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……(Musings and Plans 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 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.
Sure, he could sleep in the guest room but that’s just not us. Many couples do that and it makes perfect sense. Some couples literally don’t have a choice as different types of diseases make sharing a bed impossible. That’s really tough.
In our situation, for as long as we can, my husband and I are committed to staying side by side to fight this chronic illness battle. For now that includes still sleeping in the same bed.
The only time we’ve slept apart is if one of us has been in hospital or when I was working and was away at a conference.
That’s across nearly 23 years of marriage.
Navigating the Night Time Pain
On bad nights I usually wake at 2am. So, I make my way downstairs. Sounds easy but I have to navigate down the long hall to the staircase using my crutches. I then use the remote to get the stairlift to come up the stairs from its parking bay downstairs. I carefully climb on it and then once at the bottom, struggle to the kitchen to make a much needed cuppa.
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 take an extra pain killer.
The thought of this process often makes me just lie in bed in pain 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 that 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 Nights 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 that, not fighting it, helps me relax and find a place of peace. That helps sleep to eventually return.
Some of my other tips for those disturbed nights (remembering that 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 pick up my phone and 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. In my experience I usually sleep like a baby the following night due to exhaustion. It also always seems to be a restorative sleep.
So Is 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.
With some solid strategies, a settled mind and peaceful heart (helped along with meds and a hot drink) sleep will eventuate. Pain will begin to subside enough to allow that place of slumber to return.
On those occasions when it doesn’t…..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