A Paced “Chronic Illness Life”, Sometimes Requires Extra Pacing

I’m a huge fan of pacing. It’s number one on my list of key chronic illness/ pain management strategies.

Pacing doesn’t remove symptoms or take all my pain away. It does help to reduce some discomfort and reduces the risk of me causing an escalation of more crippling issues.

Well, usually it does that!!

My Normal Daily Pacing Routine

Being permanently disabled and medically retired, I have a very set and very strict daily pacing routine. If I try to change it, even slightly, there is always consequences.

So without boring you with every detail the high level overview of my plan looks like this:

  1. Wake up and take pills;
  2. Have breakfast in bed (thanks hubby) and check my forum, emails etc;
  3. Go downstairs and do some chores (eg: light dusting, load dishwasher) 1 hour max;
  4. Make hubby and I morning coffee…..sit and chat for 30 mins;
  5. Clean up coffee cups etc;
  6. Go back upstairs and lie down for an hour;
  7. Get up, make bed and get dressed for the day (this is around 12pm);
  8. Go downstairs and unload dishwasher;
  9. Make cup of tea and sit in my lounge chair;
  10. Hubby makes us lunch and we’ll watch a favourite recorded TV show for an hour;
  11. Clean up after lunch;
  12. Go upstairs to my office and pay bills, check emails and forum etc (30 mins max as the pain is too much in this position);
  13. Go back downstairs for a cuppa with hubby. We’ll often sit in the courtyard;
  14. Go upstairs to lie down for an hour. I use this time to write;
  15. Come downstairs and sit in my armchair while hubby cooks dinner. I continue to write or work on my forum, scheduling segments or chatting with members or my admin team online;
  16. After dinner I shower and am in bed by 8pm. Hubby comes upstairs and we spend the evening watching TV or a DVD, chatting together and I’ve aways got one eye on my forum.
  17. Lights out around 11pm.

It really couldn’t be more paced. I’ve had to completely overhaul my need to achieve a week’s worth of activities in a day. That was my old life. This is my new life.

If I have a medical appointment or we want to attempt a pleasurable outing, I have to rejig the whole day to have any hope of making it happen……that’s a whole other story!

Any Slower I’d Stop Completely

There we have it. Truer words have never been spoken.

There are some days when even my paced approach to living isn’t enough.

There are some days when I simply can’t push through the small active periods of my day.

I have to admit I really do hate those days. It’s like my body digs its heels in and says, ” Where do you think you’re going? I don’t think that’s going to happen today. I hope you have another plan!”

How can I possibly come up with another plan, when I pretty much live at a snail’s pace in four walls in an “upmarket hospital ward”…(aka my home)?

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Pacing The Pacing

There is only one possible plan…pace even more.

Is that possible?

Well, yes apparently it is. I seem to be able to do it when I literally don’t have a choice.

It’s not fun but it’s essential. So, in stark contrast to my normal “active and adventurous” life, ( yes, sorry that was a hint of sarcasm), here is my “pacing the pacing” routine:

  1. Wake up and take pills.
  2. Have breakfast in bed (thanks hubby) and check my forum, emails etc;
  3. Attempt to go downstairs. It’s at this point reality kicks in;
  4. Get downstairs and collapse in my lounge chair;
  5. Try to get up to make morning coffee…fail miserably;
  6. Realise it’s just not going to happen today;
  7. Feel disappointed but very quickly decide it’s a full on writing and resting day. Could be worse;
  8. I’ll throw comfy day clothes on ( throw is obviously a massive exaggeration!);
  9. I’ll rotate between resting downstairs and upstairs but I’ll need to spend most of the day on the bed;
  10. I’ll shower around 4pm, get into bed properly and spend the rest of my day/night there (including all meals).

Take a Sick Day

Despite being a little “tongue in cheek” my important message is that there are days, when living with chronic illness, you have to accept you need a full on “sick day”.

If you were healthy and working you would take the occasional sick leave day. You’d have no choice.

This is no different. There will be days when we can’t function at our “normal” chronic illness pace. Days when we need to take a “sick day” from our chores or other commitments.

I’ve even had days when I’ve had to call in sick to my Doctor. Sounds bizarre doesn’t it but it’s true. That conversation goes something like;

“I’m too sick to see Dr xx today, sorry I’ll have to try another day!!

Don’t feel like a failure if you have to pace your pacing. It’s just a blimp, a glitch. You may get away with only taking one sick day or it might be a case of needing a week of them.

The important point is, the sooner you start “pacing the pacing”, when your body gives you the knowing signal that all is not well, the sooner you will get back to your normal level of paced activities.

I’m trying to convince myself of this, as much as I am anyone else. I know it’s not easy but it’s essential if we want to navigate this chronic illness life in the best state possible.

Take care

Sam xx

Bible Verse

Come to me, all you who are weary and burdened, and I will give you rest.”

Matthew 11 v 28 (NIV)

 

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.

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

I also write @ Blogs by Christian Women

 

 

 

Sleep and Chronic Pain – Is That Even Possible?

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.

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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 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.

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 and the  Grace Girls Facebook Group

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