Ask Megan… Managing, Tracking and Reporting on Fatigue

image (c) Megan S, January 2014

A while ago I got an email from Claire at Living Being Doing with Chronic Fatigue Syndrome, she asked me the following question:

I’m investigating ways that people manage their fatigue, both as a record (for doctors/insurance, to measure efficacy of new treatments) and management – to make sure you don’t do too much on one day, to look at why you are more tired on certain days of the week/month/times of the day.
Do you have a chart, or diary, or list you could share with us? What format do you use?

I’d like to apologise to Claire for taking so long to reply! I’ve had other projects taking all my energetic times lately, but I’ve finally got to this…

How do I mange and track my fatigue levels to be able to see any change and/or report to my doctors?

I have a spreadsheet I use that has evolved over the past 7 months to be something manageable enough for me to keep up with and provide a reasonable level of data. This spreadsheet not only records my fatigue levels, but my pain levels and “other symptoms” levels as well.

I track my Muscle Pain, Fatigue, and “Other Symptoms” levels (on a scale of 1 – 10) three times a day; when I wake up, at lunch time, and just before bed. I also rate my overall day. I’ve set the spreadsheet up so it automatically calculates the daily averages.

Rating Scales

Symptoms Scale
0	No Symptoms
1
2	Some symptoms/can be ignored
3
4	Uncomfortable symptoms/ interferes with tasks
5
6	Need relief now/interferes with concentration
7
8	Things are getting really bad now/unbearable
9
10	Worst possible situation/death imminent

 

Day ratings based on how I feel
crash	can’t do anything above surviving/low level
bad	minimal functionality/struggling
ok	fairly functional
good	functional/manageable issues
great	functional/no issues

To start with I was also recording my activity levels every 30 minutes, but I found that was taking up way to much of my energy during the day.  Now, I pay attention to how my days are going and modify my daily activities based on my check-ins during the day.

So that’s it… That is how I currently manage, track and report on my health issues.

Do you have a way of managing, tracking and reporting on your health?

What tools do you use to do this?

 

Wisdom Wednesday: Passions and Dreams

(c) Megan S, December 2013

Today I want to talk to you about passions and dreams. No matter where you are in life you will always have at least one passion and one dream. These may change as your life does but they are always there.

My whole life I have been passionate about the environment and about caring for others. The form these passions took in my life and my dreams for my future evolved as I grew and changed as a person, but they’re still here.

Me and my siblings

As a child, my passion for the environment took the form of enjoying being outside playing in nature. I always wanted to look after any young children (babies) I saw and was always trying to help my younger sister and brother whenever I could.

As I got older, I got involved with volunteer work through St John Ambulance Australia and the St Vincent De Paul Society. I spent a lot of time learning about different animals and visiting the zoo, and would go for walks when ever I was stressed out or upset.

At university I want really sure what I wanted to do so I completed a double degree in Arts and Science which focused strongly on environmental topics. My volunteer work dropped off because I didn’t have time with study, work and a new found social life.

My working career so far has incorporated both my passion for the environment and helping others, through a strong focus on community engagement and education in all my sustainability roles. My dream was to get a property where I could run sustainability and conservation related workshops, seminars and camps for corporate, community and school groups.

Photo (c) Megan S, November 2013

Since becoming ill, the focus of my passions and my dreams have changed. I would still love to get that property and run those workshops, but I know it is not a viable option while I’m this unwell.

In the mean time, my current dream is to maintain some form of education around sustainability but to also increase awareness of these illnesses I’m struggling with.

My current passions are:

Creating and distributing sustainably made products through my sewing and card making.

Handmade wheat bag set currently available on Foggy Frog Creations Photo (c) Megan S, January 2014

Increasing awareness of Invisible Illnesses through the ‘Foggy Frog and the Pain Gang’ campaign.

Foggy Frog (c) Megan S, January 2014

As you can see, my underlying passions have not changed, but the dreams and the way these manifest in my current life have changed dramatically over time.

Real passions drive our lives. We may alter the way we interpret and embody this passions in our life, but if we are to be happy with the challenges our lives throw at us we need to make sure we are living in a way that fulfills our passions.

Our dreams may not become reality in the way we want or expect them to, but if we let ourselves be truly happy our dreams will come true!

Have you noticed a change in the way you are fulfilling your passions as your life changes?

What are your passions and dreams?

Nominate a Favorite Blogger (or Yourself!) for BlogHer’s Voices/Photos of the Year

The Daily Post

Did you read or see something jaw-dropping on a blog this year, or publish something you’re particularly proud of? Why not nominate it as one of BlogHer’s 2014 Voices or Photos of the Year? BlogHer recognizes up to 100 bloggers, and will select twelve to read their work aloud during the BlogHer annual conference-slash-10th anniversary celebration.

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Invisible Illnesses: Campaign to Raising Public Awareness

Foggy Frog (c) Megan S, January 2014

The image above is one of the early sketches of Foggy Frog that I have made for the “Foggy Frog and the Pain Gang” campaign.

This is a project created by the Spoonie Community (those of us suffering from invisible illnesses) for the Community. We aim to provide information and support; encouraging those outside our community to understand and make informed decisions as to how they act around those with invisible illnesses.

Please check out the campaign page to see what our mission is and how you can join in.

Mental Monday: Being Mentally strong with Chronic Illness

(c) Megan S, December 2013

The other day I reblogged a post entitled “Are you mentally strong?“. This post had a list from Forbes that outlined 18 things mentally strong people do. The list focuses on mental strength for professional people.

At the suggestion of Susan from Owls and Orchids, I’m writing this post to ask for your input in creating a list specifically for those suffering from chronic illnesses.

So, I’ll get us started but I’d love your input. This way we can share this through the Foggy Frog campaign as well.

Mentally Strong people with a chronic illness:

1. Focus on the positives in any situation. They focus on the little things that are going right rather than the constant pain or other symptoms.

2. Listen to their body. They don’t push their limits too hard.

What other points would you add?
What do the mentally strong people you know do?

Upcycling – The new buzzword

Upcycling is a good term to use to describe what I’m creating for my new Etsy shop “Foggy Frog Creations“. I try to do this with most things before considering recycling or throwing away.

upcycle

ˈʌpsʌɪk(ə)l/

verb

gerund or present participle: upcycling

1.

reuse (discarded objects or material) in such a way as to create a product of higher quality or value than the original.

The term upcycling is becoming more popular in today’s throwaway society as those who have had enough, find uses for items that others believe have no worth. In investigating this phenomenon I have discovered that upcycling is actually something that our grandparents used to do on a regular basis. During the great depression when money was scarce, many children wore clothes fashioned from the worn out dresses of their mothers and uses were found for just about anything.

(I wonder if at the time of filming Sound of Music, they would have thought that Frauleine Maria was a trendsetter when she upcycled the curtains in the children’s rooms into clothing)!
I’m sure my mother (who no doubt will…

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Physical Friday – Daily Activities

Today has felt like a very long day, and I don’t feel like I’ve achieved what I set out to do. I’m currently starting to crash so this will be a very short post…

This is a video I just recorded to give you a quick look into my daily activities and the impact they have on my life:

What are your daily activities like?

How have you been pacing yourself to allow an increase in activity over time?

Are you mentally strong?

An interesting post about how to be mentally strong.

Life Is A Beautiful Struggle

A wonderful, inspirational poem that demonstrates what we go through.

GIVE AWAY: handmade light weight wheat bag

So, I’m doing my first give away.

To go into the draw to win this beautiful handmade wheat bag, perfect for heating or cooling any painful spots you may have, all you have to do is LIKE my Facebook page, SHARE and COMMENT on the giveaway status on the page.

That’s it!

A randomly drawn winner will be announced 5pm CST on Friday January 31.