Tag Archives: Resting

On Routine and Pacing

22 Oct 15
Megan
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I’ve mentioned many times about trying to maintain some form of routine and pacing as a way of managing my health. Now it’s something I need to refocus on.

I’ve got goals and dreams that I want to achieve within the next few years, and in order to do them I need to be as healthy as I can be. As I’ve previously mentioned, over the last few months I’ve begun adding work back into my life and this has thrown the routine I had set for myself out the window.

Why is it so important for you to have some form of routine?

In order to maintain a lower level of pain and more energy I’ve found the only thing that even works a little is pacing myself. Without routine it’s hard for me to keep my step count consistent and to actually motivate myself on my crash days.

I want to increase my step count back up to where I was before I crashed around Christmas last year (an average step count of 7,000). To do this I’m slowly raising what my minimum step count is for crash days. Over the last 3-4 months I’ve raised my minimum step count from less than 2,000 to 3,500. I’m raising in 500 step intervals every few weeks.

But what about the things that happen in life? You can’t plan everything!

No, you can’t but you can set yourself up so that you have some reserve for the unexpected while still maintaining a general routine on a day to day/week on week basis.

What’s your plan?

At this stage I’m still formulating a new plan for pacing and setting a routine that is flexible enough but I think it will look something like this…

8 – 8:30 am

Do some deep breathing, get up and do a short yoga sun salutation

8:30 – 9:30 am

Shower or bath (pain relief technique) and get dressed, rest if necessary

9:30 – 10 am

Breakfast

10 am – 12 pm

High energy work/housework/appointments with regular rest breaks

(no longer than 1 hour activity at a time without a break)

12 – 1 pm

Lunch

1 – 3 pm

Lower energy work/housework/appointments with regular rest breaks

(no longer than 1 hour activity at a time without a break)

3 – 5 pm

REST (tv or nap depending on energy levels)

5 – 7 pm

Make and eat dinner

7 – 9 pm

TV

9 – 9:30 pm

Pelvic Stretches, prepare for bed

10 pm

Bed

It’ll take me a while to build up to this (especially the getting up and going to bed at a regular time) but it’s important to me to push myself without going past my limitations.

Have you ever tried to set yourself a routine? How successful was it?


Physical Friday: 3 key steps to surviving a busy week with Myalgic Encephalomyelitis and Fibromyalgia

07 Mar 14
Megan
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So… it’s Friday morning here, and the Kickstarter campaign for Foggy Frog and the Pain Gang is now in it’s 6th day and 25% funded. If you haven’t checked it out already, please head over and watch the video to understand what we are trying to achieve. This week has been the busiest week I’ve had in over 8 months but I’m surviving.

Today is the first day in a week that I don’t actually have anything ‘planned’ with a set time I have to do it. I do want to catch up on the washing and do a few other littler chores around the house, but I don’t need to go to an appointment or meet up with anyone outside. Surprisingly, although I’m fighting with Foggy Frog to stay focussed on what I’m doing and fighting with my eyelids to stay open, I’m not actually feeling as bad as I thought I would today.

It’s Physical Friday today, so I thought I’d share with you the steps I took this week that I think may have helped me survive such a busy week without a full on crash (touch wood).

(c) Megan S, December 2013

(c) Megan S, December 2013

3 Steps I took to survive my busy week

1. Plan in Advance

I knew in advance that this week was going to be extremely hectic and possibly even stressful so when booking the appointments I tried to space them out over the week and made sure I had time to rest both before and after every appointment.

To keep the impact of the Foggy Frog campaign down as low as possible I’d planned in advance how I was going to launch it. I asked friends to prepare the food, I pre-wrote all the questions for the online launch, and I prepared and scheduled emails to go out on launch day. Without having done this the launch would have been a lot more stressful for me and would have probably caused a crash on its own without adding the rest of the week’s activities.

I also had my first late night class (a 3 hour class starting at 6pm) for the illustrating children’s picture books course. Although I had no way of knowing how I was going to cope with this class, I had made plans for E to be ready to pick me up at any stage if it got too much and I made sure the tutor knew that if I left early it wasn’t that I didn’t want to be there, it was that I couldn’t last any longer. (Luckily it actually finished slightly early and I made it to the end).

2. Be Gentle on Yourself

There were multiple times during the week when I started to feel that it was all getting a bit too much and I wasn’t going to cope. At these points in time I made myself stop whatever I was doing, sit or lie down, close my eyes and just breath for a while. This technique seemed to work well as ‘mini breaks’ throughout the days when there was no way I was going to get my normal rest.

I also prepared mentally and let myself know that it was OK if I couldn’t get everything done. I gave myself permission to leave things early, or cancel appointments, and even though I didn’t need to do this in the end having the permission removed the additional stressors from my days.

3. Take Regular Breaks

This was a big one, and I discussed in more detail on Wednesday how I was planning to do this. Finding time for myself and just relaxing was probably key to reducing the impact of this week on my health and wellbeing. I’ve had 3 baths this week, done several short meditations, and taken very short breaks just to breath as I outlined above. The baths all used Epsom salts which increase my magnesium levels and reduce cramping, so they were extremely beneficial on the nights I was feeling over it all. The other activities just gave me mental space to step back and assess where I was at thus avoiding too much stress and discomfort.

These three steps have been vital to me this week and I will keep on using them during the rest of the Kickstarter campaign. We have just over 21 days to go and $5,600 still to raise. I know that we will make it because I know how important this book is for our community.

Everyone I have spoken to who suffer from any of the invisible illnesses (Fibromyalgia, ME/cfs, MS, Lupus, etc) all have the same story to tell… Lack of awareness and understanding (and even misunderstanding) in the general community about what it’s like to live with these invisible illnesses. Foggy Frog is the first step in providing awareness and understanding to the wider community on what this is like.

Do you have any other steps you would add for surviving a busy week?

Have you found you can maintain a higher level of activity for an extended period of time without crashing?

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Please get behind Foggy Frog and the Pain Gang. Add your voice to ours in letting it be known that we want to be heard. A donation of just $1 will add your name to our list and the more people we get working together, the more likely it is that the general population will stand up and take notice. Visit http://bit.ly/FoggyFrog and pledge your support today.

“When the bloom of the Jacaranda Tree is here…

02 Dec 13
Megan
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Christmas Time is Near!”

From Christmas Where the Gum Trees Grow, An Australian Christmas Carol

Photo (c) Megan S, December 2013

Photo (c) Megan S, December 2013

Christmas is usually a time of excitement for me. By now I’ve usually set up our Christmas tree and sorted out what I want to get everyone for Christmas (even if I haven’t bought them all), and I’m usually looking forward to all the celebrations; but this year is different.

I haven’t set up our Christmas tree yet, I have struggled to get the energy to even think about most of my Christmas presents, and I’m not really excited and looking forward to the upcoming celebrations (at least not in the same way as I usually am). Instead I’m still focussed on just trying to pace myself and get a better grip of this illness. Having said that, I am still looking forward to some parts of Christmas.

To me the most important parts of Christmas are the catching up with family and friends and celebrating together. This has already started for us this year. My sister is leaving for overseas this weekend, so I did an early Christmas brunch with her, my brother, mum and step dad. E and I also caught up with a group of our friends yesterday afternoon which was labelled a “Christmas Catch Up”. Both of these events were great as they were fairly small groups and just involved catching up and having fun, no expectations of presents, extra input from me, or staying for any particular length of time. They also illustrated to me that no matter how low key the event is, I’m going to be using a lot of my precious energy up at these events.

After each of the two events I have felt extremely drained and have literally crashed on the couch in a ball of pain and exhaustion. I’ve relied on E or my mum to make sure I still did all the things I needed to the rest of that day and the following day.

The next big Christmas event I’m aware of, is E’s family Christmas gathering on Christmas Eve (I’m sure others will come up in between and I have asked about when my work one is). This event, although not big in terms of the number of people there, does have certain expectations; presents and a sit down dinner. E and I have already had a chat with his mum about cutting back a bit on the presents next year because we’ve both found this year to be very stressful and she has agreed we can make them not an expectation next year. Dinner should be OK because everyone there knows what I’m going through and I’ve already been told I can go and rest when I need to, but it will still be a very long afternoon/evening and I’m going to need to rest up a lot before and after.

I believe E and I have agreed that this will be the only major commitment we make this year. Unfortunately this means that, unless by some miracle I have lots of energy, we will not be participating in my family Christmas lunch on Christmas Day. In some ways I’m grateful for this, as it is a very large gathering with lots of people. In other ways I’m a little disappointed, Christmas and Easter are the two times of the year that we see a lot of these people. Overall, I’m not going to feel too guilty about missing my family Christmas this year because we saw most of them at my sister’s farewell the other week.

All other Christmas catch ups will be paced out both before and after the actual day so that I have time to rest in between each event.

How do you deal with the expectations of family and friends during the holiday season?

Do you have any tips on getting through my first Christmas with chronic illness?

How I spend most of my time these days

24 Nov 13
Megan
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2013-08-15 15.02.09       OLYMPUS DIGITAL CAMERA        OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA      wpid-IMG_20131118_173636.jpg     OLYMPUS DIGITAL CAMERA     OLYMPUS DIGITAL CAMERA

All photos above (c) E.S., 2013

Chronic Pain and Fatigue – Resting

17 Nov 13
Megan
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Resting… What is it really?

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Photo (c) Megan S, November 2013

To some people resting may be watching TV, or listening to music, or reading a book. But these activities still use energy, mental energy just not physical energy.

For someone with chronic fatigue and pain this is still too much energy expenditure.

To aid recovery we need complete rest. This means doing activities that increase energy or doesn’t use any at all.

What activities can be counted as rest then?

For me rest is:
~ lying down with my eyes closed and completely resting (dark and quiet, or listening to meditation music)
~ yogic breathing exercises (try my previous post on reducing stress and the Yoga Studio App for examples)
~ mindful meditations focusing on breathing or rotating through the body parts
~ Sitting/lying out in nature

These activities maintain or increase my energy levels after I’ve completed them and help to reduce any increase in pain and other symptoms exacerbated by doing too much.

What techniques do you use for resting?

Why do we do this to ourselves?

02 Nov 13
Megan
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So, I woke early this morning with every part of my body aching and throbbing with pain. No matter how much I tried to get back to sleep, I couldn’t. In the end I got up and had a hot bath which soothed my muscles enough to get a little bit more sleep.

I’m pretty sure that this is a result of me doing too much over the past week and next week is just as busy (if not more so).

So why do we always try and fit too much into our lives?

I know that if I’m going to get better and build up my ability to do activities in a healthy way with chronic fatigue and chronic pain is to pace myself and cut back on how much I do in one day. And, compared to before I got sick, I am doing much MUCH less.

Before all this I was working full time, studying part time, exercising 3x a week (minimum) and spending a reasonable amount of time with my family and friends. Now I spend most days at home, only going out for medical appointments and occasionally visiting family or doing something with our friends. I do only 5 to 10 minutes of yoga a day and one short walk (I’m up to 6 minutes at the moment). I need to rest at least 2.5 hours a day and even then I feel as if I haven’t slept 99% of the time!

I know that with time I’ll get better at pacing and at saying “No” to those invitations I really shouldn’t be accepting but I guess at this stage I still want to believe that I can do everything I want to and that the consequences will be worth it (even though deep down I know that’s not true.

Do you still struggle with pacing yourself and saying no to those activities you really want to do but know you shouldn’t?

What techniques or tools do you have to help you with this?