease management strategies which I’ve written about previously. These help me greatly on a daily basis:
My pain is unrelenting during the day but I can usually find things to keep my mind occupied, to distract me as much as possible.
Night time is often a whole different story.
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.
I’m acutely aware I’m disturbing my husband which is the last thing I want to do. He needs his sleep. He does so much for me during the day 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 25 years of marriage we have never slept apart, unless one of us has been in hospital or when I was away at a business conference during my working years.
I’m so aware 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. This must be 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 this includes still sleeping in the same bed. I don’t want to disturb him unnecessarily though, so I needed to work out some “Sleepless Night Strategies”.
Navigating the Night Time Pain
On bad nights I usually wake at 2 or 3am. 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, and lack of pain killers in my system at this time of the morning, 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, breathe deeply 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!
Thankfully our new home is of cottage proportions, so the walk from the bedroom to the kitchen is very short. It’s equally short from the kitchen to the lounge. I’m so grateful for this.
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 to walk at this time of the morning, so the one crutch waddle is 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 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 killers 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 which 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 and reduces pain.
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 but make sure 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 often 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 forumMedical 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 I A Good Sleep Pattern With Chronic 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.
Implementing some basic “good sleep” strategies will help:
- Having a regular bed time;
- Having a regular wakeup time;
- Having a regular ‘wind down’ ritual before sleep;
- Making sure we have enough activity 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 …..please don’t stress. Who knows, we might find ourselves chatting online.
If you’re looking for genuine support, care, understanding and 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 and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
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
Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!