Only the one post this week as I’ve been unwell all week. Catching a cold on top of chronic illness makes everything so much more difficult and today is the first day I’ve felt well enough to do much at all.
Yesterday there were protests around the world to raise awareness of Myalgic Encephalomyelitis and the need for more research funding. I wasn’t able to go to a protest (nearest one was interstate) so I posted links to my social media accounts to promote it.
The millions missing campaign used empty shoes to represent how many of us are missing from every day activities.
What is your favorite go to beverage? Water, coffee, tea, coke, soda (non-alcoholic)
Water is my normal go to beverage. Occasionally I have bubbly water from the soda stream or a tea, but most times I just have water straight from the puratap.
Can you change a car tire?
To be honest, I don’t know. I’ve never been in a situation where I’d need to and I’ve never tried. I know the theory of how to do it though.
Are you a listener or talker?
E would say I talk a lot, but usually only with him. In general, I’m a listener.
Would you rather have no internet or no cell phone?
No cell phone. I could live without my phone as I’m home most the time so I can use the home phone but the internet is a large part of how I connect with the outside world.
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 being well enough to go along to the rogaine with E on the weekend. I’m also glad E liked his birthday present (even if he guessed what it was the day before his birthday)!
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In this next week I’m looking forward to feeling better! I feel a little better today and I hope that continues as the week progresses.
I feel most connected with others when I’m able to talk meaningfully with them about anything or when I’m able to share experiences with them. For example, chatting with my friends about topics that are important to both of us, chatting online (comments here and on Facebook) with others about life with chronic illness, and going away with E to ‘get back to nature’ and relax together.
What daily habit would you like to introduce to your life?
I’d like to get back to daily meditation and daily exercise but for now I’m just focused on adding more gratitude and general mindfulness to my day.
What one mini-little-adventure would you like to have in the coming week?
In the coming week I would like to surprise E for his birthday.
List at least of things or events that changed your Life: It could be as simple as a book or meeting a certain person?
Meeting E in 2003 and marrying him in 2011!
Getting ill in 2013.
Participating in a 6 month Green Corp project and volunteering with Conservation Volunteers Australia, giving me hands on experience with conservation and land management and energy auditing.
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.
You win a pet monkey but this isn’t just any old monkey. It can do one trick for you whenever you want from getting a pop out of the fridge to washing your hair. What would be the trick? Keep the house clean! Mainly tasks like dusting that I don’t have the energy to do myself. But I wouldn’t want to take advantage of the monkey so it would have lots of free time as well.
What caring thing are you going to do for yourself today? Bake fresh bread and refill my scripts. I love the fact I’ve been able to add some gluten back into my diet but I don’t want all the additives in store bought breads so weekly homemade sourdough is the way to go. I need to refill my scripts as I’m low on several of my supplements and medications, these are what help keep my pain levels at a manageable level so definitely a must do!
What color do you feel most comfortable wearing? Blues, greens and pinks at the moment, but really I just like colour!
Complete this sentence: When I travel I love to…. Connect with Nature! As you can probably tell from my last post and the photos I shared, whenever I can I aim to get out and be in the natural environment where ever I am.
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, E and I got away for the weekend and had a wonderful meal out with my sister who’s over from Hong Kong.
This week I’m looking forward to spending more time with my sister. 🙂
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.
Because we’re going away for the weekend (we’ll have left by the time you’re reading this) I’m keeping this post short and snappy today…
Share Your World – Week 18
Who was your best friend in elementary school?
We don’t have ‘elementary’ school here in Australia, but I believe it’s the same as Primary school here. I moved school a lot, which meant having to make new friends, so I can’t identify one best friend. There are a few I remember from each school though, and I’m still in touch with one so I guess I’d say she was my best friend. Her name was Anna and I met her in year 6. We’ve been friends since then. We both went to the same high school as well. We lost track of each other after school, but I now see her occasionally as she works near me.
What things could people do for you on a really bad day that would really help you?
Make dinner and keep me company on the couch, that’s the best things I can think of. Having someone acknowledge how I’m feeling and doing small things like this that make my life easier for the day.
If you could make a 15 second speech to the entire world, what would you say?
Live Sustainably, live by your values.
Would you rather be an amazing dancer or an amazing singer?
Singer.
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 secondhand items from friends and that I’m able to work enough to actually have some income coming in.
In the next week I’m looking forward to my time away with Erik.
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.
Liveken - my chronic life journey 