Tag Archives: awareness raising

Week 7 No Buy Challenge: Celebrations, side effects and PEM

19 Jan 16
Megan
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Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch... Water and tea, tablet and headphones, tv controller...

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

  • I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
  • High levels of pain down the inside of my limbs (especially my left leg).
  • Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?


Share your World: Week 2

13 Jan 16
Megan
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Balance… My word for 2016… is difficult to achieve. I’ve got many ideas for posts but, in an attempt to maintain my balance, you’ll find for the next few weeks at least you will only be getting 2 posts a week from me… My No Buy Challenge update and this, my Share Your World post (although I will probably add a bit of commentary to each like this).

Although I have been keeping it in mind each day I still managed to do too much last week and crashing again on the weekend.

This week I’ve begun trialling yet another drug (Cymbalta this time) to see if it helps me with pain and fatigue. Thankfully my doctor recognises that I’m sensitive to drugs so we’re starting at a very low 10 mg a day.

Share Your World: Week 2

Do you believe in extraterrestrials or life on other planets? 

I don’t believe in extraterrestrials in the sense of the aliens you see in many movies but I do believe that the chances of life (in some form) on another planet are quite high. Given how large the universe is I don’t see how this can be the only planet on which life has grown.

How many places have you lived? You can share the number of physical residences and/or the number of cities.

I’ve only ever lived in South Australia, but given that my parent’s divorced when I was young and we moved around a bit I’d say I’ve lived in at least 8 different residences (this doesn’t count any housesitting that we’ve done.

If you given $22 million tax free dollars (any currency), what is the first thing you would do?

The first thing I would do is pay off the rest of our mortgage and any other debts we may have. After that I’d look at how to invest the remaining money so that it could provide us with an adequate annual income and we can make our own choices about where and how we live, work and play.

The Never List: What are things you’ve never done? Or things you know you never will do?

I have never been sky diving, bungee jumping or probably any other extreme activity you can think of.

I will never stop striving towards a simple, sustainable and meaningful life in which I can make a difference and help others.

I have never

I will never give up on my dreams. Chronic illness may have taken away a lot of my options but I will always find a way around it.

 

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 understanding and support of my husband when I was unable to do everything I wanted because of my health and for the opportunity to discuss options and trial new medications with one of the leading pelvic pain specialists in town.

In the next week I’m looking forward to continuing my daily meditation practice (something I’ve taken up in the new year).

Balance #OneWord2016

04 Jan 16
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Last year I chose one word to guide me through the year… Enough.

I’ve recently found out from The Bloggess that there is a #oneword2016 Challenge and seeing I was already planning to choose a single word, I’ve decided to participate. The one word you choose is meant to be something that will help you focus on your main goal for the year.

Enough did that for me last year. There were many times when I felt I needed to do more or buy more items. Most of these times I remembered my word and felt better about only doing what I could or reducing the items I had rather than adding to them.

This year, I want to keep up the focus on the benefits I’ve received from Enough but focus more strongly on being able to increase (or at least better BALANCE) my activities.

I’m going to continue focusing on moving towards a simple, sustainable and meaningful life with a strong focus on finding ways to BALANCE my needs and wants. I’ll continue to try and single-task, try to get a good BALANCE of health, work, and social activities, and relaxation into my day/week.

If you haven’t worked it out yet, my word for 2016 is BALANCE.

I haven’t planned out the whole year but I have a lot that I want/need to achieve in the next 6 months so I’m focusing on that and trying to break it down into monthly and weekly activities…

In the next 6 months I need to:

  • Complete my current consulting jobs for different local Council’s here in SA:
    • Biodiversity Trails – due end of January
    • Environment Action Plan 2016-2019 – due April/May
  • Complete my Certificate IV in Training and Assessment – due by end of May
  • Publish Foggy Frog and the Pain Gang Picture Book – we’re so close but it seems to take so long to get it all together!

On top of these tasks, I have several appointments as part of the ongoing management of my health and I want to have regular time with family and friends and build up my casual work a bit as well.

As you can see, there’s a lot going on so it’s going to be an effort to find ways to balance everything and continue to pace.

Tomorrow, I’ll give you an update on how I’ve been going with the No Buy Challenge the last few weeks. Let’s just say now that I’ve realised there were a few things that should have been on the exceptions list that I forgot, so I’ll be updating that tomorrow.

Do you have one word that’s going to guide you through 2016?

“You’re looking good”…

10 Dec 15
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I’ve lived with chronic illness to some extent my whole life but for the last 2 1/2 years illness has been a major contributing factor in my life.

One thing I’m noticing more and more as I learn to accept, and live with, my chronic illnesses and the disabling symptoms they impose on my daily life is the innocence and ignorance of many who do not suffer from them.

It’s not only what’s happening in my life, but what I hear from others online and in person who are also suffering from invisible chronic illnesses.

The key word there is INVISIBLE…

Whenever I meet people in public I’m asked “How are you going?” or told “You’re looking good” and when I hear these things I never know how to reply.

On the outside I look like any other healthy person.

I walk normally most of the time (no obvious limp) although this can be difficult when I’m in a lot of pain or when the fatigue is so bad that my legs feel like lead weights. I look bright and happy (because I am happy) even when inside my body is screaming at me and my brain is in a dense fog.

Yes, I may ‘look good’ but I don’t feel good but I don’t want to be a downer for everyone around me so I don’t necessarily want to tell people I feel like crap.

How should I respond to these comments and questions?

I’ve seen different responses online from others going through the same thing.

Some people keep all the pain and suffering inside. They tell others they’re fine and try to ignore what’s going on then get upset and angry at the people asking the questions because they don’t understand.

Others tell anyone and everyone what’s going on with them. This can lead to people getting frustrated at you. People can begin to think you’re not really as sick as you say you are.

Personally, I think something in between is the best road to take. When answering questions or talking to people about our health we should take into consideration who we’re talking to and what their relationship is with us.

Even those closest to us don’t need to be constantly told what we’re feeling. Yes, they need to understand but we also need to understand it can be hard for them to cope, especially if you fell ill after you were close.

Responding to “You look good”

If I don’t know the person at all, I’d just reply ‘Thank you’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘Thanks, I don’t feel that good’.

If I’m close to them I might share more detail about how I’m feeling, especially if how I’m feeling will impact on what we’re planning to do together.

Responding to “How are you?”

If I don’t know the person at all, I’d just reply ‘Fine’ or ‘OK’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘As well as can be expected’. If they’re interested I might go into more detail afterwards.

If I’m close to them, I’d give a similar answer to above but would usually give them more detail.

How do you respond to well meaning but difficult questions and comments?

The Difficulty of Pacing: Work

03 Dec 15
Megan
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I’ve been so excited to hear from you all about your thoughts on the most recent A-Z guide to a simple, sustainable and meaningful life. One of the questions I’ve been asked to share more about is how work fits in to pacing with a chronic illness.

One reader in particular approached me with her current situation and I could see a lot of similarities so I wanted to talk about the issue in more detail.

This lady has ME/CFS like me. I’ll let her share her experience in her own words (modified for privacy):

I’ve been working on trying to get my activity level up for a while now but have only been keeping track of my daily steps for about a month. At the moment I seem to be averaging about 4000-5000 steps a day which I’m really happy with. I think a couple of years ago I would’ve been lucky to average 1500-2000. My main problem at the moment is that my step count is very inconsistent. It can vary anywhere from 2000 steps a day to over 8000 a day depending on the activities I have on.
I’ve now been back at work for just over 3 months… I’ve only been doing short shifts (3 or 4 hours) but these shifts involve being on my feet and walking around for most of the time. This makes it hard for me to pace myself and on a work day I don’t think it would be possible for me to keep my step count below 8000. I then find that the day after I have worked I’m exhausted and my step count is very low.
The issue here is the inconsistency. It’s something I can relate to strongly, on the days I need to go out of the house I tend to find myself doing double or more steps than on the days I’m home and can pace myself. I’ve also found it harder to avoid crashes since I’ve started working regularly.
My exercise physio has made it clear to me that the most important thing in order to avoid crashes is to be consistent. As the reader above stated, this isn’t always possible. It’s difficult to maintain a consistent level of activity when you have to do more on certain days due to engagements you can’t (or don’t want to) avoid, things like doctor’s appointments, work, important social events.
One thing I’ve done to try and help with consistency, is to consider it more on a week or monthly basis (rather than a day by day basis). That is, like the reader above, some days I do a lot more but I balance that out by doing a less on the other days.
I’m not completely happy with that approach though because some days I’m doing less because (like today) I literally have no energy left. What I’d like to do is find a way to pace so that even though I do more some days and less on others, I’m not doing the less because of crashes. I want to be doing it because I want to.
Pacing is about setting base levels and sticking to them for as long as necessary before slowly increasing them.
Since I’ve started working again, I aim to do a minimum of 5-8 hours a week. I break this down into smaller time slots. Some days this may be an hour at a time, other times (like today) it’s in 5-10 minute blocks…
I’m lucky in that most the work I’m doing I’m able to do from home and sitting down, but I still need to pace myself. I need to find the right balance of mental and physical activity to maintain my health.
In an ideal world, we’d be able to only work what fits with our health but in some roles (as with our reader) there are minimum shifts that you can do so if you’re going to work at all it’s likely to be too much to start with.
In response to the reader’s concerns I’d like to offer some advice…
If it’s possible to take short breaks, or even just ask for a stool at the counter (if you’re in customer service), that would give you a chance to pace yourself even within your shifts. However, knowing the area you are working in I know that the workplace isn’t always willing to be that flexible.
From what you’ve said to me it does sound like you are doing the best you can in your situation. It’s great that you’re tracking your activity levels and maybe you could look at working out what your baseline is.
How do you pace?
If you work, how do you manage the difficulties this can raise?

A-Z Guide to a simple, sustainable, meaningful life

01 Dec 15
Megan
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Thank you for joining us on this journey towards more simple, sustainable and meaningful lives.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

For more information on each point of the A-Z Guide, please click on the links below.

A-Z Guide

is for Acceptance

is for Budget

is for Community

is for Delegate

is for Enough

is for Faith

G is for Give

is for Health

is for Inspire

is for Joy

is for Know

is for Learn

is for Mindful

is for Needs

is for Outdoors

is for Pace

Q is for Quality

is for Reflection

is for Space

is for Transform

U is for Unplug

is for Values

is for Wonder

is for eXperiment

is for Yes

is for Zero

Have you taken steps towards a simple, sustainable and meaningful life?

Z is for Zero

30 Nov 15
Megan
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Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we have been exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Thank you for joining us on this journey towards more simple, sustainable and meaningful lives. Over the last month we’ve talked about a lot that we need to continue to work on over time if we’re to succeed. Today we finish up by looking at Z… Zero.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

Z is for Zero

A simple life is one in which we’re aiming for ZERO (or as close to zero as we can get).

We’re aiming for zero stress, disappointment and waste (time, money, things).

If we’re realistic we know that this isn’t doable but it’s good to set our goals high. Each and everything we’ve talked about over the last month are small steps towards achieving this goal.

My ZERO includes reducing the negative impact I have on both those around me and the environment. That’s because this fits with my values, it may not fit with yours.

My ZERO means trying to live by Bea’s 5 R’s – Refuse, Reduce, Reuse, Recycle, Rot.

My ZERO also means learning to compromise. My husband’s values may not be exactly the same as mine. At times I compromise on waste coming into our home to meet his values as well.

My ZERO means spending as much time as possible with my family and friends, helping others as much as I can through my work and what I do in my spare time, and spending time by myself to focus on healing my body.

My ZERO is a life in which I feel needed, loved, supported and cared for.

What is your ZERO?

Y is for Yes

29 Nov 15
Megan
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Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at Y… Yes.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

Y is for Yes

Say YES!

To looking after yourself.

Photo (c) E. S. January, 2014

Photo (c) E. S. January, 2014

To living by your values.

2013-11-22 12.09.08

To being the best YOU you can be!

Over the last few months I’ve made an effort to say YES to opportunities that have come my way. I’m being careful to try and keep pacing while I do this and I’m also giving myself permission to say YES to my health by saying NO to others when I need to.

By saying YES over the last few years I’ve taken up some exciting opportunities, including:

  • Creating the Foggy Frog and the Pain Gang picture book
  • Developing a 3-year Environmental Management Plan which will guide community sustainable actions within one of the Local Councils I work with
  • Developing educational biodiversity trails for local schools in another Local Council
  • Joining the executive committee for the South Australian Chapter of the Australian Association for Environmental Education through which I’m helping with organising and running a national conference later next year.

Without saying YES, I wouldn’t be doing any of these things but to be able to do them I also need to say YES to the following:

  • Pacing myself and resting every day
  • Eating as healthy as possible
  • Listening to my body

What do you say YES to?

Don’t forget that the Ultimate Spoonie Giveaway is now open. Sign up here for your opportunity to win! This giveaway has ended.

 

X is for eXperiment

27 Nov 15
Megan
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Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at X… eXperiment.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

X is for eXperiment

One non-formal way of learning is to experiment. Experimentation is essential for those of us living with chronic illnesses. For many of us there are no known cures (or even causes) for what we are dealing with. That means we need to constantly experiment with treatment options until we find ones that work for us.

Throughout my journey with chronic illness I’ve experimented with various drugs (antidepressants, lyrica, sleeping tablets, other pain relief). I’ve experimented with natural alternatives like the TENS machine, accupuncture, yoga, massage, meditation and visiting a naturopath.

I’m constantly experimenting with different routines, sustainable lifestyle options (like cloth toilet paper and napkins), and new healthy recipes.

homemade cloth toilet paper

homemade cloth toilet paper

Finding what brings you joy and wonder, and what you’re good at is only possible by experimenting with different ideas.

What experimenting do you do in your life?

 

W is for Wonder

26 Nov 15
Megan
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Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at W… Wonder.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

W is for Wonder

Like Joy, Wonder is an important feeling to have in life. It’s also a feeling that is surprisingly hard to find, especially when things aren’t going right in your life. Think of some times when you have felt it, or when you can focus on finding it.

Take the time when being mindful to find wonder in the world around you. Wonder can be found in the smallest things…

The feeling of the sun on your skin as you sit in the garden…

The smell of the flowers…

The taste of a fresh cup of tea…

Without wonder, I wouldn’t learn so much. It is what encourages me to keep researching and learning. It helps me through the tough times by giving me something to focus on.

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