I’ve been wanting to write this post for a few weeks now but have struggled to find time when Foggy Frog isn’t being a pain!
With so much going on, writing this post has been a good reminder to me that I need to remember to pace myself and listen to my body. Although physically I’ve been able to do so much more, I’ve found mentally I’ve been struggling the last few weeks.
This means it’s time to reevaluate again and find what I can step back from to achieve balance again.
Pacing is such an important part of my management strategy for the pain and other debilitating symptoms, such as the fog and fatigue. With the changes in my medications over the last few months my pain levels have been lower and, as I said above, I’ve been able to do more than I have in over 3 years.
I’ve joined a gym and have found that doing something most days (generally a stretching based class or a swim) has been beneficial for my pain levels as well. My step count is back to an average of 7,000; a level I haven’t managed since December 2014.
I’m still working on the Australian Association of Environmental Education Biennial Conference occurring in October, and my upcoming book launch on 24 September… less than a month to go! This has meant meetings almost every day about one thing or another.
As you can probably tell there’s a lot going on at the moment. In fact, it’s a little too much so I’ve been slowly stepping back from the conference planning and trying to work out what the essential things are for me to get done for the book launch to be a success.
I want to keep up my physical activity, as I’m trying to make sure I’m as healthy and strong as possible for when we start trying for a family (something we’re seriously talking about at the moment). So that means saying No to some of the other activities in my life.
Right now I’m saying NO to:
taking on any more for the AAEE Conference planning
to other volunteer opportunities that don’t have any connection to possible paid work in the future
meetings I can postpone until later
I’m saying YES to:
time with family and friends
actions that will progress the book launch
actions that will help me be healthier and stronger (exercise, diet, rest)
What do you say No to in order to say YES to the things that matter?
“(S)He’s just faking it to get out of (work/school/insert activity here)”
” It can’t be that bad!”
“It must be good to be able to do what you want, when you want”
“You just need to (exercise, eat this, do that) more/less”
1 in 5 people live with it but not many people understand it…
Chronic Pain
For the past 3 and a half years I’ve lived with a constant base level of pain, punctuated by periods of overwhelming and unbearable pain. Over that time I’ve heard many uninformed opinions and recommendations from strangers, friends and family, and even the professionals who are meant to be helping me. Sometimes I even judge myself, questioning if it really is all in my head. I’ve also heard stories from other people living with chronic pain that make the things I’ve heard sound trivial.
Statistics show that people living with chronic pain have a much lower perceived quality of life than the general population. I personally believe this is from the dual-impact of issues related to finding a pain management regime that actually helps and the psychological impacts of the myths and misperceptions surrounding these conditions which are invisible to those around us.
Let’s take a quick look at the Pain Management Regime issues. There are many drugs and treatment options out there that can be helpful, however none of them work for everyone. For many with chronic pain, there may be no known cause or cure. This makes it difficult to work out what you should be doing to manage the pain. To top it off, if you do find a drug or treatment option that does help in some way, it seems more than likely that there’ll be side effects that make the treatment option not really an option at all.
Now, the myths and misperceptions surrounding chronic pain can be extremely detrimental to the mental health of those living with it. The constant disbelief and judgement of others can make you question yourself and the way you’re handling your condition. What makes it worse is that, for conditions like Fibromyalgia, there are still doctors out there who don’t believe in it at all and others who believe it is all in the persons head. These doctors send you off to a psychologist or, even worse, they do nothing and inform you to just push through it.
What we need is a better understanding and more empathy from ourselves and from others. We need to find a way to raise awareness of the prevalence of these conditions, and to counteract some of the myths and misperceptions. It is my hope that if we can get more people sharing their stories we can make a difference. There are still many people out there who do ‘just push through it’ because they have no support around them and they may not actually believe it themselves. It is only if we work together to raise awareness and to answer people’s questions that we can change the way people view chronic pain and make people aware of how big a problem it is in today’s society.
After meeting with Dr Meredith Craigie on Monday to discuss the Foggy Frog and the Pain Gang Campaign, I have realised the gap there is in information and support for younger people living with chronic pain; especially in Australia. As such, my goal is to initially focus the campaign on supporting this younger generation through teacher and parent education, and establishing a support group and related workshops and resources for young people living with pain.
My ideas are still in very early development phase but I hope with the launch of the Foggy Frog and the Pain Gang Picture Book in September I’ll be able to announce at least the first part of this wider campaign.
I’d love your input…
What do you feel are important points for teachers and parents to understand if they are to support young people with chronic pain?
What would be your number 1 tip for living a meaningful and fulfilling life with chronic pain?
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…
After my swim on Monday…
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).
The view from halfway through our walk on the weekend
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.
I’m a natural at engaging with babies/younger children. When they’re really young, I can usually get them to settle in my arms. Older, they seem to be attracted to me and want me to participate in their adventures. I’m enjoying spending more time with my friends children these days and I really can’t wait until we’re ready to try for our own.
Would you prefer a one floor house or multiple levels?
Definitely one floor. Our current house has only one step down across the middle of the house but even that means I can’t just put Mr Vacuum on to run around the whole house… He just focuses on the bottom floor (kitchen, family room) most the time.
Mr Vacuum resting after cleaning the floor 🙂
I wouldn’t want to drag washing up and down stairs and everything is just so much easier on one level.
What was your favorite subject in school?
My favourite subject at school was music. I participated in school musicals and other events. It was a great break from the more serious maths, english and science I focused on all the way through to the end of year 12.
At university, I focused on subjects related to the environment and sustainability.
Complete this sentence: If only the rain.. came regularly year round. It would save me so much energy if the rain came regularly enough that I didn’t have to worry about watering 🙂
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 friends and their children.
In the next week I’m looking forward to catching up on some much needed work (supposing this relief from extreme fog stays – I can focus enough to do a little work again now).
There, I got that off my chest. I didn’t break my rules for the 20 week no buy challenge, but I did buy things I wouldn’t normally buy (they were on my to-buy list a long time.
If you’re a regular reader you’d be aware that I’ve yet again been trialling new drugs and suffering from very frustrating side effects that are impacting on my quality of life.
In particular, the brain fog (which I had got to manageable levels) has been so bad I’ve pretty much been unable to do any work for the last few weeks apart from attending meetings (listening but not contributing as much as I usually would) and writing here on the blog.
Yesterday, when I came onto the computer to do some work (I didn’t manage to actually do any work in the end)* I got completely distracted. Don’t ask me what distracted me because I honestly don’t know but somehow I ended up looking at sustainable living/baby related sites.
Our kitchen has several plastic and glass (pyrex) storage containers but as part of my journey towards zero waste I’ve been wanting to get my hands on some leak proof stainless steel containers for getting meat from the butcher. I also wanted to get my own spork to go into my zero waste eating out kit instead of transporting a cutlery set (i.e. cut my kit back to a spork, straw and napkin, along with my sandwich wrap, jar of snacks and stainless steel drink bottle for longer trips out and about.
My original zero waste eat out kit… spoon, chopsticks, straw and napkin. I want to replace the normal sized spoon and chopsticks with a reasonable sized spork (a more flexible tool with less to carry around)
On one of the sites I ended up on I found a good special on both of these items so jumped in and bought myself 2 stainless steel containers (with BPA free lids that seal and a removable divider inside) and a bamboo spork.
My zero waste purchases
I also bought my supplements online for the first time (calcium and folate), so now I’m waiting excitedly for my packages to arrive!
I’ve also started a list of things that I will need to consider buying in the near future. Because my wardrobe is now so minimal and I wear my favourite things most days, I’ve reached the point where things are starting to wear out.
Some of these things won’t be replaced, like the 2 dresses that reached the “I can see my undies through them” point in the last few weeks, because I have already decided I had more than I actually needed of these items.
I’m now down to 7 dresses. I wear dresses almost every day, all year round. Seven is probably still more than I need but as things wear out I consider whether I need to replace it or if something else I already own fills the same niche. I’m getting closer to the magical 33 Items recommended by Courtney Carver from Be More with Less in her Project 333 (I’m down to 36 items, excluding underwear, shoes, and accessories – scarves, jewellery, hats, etc).
Other things will need to be replaced, like undies. I bought 4 new pairs of undies from the local shops in July last year (bonds brand). These are already reaching the point where they’re starting to go see-through or holey. They’re also not very comfortable to wear anymore, riding up or falling down regularly.
My other 3 pairs of undies I bought online in March (2 months earlier) and they’re still going strong with no sign of being even close to worn out. They’re extremely comfy and actually function as pads (just add inserts) by themselves if you want them to. Last time I bought 3 pairs of the charcoal grey colour.
I want to keep some colour in my collection so I’m considering replacing the most uncomfortable ones I’ve got with more of the Maia Hipster Lunapanties but in other colours (one pair each of aquamarine, festival pink, and royal stripe).
The more uncomfortable ones are still ok at the moment, and the ones I want are reasonably expensive for underwear, so I’m going to hold off as long as I can (hopefully until the end of the challenge in 9 weeks).
I’m also going to need to replace my sandals at the end of summer. The inner lining tore the other week and although we have attempted to fix it the patch is already tearing as well so they’ll need to be replaced. I have worn them pretty much every hot day since October 2014 so I guess they’ve done their stint (probably equivalent to almost a year of daily wear).
I’m considering Birkenstock sandals like this or this because they’re meant to be long lasting, and sustainably and ethically made.
How do you decide when it’s time to let go of your favourite items?
*I have managed to do some work today which is great! I’ve been really stressed about how bad my ability to get things done has been, especially given I have commitments to meet.
I can’t believe it’s almost the end of January already and we’re up to week 4 of 2016!
So far this year I’ve been struggling to maintain my balance. If I look at it from a week or month point of view I’m doing ok but on a daily basis I’m still struggling. Some days are crashed on the couch and unable to do anything much other than listen to an audio book or the tv in the background. Other days I’m rushed off my feet trying to do appointments and out of the house activities… I haven’t worked out the balance there yet.
It’s difficult for me to work out how to do this properly because I see the benefit of not having to drive more than once or twice a week (it’s still an activity that wears me out a lot) but then it means those days I am out I don’t manage to pace my step count, I don’t get my usual rest breaks, and I just over do it in general.
I’m also struggling to get any sort of regular routine in place for work activities. I’d love to be doing at least a minimum amount of work each week but Foggy Frog seems to be my constant companion again and he’s making it very hard for me to do anything for more than 5-10 minutes at a time with any hope of having reasonable results.
How do you pace yourself with activities outside the house or with adding in any work?
Anyway, being Thursday today, it’s time for another round of Share Your World.
What one thing are you really glad you did yesterday?
Yesterday was one of those super full days where I over did it. That doesn’t mean there weren’t things I achieved that I’m really glad to have done though…
I managed to make it in to town to have lunch with E and one of his work colleagues before heading to the meeting I had in the afternoon. This is something that I really enjoy doing as it doesn’t happen very often these days unless I have a medical appointment in town.
Are you generally focused on today or tomorrow?
I do have a habit of focusing on things that I feel are important or scary that might be happening in the future but these days, thanks to the uncertainties related to my health, I’ve gotten a lot better at just focusing on one day at a time. Most weeks I don’t even look at my calendar in advance unless I’m booking something in. I might check it the night before when I’m getting ready for bed or when someone asks me what I’m doing.
Would you want a guardian angel/mentor? What would they tell you right now?
A mentor (or several mentors) provides inspiration, advice and guidance to help you succeed the best in life. Yes, I’d want that in my life and look up to several people in my life now as mentors.
Right now my mentor would be telling me to remember to be gentle with myself. As you might be able to tell from the last few posts I’m feeling very frustrated about my limitations at the moment. I’m wanting to do way more than my body will actually allow and I’m struggling to accept it. If my mentor was here right this minute they’d be reminding me that my health is the most important thing, without it I can’t do anything. They’d be telling me to continue to listen to my body and rest when I need to, to accept where I am at the moment, and to not set unrealistic expectations for myself.
Would you rather live in a cave house or a dome house made out of glass? (photos of the houses found on google search)
I love the idea of both but my dream house would be a dome house that’s built into the ground with lots of glass… something like this.
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 the wonderful people in my life. I realised in the last few weeks that I’m not going to meet my deadline for one of my consulting jobs. When I contacted the client to let them know they’ve been very understanding and said there is no rush and to just work on it as quickly as I can.
Being able to spend time with my friends has also been very satisfying.
In the next week I’m looking forward to talking with my doctors about some test results I got in the last week and hopefully getting some guidance on how to approach the issues that have arisen (More to come in an upcoming post on this).
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 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.
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.
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?
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?
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?
Liveken - my chronic life journey 