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)?

20180510_205147_0001

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

 

 

 

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

  1. I think I needed to read this today after feeling so frustrated with my body not wanting to do what I wanted it to (which was my already ‘paced’ routine). You’re right that sometimes we need to pace the pacing, and accept that. The result of pushing yourself isn’t worth it sometimes, not unless absolutely necessary. It’s also fascinating to read what you ‘usual’ days include (I’m so nosy)!
    Brilliant post, Sam! 🙂
    Caz xx

    Liked by 1 person

  2. Thank you so much for sharing your pacing schedule Sam !
    Even after years at home, I’m still waiting to ‘get all the things done’ in the manic fashion I used to when I got mad enough at the state of things……but, I got mad and then weary then would crumple, spending months despondent at the mess.

    Your schedule may be just the time-energy balance that can help me make the most of this ‘new’ way of life !
    ♥ Thank You ♥

    Liked by 1 person

    1. I’m so glad you found this helpful Lisa. I really hope you can find a pacing routine that is just perfect for you. It’s not easy to evolve from wonder woman to an extra slow snail. It’s taken me a long time to work it all out and I still have hiccups along the way. Just remember you are still wonderful, even as a snail. Lots of love 💞💞

      Like

      1. Aww, I Love that Sam !
        From crazy buzzybee ….. now comes Lisa the Wonder Snail ! Lookout housework, I’m coming at you ! ♥^-^♥ I’m so glad I ‘know’ you, here in Internet land. From my very dark days your kind words and sharing has helped Me . Now I’m a bit better trying to find a way to function, You’ve helped again .
        I’m keeping this to reflect on when i find myself “waiting for the energy” instead of doing 5 or ten minutes of something here and there.
        Thank you Sam
        You are very much appreciated

        Liked by 1 person

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