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?
Imagine waking every day and being unsure about what you’ll be able to achieve that day. You may wake up to pain levels so high that even rolling over in bed is too painful, or maybe your energy is so low that you can’t even get your eyes to open properly…
Maybe, like me, you don’t need to imagine this at all. Maybe you live with a chronic illness that makes your life unpredictable and very VERY frustrating.
When you have a chronic illness it can be quite easy to be hard on yourself for all the things you struggle to do, or simply can not do, on a daily basis. These things can be as simple as taking a shower or brushing your teeth. Things that others may take for granted.
One tool that I’ve learnt to have in place to help me and my extended family and friends cope better with my multiple chronic illnesses is to find a way to separate myself from the illness. When I’m unable to do something, I (usually) remember that I shouldn’t be angry or frustrated at myself. It’s the illness and it’s symptoms that I should be angry and frustrated at.
A great way I’ve found to separate me from my conditions, is to personify my illnesses (or at least the main symptoms I face). The characters I’ve created are Foggy Frog and the Pain Gang. By personifying my symptoms in this way I can say things like “it’s Foggy Frog that is making it difficult to make a coherent sentence today” or “Stabbing Spider that has taken my breath away.”
Having this separation between myself and my illness helps me keep a positive and open attitude towards my life. It gives me room to focus on the things I can do or the things around me that I can be grateful for. I can focus on all the things I am; I aim to live as simply, sustainably and meaningfully as possible. I am passionate about working with others. I am a loving wife and caring friend. I am an advocate and an educator. I am not just my illness!
The separation also helps with my relationship with my husband. When he’s frustrated at what I can’t do, we can both be angry and frustrated at the illness and I don’t feel the need to take things too personally. We are able to talk openly about how we feel and, as long as we can maintain the separation between me and my symptoms, the anger should be aimed at the illness and not me.
The idea of separating yourself from your illness is generally discussed from the point of view of mental illness such as OCD, Schizophrenia, Bipolar or Depression, but I’ve found it useful living with physical conditions such as Myalgic Encephalomyelitis and Fibromyalgia and I’m sure it can be applied to many other conditions.
Chronic illness makes life difficult at the best of times. Having to deal with both constant and unpredictable symptoms can take a major toll on your self esteem and general mental health. However, by separating ourselves from our illnesses we can nurture a healthier relationship with our bodies, our lives, and our families that will allow us to remember who we actually are. We are not our illnesses.
What techniques do you have in place to separate yourself from your illness or to otherwise maintain your mental health?
This morning I was reading a post from my friend Julie Ryan over at Counting My Spoons where she shared a bit about the rough times she’s going through at the moment and how she’s trying to cope with them.
A lot of what she’s talked about in that post, slowing down and focusing on perspective and a positive attitude, are things that I’ve found have worked for me when learning to live a more sustainable and meaningful life with all the symptoms of a chronic and invisible illness.
I’ve found that, as I’ve learnt to cope better with the constant fatigue and pain that accompany me on a daily basis (hello Foggy Frog and all your friends), my illness seems to become even more invisible.
When the pain first struck it was obvious to everyone around me that something was wrong. I wasn’t able to function at all, I was scared because I didn’t know what was going on, and my body language made it clear I was in pain.
These days it takes a lot of pain and very high fatigue levels for me to look sick. Having accepted what I have to live with on a daily basis, I’ve learnt to ‘ignore’ the pain and the fatigue by focusing on what I can do and simply not thinking about it too much.
These days when I’m out I’m often greeted with ‘you look well!’, ‘it’s good to see you looking so healthy’, or other statements to that effect from people who know me. Inside I might still be feeling like I’m dying but on the outside I look perfectly fine.
This facade does crack occasionally when I overdo it, and those who have seen the sudden change often remark that I looked well one second and the next I looked like I had no energy at all.
What does all this have to do with working?
In most work places you have at least some face to face interaction with other people. People also expect you to look healthy while you’re at work. If you go to work looking like death warmed up you’re likely to be sent home!
I’ve found that being able to slow down and focus on the positive aspects of my life I’m better able to cope with change and with the pressures working puts on me.
Many with chronic illnesses have to work. These people have no choice but to do something in order to have enough money to provide themselves, and sometimes their family, with basic requirements such as food, shelter and clothing.
Others are supported by their family or were lucky enough to have already saved enough money to retire and focus on their health. However, these people still need to feel like their contributing and are ‘worthwhile’.
Personally, I’m lucky enough to be supported by my husband. I work because I want to be doing the work not because I need to in order to survive. I ‘need to’ work in order to maintain my own sense of self-worth and to feel like I’m making a contribution to society.
Because of my own personal situation, I can choose the type of work I take on. At this point in time, half the work I’m doing is voluntary (unpaid work).
The benefit of starting with voluntary or very casual work is the flexibility. Although I still feel guilty occasionally for not doing what I wanted to get done I can just step back and say sorry I need a break if things get too difficult for me. Thankfully I’ve only had to do that a few times so far and I believe that’s because I am taking steps to allow my health to come first.
Building up gradually. I didn’t jump in head first into working after I reached the point I felt I was capable of it. Instead I started with as little as half an hour to an hour a week and slowly built up from there.
I have had set backs along the way but overall I’ve been slowly improving my health and increasing my activity levels. Set backs are, I believe, inevitable when you live with a chronic illness.
Understanding the fluctuations in my health. As I said, I believe set backs are inevitable with chronic illness. My health often fluctuates. Sometimes I can predict it and sometimes I can’t, the important thing is to listen to my body and stop when I need to. The changes in weather through the seasons causes my pain and fatigue levels to fluctuate. Knowing this, I can make sure I don’t schedule too much in the first few weeks of winter and summer (the 2 seasons I’m affected the most). For me, understanding this has been an important part of pacingmy activities.
Scheduling rest. Especially early on in my illness, my main tool for pacing was to have set rest periods and starting with very small amounts of activity broken up with larger periods resting. Today I don’t ‘rest’ in the same way I did when I was first ill. Back then I actually slept during the day a lot. These days, unless I’m having a crash and literally can’t keep my eyes open, I try not to sleep during the day at all. My rests are now periods of meditation, listening to audio books or lying in front of the tv (tv used to count as activity when I was really struggling).
Setting goals and keeping a To-Do list. Living with Foggy Frog as a constant companion, I often struggle to remember things. This can be very frustrating so I now keep an ongoing To-Do list that I can check regularly and mark off what I achieve. I also break down any big goals (such as my work projects) into smaller steps so that I only need to focus on one thing at a time.
I aim to be realistic about the timeframes I give myself for projects and To-Do list items. For example, most days I’ll only set myself 2-3 small items to achieve. If I do more I add that as I go but as long as I can mark something off my list each day, I’m generally happy.
This week my focus is on the Foggy Frog book. Yesterday I sent out the survey to allow backers to vote on the cover design and today I’m writing my blog posts. Over the last few days I’ve sent some emails to prominent people asking if they’d like to preview the book and provide comments. The rest of the week will likely be spent following up on publishing quotes and the emails, and beginning to plan the book launch.
How do you slow down and focus on perspective to minimise crashes and maximise your success at work?
Back in December of last year, I answered a reader’s question about pacing and working. In this post I talked about some of the issues we face when we’re attempting to work with a chronic illness. We talked about our inability to be consistent and some simple tips and tricks for trying to avoid crashes as a result of working.
It’s been about 6 months since I wrote this post and in that time I’ve been gradually increasing the amount of work I’m doing myself. I’ve been very fortunate that, although I was unable to keep the job I was in prior to my first major crash, I’ve been able to use the connections I’d made when I was working full time to get establish a very flexible working environment for myself since then.
Back in 2013, I was working full time, studying full time and exercising every day (daily walks and gym at least 3 times a week). That all stopped suddenly when I woke up with pelvic pain so bad that I ended up in the emergency department all day while they tried (and failed) to work out what was causing it. I took a few days off on sick leave and then attempted to return to work even though the pain hadn’t gone and the fatigue was getting worse by the day. Obviously, that wasn’t working so I was yet again on leave.
At the time I thought it’d just be a few weeks and I’d feel better and be back at work. I had test after test to try and work out what was wrong with no clear results. As the weeks dragged into months I began to despair that I would never be able to get back to work.
Overall, I had almost 2 years without working at all before I got to a point where I felt confident with my ability to maintain some semblance of consistency and began to look at returning to some form of part time work.
Initially, I attempted to return to my previous role in a part time capacity, however my employers weren’t keen to take on the liability of having me there if I was to get worse again once starting back at work so I began to look into other options.
I have always wanted to work for myself and both E and I saw this as an opportunity to see how I would go with self employment, however I still wanted to have some form of ‘regular’ income coming in.
While looking at self employment opportunities, I approached an old boss to see if he had any casual work available for me to do as a means of seeing how I go with adding work back in. He did and he’s been great ever since then. Originally I thought I’d be able to build up to 8 hours a week of work for him within a few months but I quickly learnt that this wasn’t realistic. To this day, I sometimes manage that level of work for him but most weeks I only manage an hour or two a week (and some weeks none at all).
Having a boss who has been aware of my limitations from the start and willing to be flexible about how much work I take on has been great. I take on the jobs that don’t necessarily have a fixed deadline as they’ve been waiting for so long for clients to provide their data and so it’s not a big concern if I’m unable to complete them as quickly as I’d like. I’m also able to work from home which is a huge benefit as the few times I’ve attempted to head into the office to work, I’ve ended up paying for it after.
Although I like the fact that this work is paid by the hour, I’m able to work from home, and my boss is extremely flexible, it’s not the type of work I’m really interested in doing long term. This is where self-employment has come into play.
I’ve got two distinct areas that I’m working in from a self-employment perspective, both of which I’ve joined together under the LiveKen banner.
The first, and at the moment the largest (bringing in the most income), side of the business is environment and sustainability consulting work. I reached out to my contacts at the local councils to see if anyone had small manageable projects they needed a consultant helping on. I made it clear that my biggest interest was in developing and delivering workshops for the community around living simple, sustainable and meaningful lives but that I would also consider research based projects that fit within my skill and knowledge base. From this initial call out I got two projects:
Developing a 3 year Environmental Management Plan for the City of Prospect. This has been a large and ongoing project and we’re about half way through the process now a year on from when we initially started. It’s been a great project with lots of community and staff engagement.
Developing a series of Biodiversity Trails for local schools within the Campbelltown City Council. This was also a large project for me and took me much longer than I expected to complete thanks to the ups and downs of my health.
From doing these two projects I’ve learnt a lot about my current capabilities and about the processes and people I need to have in place if I’m going to be successful at working for myself and delivering projects on time and within budget for my clients while maintaining (and if possible improving) my health.
I’ve learnt that when proposing timelines for larger projects like this, I need to schedule in additional time than I think it will take me to allow for crashes and other health related delays. It’s also good to have someone lined up as a backup person (a subcontractor) to complete the work if my health gets to a point that I’m unable to do it.
These two large projects have also led to a few workshops with schools and the Council libraries on topics such as revegetation and up-cycling materials. These have been great for me because, although they don’t pay as well, they have a clearly defined timeframe and allow me to connect with a large group of people within a short space of time. I do need to make sure I schedule time to rest both before and after these workshops but because there’s no ongoing ‘stress’ related to completing them, I seem to recover quite quickly afterwards.
The second branch of the business is invisible illness advocacy. This actually started before I’d established LiveKen, with the idea of a picture book about invisible illnesses and chronic pain. The successful Kickstarter campaign we ran for the Foggy Frog and the Pain Gang picture book, has allowed me to focus on finishing the pictures with the knowledge that I will be able to publish and over 100 copies of the book will be going out into the hands of people who live with an invisible illness to share with their friends.
This is another project that has taken me MUCH longer than I expected it to. We are finally at the point where I’ll be getting quotes for printing within the next few weeks so keep your eye out for more information about this in the next month or so. The plan is for the picture book to be the first step in a larger awareness raising campaign.
This post is getting quite long, so I might stop there today and do a detailed hints and tips post later.
What tips or tricks do you have for working with a chronic illnesses?
I meant to do this post last week for May 12 International Awareness Day but brain fog made me forget the date and I didn’t have the energy last week to write it anyway so here it is today…
A little background for those of you who haven’t been following me for very long. For over 3 years now I’ve been living with chronic pain and fatigue as my daily companion. I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Pelvic Congestion Syndrome.
I’ve already done a day in my life post, since then I have improved to the point that I try not to nap during the day any more.
What I do in a week
The following is what I did in the week starting Monday 9 May… It gives a good idea of what I do most weeks. The types of appointments and work I do varies week to week and the number of crash days also varies.
Monday
I wake up slowly at around 8:30 am noticing the heavy and aching feeling that’s always there. After stretching in bed and slowly getting up I measure the 0.5mL of testosterone cream and rub it into my leg and then slowly get dressed.
After getting dressed, I sit back on the bed and spend some time checking my emails and my to-do-list, and waiting for the heaviness and shakiness to settle enough to get up and make breakfast.
I’m feeling rather out of it today so I take my time doing my weekly budget review and spend some time online reading blogs. The fact that the weather is very wet and cold today doesn’t help my pain levels. I decide to hop in the bath and read until lunch time.
Being a Monday, it’s my day to do a bike ride. Before having lunch I decide to do a 10 minute easy ride on the stationary bike in the shed because it’s too wet to go out. I reheat leftovers and put the tv on while I eat lunch.
I’ve got some work I have to do today so I spend most the afternoon doing that. Again, tasks that would normally take half an hour to an hour to do are taking me over 3 hours.
Before long, it’s 5:00 pm and my brain is like mush, I put the TV back on and only get up to make a simple dinner and to do some stretches because my pelvic pain is flaring tonight.
At around 9:00 pm I get up, take my pills, have a shower and head to bed. In bed, I take some time to review my daily to-do-list and write a short list for tomorrow. Lights out by 10:00 pm.
Tuesday
I don’t wake up until 9:00 am today. Before even getting out of bed I decide to check my emails and my to-do-list because my body doesn’t want to cooperate.
Today I’m heading to my mum’s to help her with her assignment so after getting dressed and having breakfast I drive down there. Most of the day is spent helping mum. When we finish going through mum’s assignment in the afternoon, we go for a short walk and then I sit down and do my weekly blog posts before attending an online meeting for the conference I’m helping to organise.
By the time the meeting ends my sister has got home from her school placement and we head into town for dinner with E and a few friends from his office. Because E was drinking, I drive us home at the end of the night (that doesn’t happen very often).
It’s a late night out for me but I’m in bed by 10:30pm
Wednesday
Ok, so I did a bit too much Tuesday and that time of the month is starting so pain and fatigue are very high today.
It’s definitely a crash day which means I spend most the day in front of the tv not doing much. I do make myself do my 10 minute ride on the stationary bike because some movement helps with pain levels and I order a few things I need online (cat food and my calcium and magnesium supplements). I also prepare the dough for baking bread the next day.
I shower both in the morning and the night to help with pain. In bed by 9:00 pm.
Thursday
I’m awake at 9:00 am. Fatigue is slightly lower today and I do have a doctors appointment I need to go to. The day starts with a shower and breakfast. I also throw the bread in the oven to bake.
Before heading to my doctors appointment I throw on a load of washing. I drive to town and visit my doctor to get a script I forgot to ask for in my check up the week before. After that I buy lunch and eat with E in his office before I drive home and hang out the washing.
The rest of the day is spent resting in front of the tv, until I shower and head to bed again at around 10:00 pm.
Friday
Up at 8:30 am today and I do feel slightly better today. Dad’s over for lunch today so that takes up most my day.
I do manage to send an email out inviting people to a meeting next week for the conference organising stuff and to do a short ride on the stationary bike and a short walk with my sister who is over for dinner.
In bed by 10:15 pm.
Saturday
After getting up at 9:00 am I head down to mum’s and spend most the day out with my sister op-shopping. I know that I’m doing too much today but I’m enjoying a day out with T while I can.
some of the books I picked up on our op-shopping tour.
In the evening, E makes dinner because I don’t have any energy left and I’m in bed by 9:30 pm.
Sunday
Up at 9:00 am today and throw on a load of washing straight after breakfast. I then sit down and rest for a while before baking a cake. The whole morning is broken down between baking, washing, and doing low energy activities like reading blogs.
I reheat left overs for lunch and then read some of the children’s books I bought yesterday until E’s family comes over for afternoon tea.
I also spend some time prepping for baking bread on Monday and putting together some lego.
I have a bath in the evening after dinner as I’m feeling very achey and end up in bed late at 11:00 pm mainly because I relax too long in the bath.
That was my week last week.
As you can see, my days vary a lot. This was a fairly busy week for me as there were a few days in there where I wasn’t able to have any rest breaks throughout the day at all. That isn’t typical but the rest of it is. I try to find a way to balance work, social, exercise and rest each week.
As well as catching up with friends on the first night, we spent a fair bit of time alone on the beach near our Ecopod accomodation. I was glad I had the energy for walks along the beach and really enjoyed just sitting there listening to the waves and watching the birds go by.
We had wonderful weather while we were travelling on the Friday but the weather started turning on the Saturday, with most the day being drizzles, clouds, and wind. Before it got too wet we walked along the beach and then spent most the afternoon playing games and listening to audio books in our accomodation while listening to, and watching, the weather change outside.
I was grateful to come home on Sunday though as the weather took a nasty turn that night with plenty of rain over the last few days!
Just a short post today, as I’m recovering from the business of the weekend! Enjoy some nice photos from our trip. These are just ones I took with my phone, I’ll share some of the ones E took with the camera in future posts.
A few weeks ago I read a post by Mer over at Knocked over by a feather about 50 little things. It got me thinking about writing my own list…
50 random things about me
I’m passionate about living a simple, sustainable and meaningful life with my illnesses. I do this by making as many things as I can at home, focusing on things that fit with my values, and making sure I prioritise spending time with my family and friends.
My favourite colours at the moment are blue and green.
I have only ever dated E, and he’s only ever dated me 🙂
Even though I’m limited by my health, I still enjoy going for walks in nature when I can.
Nortriptyline has helped reduce the number of crashes I have. Base level pain is still the same but I can do more before it gets worse.
Foggy Frog is a constant companion. I may be getting more time where I’m in charge lately, but he keeps reminding me he’s there. Today for instance, I tried to start the car with the house keys and couldn’t work out why the keys wouldn’t fit in the lock.
Sourdough bread is so simple to make, I’m not sure I’ll bother buying bread very often any more.
I hardly ever wear heels any more. Summer I mainly wear my sandals and winter I mainly wear my Camper boots.
I did solo singing as part of my Year 12 studies and performed in school musicals whenever I could at school.
I do acupuncture every 3 weeks to minimise pain levels.
Before getting sick, I would classify myself as an exercise junkie. I went to the gym after work almost every day and I’d walk everywhere I could.
Our two adorable kitties keep me company most days.
Pepper, keeping me company while I have a nap. Photo (c) E. S. January, 2014
We’ve adopted a worm farm from friends who have moved interstate.
If you came to visit us, you’d likely comment on the amount of Lego in our house.
I’m working towards a zero waste life. We haven’t put anything in the general waste bin in over a fortnight, the inside bin is not quite half full and so has not needed to be emptied.
We go camping more often than we stay in hotels or bed and breakfasts.
I like to be prepared. Before we got engaged, I’d already started thinking about ways to make our wedding as sustainable as possible. Today, I’m already researching pregnancy and parenting tips (both for doing things as sustainably as possible and with chronic illness).
My wardrobe is down to less than 50 items, and still shrinking…
I’m on the look out for Birkenstock’s in my size… Narrow 39… in either white, blue or grey for a reasonable price.
I love making things… sewing, baking, growing, building 🙂
I’ve never been good with band names, but I really like music from the Beatles, Red Hot Chilli Peppers, Green Day, and many others…
My first overseas holiday was a trip to New Zealand with E.
I’m a life member of the Royal Zoological Society of South Australia thanks to a wonderful birthday present from my dad for my 21st.
E and I have been together 13 years this month.
I’m intolerant to gluten and dairy, and allergic to yeast, cats (yes, we own 2), wool and grasses.
We are currently experimenting with adding gluten back into my diet. Sourdough (homemade with long fermentation period) appears to be ok, and we’re going to try slowly adding other glutenous items in.
We have a cleaner who comes fortnightly which allows us to keep the house at a reasonable level of cleanliness.
We have an orange tree, lime tree, mulberry tree, nectarine tree, apricot tree, peach tree and 3 apple trees in our garden.
My electric bike helps me get out and about without wearing myself out too much.
Life with a chronic illness is difficult but it can still be fun!
I focus on being grateful for the things I can do and not focus on the things I can no longer do.
I’m currently trialling Testosterone cream, so far no obvious improvement but, after a follow up blood test, I’ve been asked to double my dosage for the next month to see if that improves things.
Dairy free dark chocolate is one of my favourite treats.
I own stainless steel straws and cloth napkins.
Today I bought a 12.5kg bag of flour!
Experiences over things… where possible I try and allocate my money and my time towards experiences I’ll remember, rather than things that’ll just catch dust.
It’s been over 3 years since I last had a day with no pain at all.
This year I’m aiming all presents from me to be homemade, consumable/living (e.g. food or plants), locally made, secondhand or fairtrade. So far this year I’ve made placemats and napkins, and bought plants and chocolates.
The No Buy Challenge is over, but Share Your World continues each week.
This week I have made one big purchase (new undies from Lunapads) but other than that I’ve stuck to my No Buy guidelines even though the challenge is ended. I knew before the end of the challenge that I needed to get new undies so it was a planned purchase. I think I’m going to keep trying to think through purchases for at least a day before making them if they’re over $50, if it’s less than $50 I’ll consider for at least 1 minute before deciding to make a purchase if it’s not an essential based on my No Buy guidelines. This should hopefully avoid any impulse purchases.
Share Your World – Week 17
When writing by hand do you prefer to use a pencil or pen?
I tend to use a pen, just because I don’t need to worry about sharpening. However, just because I usually use a pen, I’d actually prefer pencil because being left handed I always end up with ink all over my hand whenever I write.
What’s your choice: jigsaw, word, maze or numeric puzzles?
I’m not really a big jigsaw person but I do a combination of word, maze and numeric puzzles on a regular basis.
Do you prefer long hair or short hair for yourself?
I don’t really have a preference, or at least it constantly changes over time… I prefer either LONG long hair or pixie-style hair. At the moment, I’m trying to grow my hair out from a pixie cut over a year ago. It’s currently to my shoulders.
List five some of your favorite blogs.
I read quite a few blogs. At the moment I’d say my favourites, in no particular order, are:
Treading My Own Path. Lindsay writes about living and eating sustainably, minimalism, plastic free and zero waste.
Baby Steps Going Green. Candice has been blogging for almost a year now. She shares the simple steps she’s taking towards a more sustainable life. Like many sustainability bloggers at the moment, there’s a strong focus on zero waste and minimalism.
A Southern Celiac. Brittany lives with Celiac disease and Ehlers Danlos Syndrome. She’s currently pregnant and has also suffered from Myasthenia Gravis throughout her pregnancy. I love hearing about her life with her husband Justin and the many animals they live with.
My Journey Thru ME. Jess writes about her life with ME/CFS. She shares what helps her and how she manages to pace.
Counting My Spoons. Julie provides information and inspiration for those of us living with Fibromyalgia.
Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?
In the last week, I’m grateful for having the energy to help my friends and family with their moves, for a long weekend and more time with E.
In the next week, I’m looking forward to seeing what happens. I don’t have much scheduled so I can take each day as it comes.
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.
I was going to share how my first attempt at making sourdough went on Tuesday, but that post ended up so long already I decided to save my update until today.
Sourdough Update
Last week I let you know about the starter that I had made for homemade sourdough. I decided that I didn’t want to wait any longer to see whether I could eat it so on Thursday I began the long process of making my first 2 loaves of sourdough bread.
I followed the process used by the Zero Waste Chef but using flours I had at home (a white bread mix).
On the Thursday night I made my leaven from 200g of flour, 200g water and 35 grams of my starter that had been fed that morning. I covered it with a damp tea towel and a plate and put it in the oven (which I’d warmed up to the lowest temperature and then turned off) overnight.
At the same time I mixed the bread mix (1kg) with 750g of water and left it on the shelf covered with a damp tea towel and a plate.
The next morning (Friday) I combined half the leaven with the flour mix and put the bowl in a sink of warm water with a damp tea towel over it. After leaving it for 20 minutes I mixed in a little more flour mixed with water and seeds (sunflower, pumpkin and linseed). From that point I left it in the sink for around 4 hours turning the mixture every 30 – 45 minutes and topping up or changing the water if it got cold.
The dough after mixing the flour, leaven and seeds together.
After that rising period (it didn’t actually rise very much for me) I tipped it onto a silicon mat on the shelf with lots of extra flour and, after a quick fold to try and get it to stay in a reasonable sized blob in the middle of the mat, left it for around 20 minutes under a damp tea towel. I then used some more flour to shape my loaves. I made one round loaf which went into a towel and flour lined bowl to proof over night and a sandwich loaf which I proofed in the oiled baking pan. Once shaped, the loaves were covered with a damp tea towel and put in the fridge until the next morning (Saturday).
Bread having an overnight proof in the fridge (sandwich loaf on top shelf, round loaf on the bottom shelf)
The loaves were in the fridge for around 18 hours. I took them out when I put the oven on to preheat to 200C. I have since worked out I didn’t set my temperatures high enough so I’ll be trying hotter next time (250-300C).
Once the oven was preheated I tipped the round loaf into a large corningware dish (I don’t own a dutch oven which is what is recommended) and put both loaves in the oven. I have since worked out I should’ve preheated the corningware dish in the oven.
Ready to go in the oven…
I baked the for 30 minutes before turning down the heat (to 180C), turning on the fan, taking off the lid and baking for another 30 minutes. Again I’d keep the heat higher next time.
The finished product was actually slightly undercooked (thus the recommendations above about hotter temperatures, etc) and the round loaf didn’t really rise but they both tasted delicious. The round loaf was gone by the end of Sunday after lunch with Rach Saturday, and we’re half way through the sandwich loaf (the other half was frozen).
The finished products (should’ve cooked hotter to get a darker crust, more rise in the round loaf, and cooked right through)The obligatory crumb shot of my round loaf. The sandwich loaf rose a lot higher but only had little bubbles throughout it (none of the big bubbles like this).
Over the last week I’ve had sourdough pancakes twice (once during the week and once on Sunday) and had a large serve of the bread on Saturday, and smaller serves Sunday and Monday. So far, I have not had any adverse reactions. I’m hoping this means that I’m ok with the bread as it tasted delicious but I’m still taking it slowly to see how I go and will not just gorge on it.
Share Your World Week 16
If you had to have your vision corrected would you rather: glasses or contacts? Or what do you use if you need to have your vision corrected?
I wear glasses. My issue is more that the muscles are tired and sore so my glasses do some of the work of pulling my eyes into line so I don’t see double. I feel that I’d most likely react to contacts as I react to almost every other thing I put too close or in my body.
If you had to describe your day as a traffic sign, what would it be?
Yellow! I’ve been able to do more than normal this last week and haven’t had any major crash days (red light days) but it’s been over 3 years since I last had a green light day.
Was school easy or difficult for you? How so?
School was OK. Academically I did well and didn’t struggle too much but I struggled a lot with the social aspects and with feelings of not fitting in.
Would you rather take a 1 or 2 week vaction with an organized tour or take a cruise of your choice?
It depends on where we are going… In general we like to do holidays where we plan things out for ourselves. This allows me to pace things and rest when I need to. Organised tours are usually quite busy and full days of activity but they are useful if you’re going to places where it might not be safe to do things by yourself. I know that when we were considering an African Safari (before I got sick) we were looking at doing an organised tour for safety.
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 that I’ve had the energy to do 2 workshops in a row! On Sunday I ran a fun workshop with children to make wearable art out of recycled materials as part of a ShareFest (like a swap meet) at the local Council.
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I then ran a productive workshop with Elected Members of another Council Monday night to progress the development of their Environment Management Plan. Apart from having a major struggle getting up Monday morning and having to take the first half of the day slowly I didn’t have too much of an increase in symptoms from these two events.
In this next week I’m just looking forward to seeing what happens. I don’t have too much booked in for the week so I’m going to take each day as it comes and see where I go.
Liveken - my chronic life journey 