Remembering to say NO…

Hello, yes I’m still here and still alive.

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?

Share Your World Week 10 and a Napping Day

Hi All,

Before I get into Share Your World for this week I wanted to share an interesting day that’s coming up soon. Now, there seems to be some confusion about which day it actually is but sometime in the next week it’s National Napping Day. I’m unclear about whether this is an American day or some other country but I’ve seen it advertised as being either tomorrow (11 March) or Monday (14 March). (Update: National Napping Day is 14 March)

I recently found out from Casper, mattress makers from the US, about National Napping day and they had this interesting infographic to share:

I don’t normally share things from specific companies but I thought this was a simple description about the benefits of napping, something a lot of us with chronic illness do. The fact that Casper contacted me had no direct influence on my desire to share information about this day and I’m not endorsing the company’s products (in fact I’ve never seen them), I’m just utilising the effort they’ve already used creating this infographic. This is not a sponsored post in any way.

Now on with the post…

Share Your World – Week 10

What would you ask for if a genie granted you three wishes?

First of all, I’d wish to be free from the chronic pain and fatigue that I live with. Without that I’d be able to do most of the things I currently want to do but can’t.

Secondly I’d wish for my family and friends to be in a position that they feel comfortable spending time on things most important to them. This would mean more time for meaningful catch ups for all of us.

Finally, I’d wish the Genie free (as long as (s)he seemed to be a good Genie like in Aladdin).

What experiences are most meaningful to you?

At this point in time the mosts meaningful experiences to me are the small ones when I get to do something meaningful with someone I love. Meeting the newest addition to our family (our closest friends just had their second child who we got to meet last night at just 3 days old) was amazing. Watching the thunder and lightning from under our new pergola with E during the week. Having a deep and meaningful conversation with E, or my mum, or one of my closest friends.

As a kid, what did you want to be when you grew up?

I’ve always wanted to be a mum!

Apart from that I went through phases of wanting to be a music star (performing in musicals), a vet, and a zoo keeper.

Complete this sentence:  The best day of my life was…. 

This is a hard one, as there are quite a few to choose from and obviously my life isn’t over so there is likely to be many more amazing days to come…

I’d have to say that one of the best days of my life so far was the day I married E.

This slideshow requires JavaScript.

It was such an amazing and relaxed day filled with the love and support of our family and friends. I spent time planning and creating each aspect of the day so that it aligned with our values. A beautiful ceremony in E’s Amma and Uppa’s backyard with flowers from friend’s properties followed by a picnic lunch in a local park with baskets and blankets and glasses used on the day as favours for the guests. All the decorations I made myself and the cakes were made by me, Amma and one of my friends. Tea and coffee was served in Royal Vale sets owned by Amma and E’s mum.

Even over 4 years later, people who attended are still commenting on how much they enjoyed the day!

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 improving health that has allowed me to participate in several social outings and run a workshop for one of my projects. I’m grateful for E allowing me to broach the topic of family planning again and being honest about his feelings, helping me understand why we’ve been struggling to talk about this up until now.

This week I’m looking forward to celebrating my mother-in-laws birthday and continuing to work towards my goals of improved health.

Share Your World – Week 8

This week is going to be a one post week. Tuesday ended up being a full day with appointments and work, and the last few weeks have finally caught up with me and I’m going through a bit of a crash, so I didn’t manage to write my usual post then.

A quick update on the No Buy Challenge…. I’m still going well. I have been doing some online browsing but the only things I’ve bought outside of groceries was a set of Dr Seuss books through our local newspaper and a copy of Peepo secondhand from the markets.

And now for my answers to…

What household chore do you absolutely hate doing?

I don’t think I can say I absolutely hate any of the chores I do around the house. There are some I’m not able to do but even those I don’t think I’d claim to hate. I actually enjoy doing the washing, putting on Mr Vacuum, making the bed and looking after the animals. Others I don’t so much ‘enjoy’ but I don’t hate, like loading/unloading the dishwasher and cleaning the toilet.

What was the last URL that you bookmarked?

The last URL I bookmarked was my local library website (and that was quite a while ago). I don’t actually use bookmarks that often.

Close your eyes. Listen to your body. What part of your body is seeking attention? What is it telling you?

My body is telling me that it needs more attention and I need to slow down more. The tightness and general aches and pains are telling me I’ve done too much over the last few weeks and I need to remember to continue pacing.

Would you rather have a two-bedroom apartment in a big city of your choosing or a mansion in the country side in the state or country where you currently live?

I’d rather live in the country side than in a big city but I’d also prefer a smaller house, not necessarily an apartment but a house that is just the right size to fill our needs and that doesn’t have room to accumulate lots of clutter and dust gathering items.

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 opportunity to slow right down again and focus on my health. Although I still have a lot of work to do, I’m grateful that I feel ok with slowing down when I need to and I don’t feel like I have to push myself too hard to get things done.

In the week coming up I’m looking forward to reading more Dr Seuss books.

Share Your World – Week 7

Jumping straight in today so here we go…

What are you a “natural” at doing? 

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).

Share Your World – Week 6

Wow, a long list of questions this week from Cee for Share Your World… Let’s see how I go 🙂

1. What is your favorite word? I struggled with this one, but finally settled with ‘Dream’. It’s important to have dreams and to work towards them.
2. What is your least favorite word? Again, a struggle… Let’s go with ‘Busy’… It’s a word I’m working to remove from my vocabulary at the moment with the help of Courtney Carver’s Busy Boycott Challenge.
3. What turns you on creatively, spiritually or emotionally? Creatively – discussions and helping others, spiritually and emotionally – meditation, yoga, writing, and remembering my values.
4. What turns you off? Negative tension – I’m fairly sensitive to how others are feeling and I often struggle when people are being silent to deal with them.
5. What is your favorite curse word? Sugar… Or at least, that’s the one I use the most… I don’t really swear much.
6. What sound or noise do you love? A cat purring, a baby (almost all their noises – no, crying doesn’t seem to turn me off)
7. What sound or noise do you hate? Hate is a harsh word, but I definitely struggle with the sounds of chalk on blackboards, fingers moving over foam, and many other similar noises. They hurt my teeth and give me a headache.
8. What profession other than your own would you like to attempt? I’m quite happy at the moment, but I have considered midwifery in the past…
9. What profession would you not like to do? I no longer would want to do a profession that required working full time (or more than full time) as I feel that would impact on my health too much.
10. If Heaven exists, what would you like to hear God say when you arrive at the Pearly Gates? Welcome.

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 all my friends and family. I know this is similar to previous weeks but I really am grateful that they make the effort to spend time with me. I also learnt over the weekend that, even when I haven’t seem them in quite a while, they have kept me in their thoughts as much as I have kept them in mine.

I’m looking forward to spending more time with friends tomorrow, and finishing to set up our spare room as a day room for me (progress photos below).

Your turn! Let’s see if you can answer at least one of the questions above in the comment section.

10 great things and a half way update…

I had a wonderfully full weekend and got to catch up with several friends I hadn’t seen in a while.

It was fairly hot here over the weekend which (although impacting on energy levels) made for great weather for a trip to the beach and time spent outside.

Mid-way No Buy Challenge Update – Week 10

On Saturday E and I had a wonderful afternoon tea with Rach and her husband as a mid-way catch up for our 20 week No Buy Challenge (Yes, we’re already 10 weeks in!). We took the time to reflect on how the first half of the challenge had gone, my small discretions and temptations early on and Rach’s temptation that she managed to avoid in week 6.

We also considered the future, discussing whether this is something that would be ongoing for us or if we’d repeat the challenge in the future. For me the challenge has been relatively easy (I really don’t do that much shopping) where as it’s much more of a change for Rach. I’d probably continue (but more as a being mindful and intentional about things I buy then saying NO to all buying) and Rach straight out said no to continuing but would consider doing it again when they’re back from their trip (the reason she’s doing it this time).

10 Great Things about Me

Last week, while reading other blogs (something I try to do daily now) I came across a wonderful post on Chronic Rants that discussed how those of us with chronic illnesses can tend to focus on the negative impacts of our illnesses on our lives which impacts on our self esteem. She recommended that we should make a list of 10 great things about ourselves to counter the lowering of our self esteem…

Here’s mine:

1. I’m optimistic. I always (or almost always) see the positive side of things and don’t let the negatives overwhelm me too much.
2. I always have time for friends and family. Even if it’s just to listen to them and support them that way. This weekend was full of time for my friends. Afternoon tea with Rach on Saturday, lunch with another friend Sunday down the beach, and helping other friends with getting their house ready for rewiring in the evening (I sat and chat with V who’s expecting their second child in just over 4 weeks while E helped her husband with sealing everything they didn’t want dust to get into).
3. I adapt well. Life has thrown me quite a few curve balls (chronic illness being a major one) and I’ve able to adapt my lifestyle so that it hasn’t impacted too badly on my mental health.
4. I’m passionate.
5. I live by my values. Over the years I’ve learnt to identify what’s important to me and (partially thanks to being able to slow my life due to my chronic illnesses) I do my best to prioritise these values, my family and friends, living sustainably and looking after my health being the most prominent of these.
6. I love to learn.
7. I love to help others.
8. My friends and family love and support me in everything I do.
9. I’m (mainly) a positive person.
10. I’m unique!

I challenge you to make your own list of 10 Great Things about You. It does wonders for your self esteem.

Share Your World – Week 5

The questions this week have been very thought provoking and I’ve struggled with a few of them but here we go…

If you had a shelf for your three most special possessions (not including photos, electronic devices and things stored on them, people or animals), what would you put on it?

I don’t really focus much on ‘stuff’ and ‘possessions’ any more so I’ve struggled to think of 3 things that would go on the shelf.

I would definitely include my childhood teddy. He’s been through everything with me and he’s not going anywhere…

The second thing I’d put on it is the old cigar box that currently holds my yearly letters to E. Starting from our wedding day I’ve written a letter to him each year as part of his anniversary gift.

The third thing I’d add would be my special jewellery… My engagement ring (was my great grandmothers) and wedding ring, my heart necklace (6-month dating anniversary gift from E) and my crystal necklace (also a family heirloom).

If you had a box labelled ‘happiness’, what would you put in it?

NOTHING, or a note that just says ‘Be Present’. I would use it as a reminder that happiness comes from within, not from external sources.

What do you want more of in your life?

I’m very happy (or as happy as I can be) with my life at the moment but I’d be happy if I was able to have more family time and less pain/health issues.

Daily Life List: What do you do on an average day? Make a list of your usual activities you do each day.

An average day… I was planning to do a day in my life style post like my friend Joy and Toni Bernhard anyway so I guess I’ll describe it here.

Wake Up time… Generally between 8 and 9 am (although the last few days I’ve woken earlier then fallen back to sleep). At this time I take a moment to scan my body and see what parts are hurting the most and the least (there’s never no pain so it’s more an assessment of how well the day is going to start).

While still lying in bed I do at least a 5 minute meditation before stretching and slowly sitting up. Most days I’ll take a shower (sitting on the floor to avoid falling over or making pains worse) and get dressed.

Breakfast is the next task to address. I make a cup of tea and see how much energy I have. Most days I just have a piece of fruit or something premade that’s easy to eat. When I have the energy I’ll make a cooked breakfast with veggies and eggs.

While the kettles boiling (and breakfast is cooking) I’ll do a short sun salutation. Just 5 minutes is enough to stretch out my muscles but it also wears me out again.

After eating breakfast it’s time for another rest so I’ll sit on the couch drinking my tea. I may browse Facebook on my phone.

After 10-15 minutes rest, I’ll read through some blogs for up to 30 minutes (usually closer to 15 minutes) then push the button that sends the robot vacuum on a round of the kitchen/family room and laundry.

I’ll clean the litter trays and then assess how I’m feeling.

If it’s a good day I’ll do an hour or two of work (writing blogs, working on consulting jobs) or spend some time cleaning up around the house with regular short rest breaks in between. If it’s a bad day I’ll put the tv on or listen to an audio book.

At around 11:30 I’ll start thinking about lunch. Generally this will either be left overs or a sweet potato which I throw in the oven with salt, pepper and oil and leave to bake for an hour.

After lunch I have a nap before either doing a bit more work/housework or putting the tv/audiobook back on.

Around 5 I start considering dinner. I slowly make dinner taking lots of rests and by the time E is home (generally between 6 and 7pm) dinner is ready to eat.

We eat and watch tv until around 9-9:30 when I take my medicines, floss and brush my teeth, shower and bed.

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’m able to live a slow life. Over the weekend E and I were able to slow down and just relax. I spent a whole morning listening to audiobooks while E was on the computer and doing things around the house, we visited family and we went for a slow walk in the local national park.

This week I’m looking forward to continue living slowly. Taking the time to enjoy the simple things like the warmth of the sun and the sound of the rain. I’m also looking forward to afternoon tea with Rach as a special mid-challenge catch up as part of our 20 week no-buy challenge.

Share Your World: Week 4

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).

Share your World: Week 3

 

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.

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.

Dangar Island, NSW, Australia.

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.

Share your World: Week 2

Balance… My word for 2016… is difficult to achieve.

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.

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).

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).