A lot’s been happening around here lately! Preparations are underway for the Foggy Frog and the Pain Gang Book Launch and the AAEE 2016 Conference.

I’ve also added a bit more variety to my exercise routine by joining the new local gym (Council owned and operated).

The main reason I’ve joined is so that I could add swimming into my exercise routine but I’m also going to try out some of the classes they run.

Obviously, I’m going to focus on pacing and aim to not overdo it by adding too much too quickly but I’m very excited to have a bit more variety in what I’m able to do.

To date, my exercise routine has consisted of walks and riding my electric bike (or the stationary bike if it’s raining). I was doing some stretching and yoga, but this was very random (I wanted to do it but got bored of the same stretches over and over).

At the new gym I have access to an internal pool, aqua aerobic classes, body balance and mobilise (low impact stretching and weights) classes, and other gym equipment if I need it.

My plan is to use the pool twice a week, and try out the various low impact classes. In fact, I’ve already started…

I swam (8 laps of slow breast stroke) yesterday and today I tried out the Mobilise class. The class is stretching and light weights. I paced myself during the class; doing less repetitions, not using any weights and taking breaks when I felt I needed it. We’ll see tomorrow whether or not the class was too much for me but I think it was ok.

Outside of the gym, I’ll still ride at least once a week and go for walks with E (we’ve actually started playing that Pokemon Go game which has got us out of the house together more often).

Thanks to my current medication routine I’ve had less pain and slightly more energy than usual lately which has been great for allowing me to be more active.

What exercise do you do on a regular basis?

P.S. You may have noticed I didn’t post last week, because of everything going on at the moment I’m likely to be posting either once a week or fortnightly for the foreseeable future.

Moving…

Making choices, clearing room

Time to think, to stretch, to value, to love

Being present, living life

Over the last few months I’ve focused on building up my exercise levels to a point that I can maintain a consistent exercise regime including stretches, a relatively consistent step count, and regular bike rides on my electric bike. Moving my body with the aim of reducing pain levels and increasing energy.

I’ve also helped several friends and family members to move house. It’s been interesting to see the different ways people pack, how they prioritise what to keep, add or give away, and who they have to help them move. I am glad that although I physically couldn’t help much with any of the moves, I was there to support my friends and family.

My brain has been less foggy lately as well. Yes, I still have days that I’m crashed and everything is a struggle but in general I’ve had a clearer head. This has let me move forward on my projects, progress my study, and consider taking on new opportunities that fit my values and allow me to grow.

Everyone in life is moving in one way or another. In most cases though we’re all moving in many different ways all at once.

Physically, mentally and emotionally we’re always moving.

In what ways are you moving at the moment?

 

The year is going by so fast and we’re now a quarter of the way through it! I’m still working on slowing down and finding a pace that allows me to feel balanced and unstressed. By doing this I’m hoping to find a way to continue my slow upwards progression with my health and avoid any major crashes. Today though I’m focusing on Share Your World…

Share Your World – Week 13

Are you left or right handed? 

I’m a Leftie… and yes, I’ve heard most the jokes there are in relation to this.

If you had only one TV, would you prefer the TV in the living room or another room?

Because we have a projector rather than a TV, I’d prefer to have a separate ‘movie room’ with no windows to keep it dark inside. It would also help us to not necessarily eat meals in front of the TV as we do now, giving us more time to connect.

At the moment we have the projector in the living room and a small TV in the bedroom.

Have you ever participated in a distance walking, swimming, running, or biking event? Tell your story.

I’ve participated in a few events before getting sick including runs up to 12 km (there’s a local city to bay run that occurs annually), Relay for Life (a 24 hour walkathon for cancer), a 24 hour swimathon for the MS Society where we took turns doing laps as part of a team, and several rogaines (the longest being 12 hours).

None of these events have a particular story to share. I enjoy being active when my health allows it and prefer slow long stints than sprints.

Complete this sentence: Love is… truely being there for one another. Being patient, kind and caring, honest, supportive and tolerant of each others’ differences.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up? 

I’m grateful for the time I got to spend with my sister, T, and with E over the Easter long weekend. I’m grateful for my slowly improving health, which is now at a point I can participate in more social activities and start adding walks and rides back into my routine.

In the next week, I’m looking forward to completing a draft for the biodiversity trail project I’ve been working. It always feels great when I can cross something large off my to-do list.

Today I’m seeing my doctor to follow up on the side effects and blood test results. I’m feeling very frustrated with myself lately. Thanks to the side effects I’ve been struggling to do any work, even writing these Share Your World posts is taking me many times longer than normal.

Share Your World: Week 3

What is your favorite piece of art? (it doesn’t have to be famous)

I don’t really have an answer for this one as I tend to favour art work that has special meaning to me or that evoke emotion in me and there are several that fit that category. Looking around our house at the moment there are two that stand out to me…

The first professional photo of me and E. This photo was taken almost 10 years ago. Every time I look at it, it makes me smile and feel good inside.

This painting was a birthday present to me and E on our 30th birthday last year. It was painted by one of our friends and I love how simple it is. It hangs in our toilet and adds a point of interest to an otherwise boring room.

What made you smile today?

Watching the cats chase each other around the house. Cats can be very entertaining and also great therapy. When I’m feeling my worse and spend my time curled on the couch I love having them come and curl up with me.

Which place do you recommend as a Must-See? Please state which country, state or providence.

Dangar Island, NSW, Australia.

My Aunty lives on this wonderful island in the middle of the Hawkesbury River. It’s home to a few hundred locals while others have holiday homes on the island. Apart from the communal vehicles for maintenance and emergency services there are no cars on the island and you can only access it by ferry.

I love how peaceful it is on the island and the fact that there is such a communal feel.

Complete this sentence: When I was younger I used to….

hide in cupboards with my sister.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I was grateful for the opportunity to float in the ocean and spend time with family and friends. I’m hoping to make more beach trips this summer, especially given the fact that I’m meant to be doing more water based exercises at the moment.

I’m also grateful for having rediscovered my meditation mantra from last year, it’s been very helpful to me while I’m dealing with the extra symptoms and side effects.

May I/you be peaceful and true

May I/you have an open heart and open mind

May I/you be free from all suffering

This week I’m looking forward to getting some answers from my GP and taking the time to focus on recovering from the last weekend.

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?

As I mentioned last week, it’s National Pain Week in Australia this week. I will be sharing my story over at the National Pain Week website and at My Invisible Life later in the week. I’ll also be talking to local media, starting with ABC Riverland Today at 10:45 this morning.

Living with chronic pain can be frustrating, overwhelming and disempowering, however it is still possible to live a meaningful life while coping with it.

With over 2 years experience of living with chronic pain myself, and having spoken to many people who have lived with it a lot longer than I have, I’ve found many tips and tricks that have helped me live a reasonably quality and meaningful life despite constant pain and fatigue. Below I share my top 3 tips for living with chronic pain:

1. Listen to your body and pace yourself
2. Don’t stop researching and trying new things
3. Eliminate the unnecessary so you can focus on what is meaningful to you

Listen to your body and pace yourself

One of the first things I learnt on my journey with chronic illness is that my limits had changed. Before chronic illness I was a high achiever who had to always be doing something active and challenging. Since becoming ill, I still need to be doing something but I’ve had to cut back on the level of activity.

On a day to day basis I need to consider how I am feeling and plan my day accordingly. If my body has higher pain or fatigue levels than normal, or my brain is complete fog, then I know I need to step back and rest most of the day. If my pain levels are lower than normal or I’m feeling energetic (doesn’t happen that often but it could!) I need to remember not to push too hard or I will crash later on.

 

In general it’s best to aim for consistency and to allow your body to rest when it needs to.

To give you an example, I’m just coming out of a 2-week crash so my step count and activity level has been cut way back to an amount that i can maintain even if I’m feeling really bad. I have to minimise work and social activities and focus on resting. On any given day I usually only have one or two key activities lined up, which could be as simple as make a meal. While I was in the crash I didn’t really do any activities and most days were spent on the couch.

Don’t stop researching and trying new things

For many of the causes of chronic pain there is no known reason or cure for the pain. As a result there is usually always someone claiming to have the solution. Although it’s important to consider each solution offered to you carefully it is good to keep an open mind and try many different things.

What works for one person may not work for another.

I’ve tried multiple prescription drugs, none of which helped. In fact, most of them caused side effects worse than the symptoms they were meant to be helping. For other people though these drugs have helped.

I’ve tried (or I’m trying) physiotherapy, various exercise programs with guidance from an exercise physiotherapist, acupuncture, breathing techniques, a tens machine, and hypnosis.

Eliminate the unnecessary so you can focus on what is meaningful to you

Because of my limitations I have gone through phases where I’ve felt that my life had no meaning. To help me get over that I’ve had to focus in on what is meaningful to me.

I’ve worked on identifying my values and changing my lifestyle so what little energy I have is used doing things that fit with these values.

Since living with chronic pain I have taken up blogging so I can still contribute to the wider community, I’m focused on shopping and living as sustainably as possible, I meditate daily and practice gratitude, and I make time each week to spend at least an hour with family and friends.

I have eliminated my gym membership (I can’t exercise to that extent at the moment any way), full time employment (again beyond my limitations), and cleaning the house (we get a cleaner in fortnightly to do the major cleaning, and I’m slowly decluttering so there’s less to pick up and care for around the house).

Bonus Tip: Have Fun

I personally believe the most important tip I’ve been given on my journey towards a simple, sustainable and meaningful lifestyle while living with chronic pain, is to focus on what makes you happy and to have fun.

Tasks such as cleaning can be outsourced and when you have limited energy to contribute to society you are more likely to be happy with your life if (as in the tip above) you focus on what is meaningful to you and make sure you do at least one thing to have fun each day.

Whether it’s taking the time to look out the window and connect with nature, reading a good book or spending time with family and friends, it’s important to make time for fun in your life.

What tips would you give someone who was living with chronic pain and struggling?

When you live every day with chronic pain and fatigue it can sometimes be difficult to remember what it’s like to feel good, to feel ‘normal’. It’s important though to not focus just on your symptoms but to find at least something each and every day to be grateful for. Something that will make you feel as good as you possibly can given everything you’re living with.

I feel best when…

I feel best when I’m making a difference. When I’m able to find a way in which I can contribute something of meaning to the community. I currently do this by sharing my stories here on the blog and through other social media outlets. By sharing I hope to help others to live simple, sustainable and meaningful lives of their own.

I feel best when I’m able to pace myself well. At the moment that means:

• only working 1-2 hours a day, up to 4 days a week
• finding time each day to do some stretches and yoga
• maintaining a step count of around 5,000 steps a day
• ensuring I get adequate rest throughout the day

I feel best when I’m adequately hydrated. Remembering to drink enough water can be difficult when I’m at my most foggy, but I try hard to remember.

I feel best when I eat a balanced diet. Eating enough nutritious fruit, veg, nuts and meat, mainly eating home cooked meals with fresh produce and avoiding alcohol, dairy and gluten all help to keep me healthy.

I feel best when I have a project to work on that I’m passionate about. At the moment, my passion project is to try and build the sense of community on my street. Although I feel connected to my wider community online, I feel like I don’t really know my neighbours that well.

I feel best when I’m part of a connected community that supports one another and works together towards a simple, sustainable and meaningful lifestyle.

I feel best when I’m surrounded by supportive friends and family.

Yesterday I took the day off. Not only did I not allow myself to do any work, I attempted to completely avoid technology as well. As you’ll see below I wasn’t quite successful in this second quest but the day was still worth it.

Why take a whole day off?

It seems counterproductive when you’re really busy and have a lot to do to just stop and do nothing for a whole day but in reality it’s anything but that. When you don’t take the time to rest and switch off your productivity drops dramatically. Although you may always be doing something it can take you longer to do it and the quality of the work you produce may not be to your best standards if you are stressed and attempting to multitask too much.

By taking a day off to allow your batteries to recharge, you come back to the work with a clear head and focused on what you want to achieve. I find after taking a break I also tend to come back with a renewed passion and interest in whatever it was I’m trying to get done.

Another benefit of taking a day off, is it allows you to reflect on what you do and identify things that you do that are actually not being helpful and could be counterproductive. For example, I tend to crash out in front of the TV or browsing the internet when my brain fog sets in. If I actually take a rest instead I can return to my productive work quicker and with a clearer head.

A sample day of rest

As I mentioned above, and on social media yesterday, I took the day off and avoided technology to focus on rest and recovery.

What did my day look like?

6:30 AM – The cats woke me up

My husband is away this week, finishing a cycling tour of the Mawson Trail so the cats woke me instead to feed them. I managed to ignore them and get back to sleep for a while though.

7:20 AM – Up and feed the animals (cats and fish) followed by a 10 minute rest

7:30 AM – Breakfast

I made a container of coconut rice the day before so had some of that with fruit and honey for breakfast.

8:00 AM – Bath with a book (Seven Little Australians)

Due to pain levels on cold days I tend to spend a lot of my time in the bath. Yesterday was one of those days.

8:30 AM – 20 minute rest

8:50 AM – Snack

Because I was up so early, my energy levels were low so I had a few snacks throughout the day.

9:00 AM – 20 minute walk

This was a short but very slow walk around the block. Just because it was a day for rest didn’t mean it was OK for me to avoid all exercise. In order to manage my pain and fatigue levels I have to maintain a certain level of activity. In my normal daily life I currently don’t do any specific walks like this because I get my target step count or higher just doing tasks around the house. However, as I wasn’t doing housework I would not have met my target without a designated walk.

9:20 AM – Pot of tea and Journal

When I’m managing well I try to write in my journal daily, however life can get in the way. I hadn’t written in my journal since January so I spent some time reflecting over the changes that have occurred in the last few months.

9:50 AM – 20 minute rest

10:15 AM – Back in the bath with my book

As I said above, when the weather is cold and my pain levels high I tend to spend a lot of time in the bath. I don’t run a completely new bath though, just top up the water to make it warm again.

At this stage I actually finished my book.

12:00 PM – Lunch

For lunch I had left over pizza (gluten and dairy free) from dinner with friends the night before. At this point I did go on my phone for a little while just to get an update from my husband as to how their trip was going.

12:50 PM – 40 minute rest

This was my big rest for the day. On any day I tend to crash in the afternoon. I normally try to hold our until at least 1 pm, usually 2 – 3 pm then put the TV on and crash on the couch.

1:30 PM – Woke up and Snack

1:50 PM – Yoga

As well as my step count I do daily yoga stretches to reduce pain levels. This is mainly the pelvic stretches discussed in my routines post last week.

2:05 PM – Hot Chocolate and a book (Kitchen Table Sustainability)

This book could technically count as doing work, as the information is useful for the development of my ideas, but it is a book I’ve been trying to read for a while and as I’d finished my fiction book I decided to read some of this one instead of starting another new book.

3:15 PM – Clean Kitchen

I know it was meant to be a complete day of rest but I had come back the day before from a night away and had bags of food and cooking appliances that had been used while we were away. To be able to make dinner I had to clear the bench space so I washed the dishes and put away the food.

By this stage I was really struggling with just wanting to crash on the couch with the TV on. I had made myself a promise to have a technology free day so I held out on myself.

3:45 PM – Visit a Neighbour

As I was struggling with a desire to crash on the couch and just rest, I decided a day off was a good opportunity to begin to foster better relationships with my neighbours. I really want to feel like I’m part of a strong knit community but in the 7+ years we’ve been in our house I only know a few of the neighbours to the extent of waving hello.

Recently a friend’s parents moved in 2 houses up from us so I decided to visit them yesterday and introduce myself properly.

I spent 2 hours at their house having a cup of tea and a chat. I found out that my friend’s mother has fibromyalgia as well so it was great to chat to her about what she does to manage her symptoms.

** Confession time: The TV was on in the background while I was there.

6:00 PM – Dinner

I threw a few vegetables (onion, baby spinach, mushroom, capsicum, chilli and garlic)  in a pan to saute and gluten free gnocchi in a pot.

6:30 PM – Bath and book

By this stage I really just wanted to collapse in front of the TV or go to bed. I decided it was too early for bed and I was still attempting to avoid TV so I made myself read a bit more of my book in the bath. I found myself struggling to read though so I wasn’t in there very long.

7:00 PM – Attempt to go to bed

I was exhausted and thought I would fall straight to sleep but as usual I just couldn’t get comfy.

7:10 PM – TV ON!!!

After attempting to get to sleep for 10 minutes I realised it just wasn’t going to happen. Not only was it a little early but my husband wasn’t home. Normally when he’s not home I have the TV on for noise in the background when I attempt to fall asleep. I gave in and put it on.

I also ended up taking a sleeping tablet as I didn’t manage to get to sleep until after 1 AM.

As you can see, even a rest day can be busy. The idea though is to do activities that recharge your batteries, not ones that drain them further.

Although I didn’t quite manage the whole day technology free, limiting my exposure to technology did maintain my energy levels slightly higher than on a normal day filled with the internet, tv and phone.

Yesterday was the first day in many, many months that could be classified as an OK day for me (not bad or crash) so obviously I need to do this type of thing more often.

What do you do to rest?

Do you ever take a whole day to just relax and do nothing?

Like Megan’s last post, I will be sharing with you my 100 Goal Challenge. This challenge came about for Megan last year when she was reading a self-help book that focused on getting the reader to conduct activities that would help to identify your passions in life. The book is titled It starts with Passion by Keith Abraham and the idea behind it is to “do what you love and love what you do”.

The key to this challenge is that by writing down your goals, whether achievable tomorrow or maybe in the next few decades, you have identified the direction in life you want to take and inherently giving yourself something to strive for.  That drive in life is what makes you jump out of bed in the mornings instead of just rolling over wishing you could sleep for another few hours.

This will be once again a long post and I have, like Megan tried to break it done into categories to make it easier to work through. My 100 Goals are not just physical things that I want to do or achieve but also about creating and working towards the mindset and person I want to be, which I feel is just as important. What follows is my 100 Goal Challenge in no particular order of importance.

My 100 Goal Challenge List

 

House and Garden

1. Buy a house
   

   A plant from our garden – many more to be added

2. Have and maintain a garden
3. Make people feel welcomed and relaxed in our home.
4. Clean regularly – something I need to do after I finish writing this!
5. Build a garden from a patch of dirt.
6. Grow a herb garden
7. Cover the walls with our lives and adventures (art that is personal)
8. Grow a fruit tree
9. Renovate (or even build?)
10. Grow a veggie patch
11. Knock down a wall!
    

    All ready for some plants!

12. Build a wall.
13. Have a proper compost pile
14. Have a house full of laughter
15. Set up a rain water tank to recycle water
16. Have a functional and usable home
17. Spend more time in the garden to enjoy it.
18. Share my home with friends and family
19. Grow a hedge of fruit trees (espalier)
20. Set up a veggie patch with aquaponics

Travel

21. Visit each continent
    

    Plane wing from our last overseas trip

22. Travel to India
23. Go diving in the Great Barrier Reef
24. Put my feet in as many seas as possible!
25. End every holiday with a restort to relax.
26. Go on local holidays a few times a year
27. Climb a Mountain!
28. Don’t go on fast tours – stay in destinations
29. Go and see the Northern Lights
30. Honeymoon!!!!

Food

31. Cook and bake more for the enjoyment
    

    baking some cupcakes

32. Try new recipes every month
33. Eat less meat
34. Learn how to cook Indian
35. Make healthy snacks
36. Learn more vegan and vegetarian dishes
37. Cook a pavlova.
38. Eat more fruit and veggies
39. Learn how to make more raw dishes
40. Drink more juices and smoothies, every few days!

Fitness and Exercise

41. Maintain and increase my current level of fitness
42. Get to 10 000 steps most days
43. Go swimming weekly
44. Play a sport socially – always!
45. Be able to do 10+ push-ups without dying
46. Have a six pack once in my life
47. Get up before work to do exercise
48. Improve my tennis game – win more often!
49. Compete in obstacle courses (True Grit)
50. Try out running, as a habit.

Education and Learning

51. Never stop trying and learning new things
    

    Graduation a few years ago

52. Educate myself on finance
53. Get further certification / degrees
54. Research and implement further sustainable living
55. Stay open minded to ideas and technologies
56. Teach myself about soils, fertilizers and composting.
57. Learn more about photography
58. Learn nutrition
59. Learn massage and body movement
60. Learn aquaponics
61. Learn about myself and further my interests
62. Education in business management
63. Improve on self-confidence, projection and conversing

Mind Development

64. Listen, learn then form opinions
    

    spending time alone to reflect is productive

65. Approach everything with an open mind
66. Respond do not react.
67. Be more patient
68. Speak to my sister every week
69. Be more assertive
70. Value my own opinion
71. Spend time alone every week
72. Focus and remember the positive
73. Do not be afraid to disagree
74. Become more patient and giving with my parents
75. Be present where I am
76. Voice my opinion, especially when I don’t agree
77. Become aware of time constraints and be realistic in planning

Life…

78. Own a house

    

    just waiting to be ridden!

79. See parents once a week
80. Answer ‘yes’ or ‘no’ – ‘not yet’ is not an answer
81. Visit my sister a few times a year
82. Have children
83. Learn to ride a scooter (maybe a motorbike)
84. Fix my own computer once or twice
85. Laugh and enjoy the people around me
86. Hold dinner parties regularly
87. Catch up with friends more often
88. Save where we can but not at the expense of living
89. Go on more dates
    

    our cat – being sneaky

90. Use less chemicals
91. Declutter my home
92. Declutter my life
93. Go Abseiling / rock climbing
94. Skydive
95. Go in a hot air balloon
96. Find a work / life balance
97. Have more family pets (especially a dog)
98. House at least one Guide Dog
99. Read more – fact and fiction
100. Get Married!

 

Alright so that is my 100 Goals! It was hard to get started but once you do you’ll find that it just follows out. I’m also sure I’ve probably missed things but its written down for now and as I grow and change so will my goals.

Now the challenge is set! Go and get a pen and some paper if you have not already and start writing down your 100 Goals.

We would love to hear how you went so please let us know if you try the 100 Goal Challenge or if you have any suggestions for future posts.

Last week I discussed how pacing was one of the key recommendations from the International ME/CFS Primer for Clinical Practitioners. As has happened in the past I left my doctors appointment frustrated at the lack of understanding that medical practitioners here in Australia have about ME/CFS and treatment techniques. When I brought up the topic of Pacing, it was clear that my definition and my GP’s definition were not the same, and I struggled with trying to explain what I meant by pacing.

To my GP (who has a background in Exercise Physiology/treatment), pacing means the same thing as Graded Exercise Therapy (GET). This means that he believes it isn’t about me pacing myself so much as me following what others (my exercise physiologist) tells me know matter how I’m feeling at the time. This technique works for those suffering from depression or other physical injuries, possibly even for Fibromyalgia, but it does not work that way in ME/CFS. Due to physiological differences, people who suffer from ME/CFS react differently to exercise and pushing when feeling bad can lead to crashes and irrevocable damage to their systems (not in all situations but it is possible).

The other thing that came up in my doctors appointment that makes me feel a little frustrated was that his idea of how I can tell when I most likely will be better was based on the time frames of the pacing/GET. Based on how often we’ve currently been increasing my exercise levels, it’s still going to be a few years before I’m anywhere near better (10% increases have been occurring every 2-3 months). This doesn’t help me with feeling like my life is actually moving forward. I feel like all my goals (in particular starting to try for a family) are just on hold and won’t be achievable at the current rate of recovery given that E believes (and to some extent I agree) that I need to be healthy again before we start trying and we’re not getting any younger.

Luckily my Exercise Physiologist at the University Clinic seems to be slightly more up to date with what treatments affect our system and has told me to do what I can when I can. If I can only do a little bit just do that and don’t push myself too far.

So, after pushing myself too far over the last few weeks, I’m back at the point of identifying my current base line so that I can re-initiate some form of pacing and routine in my daily life.

By having a better understanding of where I’m at I’ll feel more confident about saying ‘NO’ to things that are going to push me too far past my current limits and will feel slightly more in control of my life (to what extent I can be) – At the moment I feel like I’ve completely lost control and don’t really know where I’m heading.

As of last Friday, I’m once again paying close attention to what I’m doing, how my body is feeling and what I still have to do. I’ve given myself permission to take things extra slowly while I reestablish my base line and I will then (very slowly) build up from there. I am also trying to reestablish my morning, lunch and evening routines to help me stay on track.

What are my routines?

Morning Routine

• Up by 8 am (lately it’s been 8:30 – 9:30 before I’m out of bed)
• Journal
• Shower and dress
• Breakfast
• Sort animals (including sweeping floor)
• rest
• Yoga (and on Tuesday, Thursday and Saturday my Exercise Physiologist workout)
• meditation
• blog/read/write/draw (MENTAL ACTIVITY)

Lunch Routine

• lunch at 12-12:30pm
• walk or bike ride (I’ve been taking photos of the nature around us (see gallery below for some) – it’s been such nice weather lately)
• rest/meditation

Evening Routine

• All electronic devices off by 8:30pm (including TV, phone, computer)
• Bath/Shower
• Read
• Meditation

Although I feel extremely guilty about having 2 baths/showers a day I’ve found it’s an essential part of my pain management strategy. When I skip one of them my pain levels increase by quite a bit. To alleviate my guilt a little I am trying to bucket out bath water whenever I have the energy to do it so that the water is reused to water the garden.

In between these routines I fit in any other activities that need doing such as appointments and my housework. Most days the morning routine takes me all the way to lunch time by the time I add rests in between short sessions of the last activity.

On Wednesdays I tend to have doctors appointments in the morning (and sometimes the afternoon as well) which replaces my mental activity and usually means the rest of the day is just resting.

How do I plan on Pacing?

Pacing appears to be key, both to managing my pain levels (from the Fibromyalgia and Pelvic Congestion Syndrome) and my energy levels so as to avoid or minimise crash days.

Over the last few months my number of crash days (where I can’t do much at all – I may push myself to do my exercises or some housework/an appointment – and spend most the day on the couch resting) have increased dramatically again. I thought it was as a result of increasing my Lyrica dose, but as I’m coming off that (I have a week to go) I’ve realised that even though that has played a small part I’ve also just been doing way to much and missing my rest breaks because of how foggy I’ve been lately. The Lyrica also seemed to have been blocking my tell tale signs that I’ve done too much, such as my sore throat and the slight increase in pain levels.

I am going to be pacing in two different ways:

1. Over a week or longer period I will be making sure my appointments and social events are spaced out enough that I have time to rest in between them. This will mean learning to say no to some events and learning to prioritise what is most important.
2. Throughout each day I will be listening to my body and adjusting what I do according to my symptoms. I will try to alternate physical and mental activities, as well as making sure I have rest breaks whenever my throat begins to get sore or my pain levels begin to rise (I’d like to do it before symptoms occur but I don’t want to go to the extreme of saying I’m going to do everything in 15-30 minute blocks – this would be the next step if I’m not able to pace myself based on listening to my body).

How do you pace yourself and do you have routines to make sure you manage to do the most important things?