Are you feeling better? You’re looking good!

The other day, E and I were out celebrating the birthday of one of our friends. It was a dinner and dessert event, which meant a late night for me.

Because I knew we were having a late night I’d spent most the day doing quiet activities like reading and building the Lego I got for my birthday. Even though these were the main activities I did that day by lunch time I was struggling to keep my eyes open and my pain levels were rising.

I spent most the afternoon on the couch resting and thankfully I was feeling reasonably well when it came time to head to dinner. Still low energy and slightly raised pain levels, but not bad enough that I couldn’t focus at all.

At dinner, the venue was quite loud and I did struggle with focusing on conversations so didn’t even bother trying to keep up with conversation at the far end of the table. I did chat a bit with those at my end of the table but mainly just tried to listen.

When we got to where we were having dessert it was quieter so I began to join in the discussion again. At this point someone asked me if I was doing better because I looked a lot better than I had before.

Now, I’m always hesitant to answer this question.

Yes, at the moment I’m managing to do a lot more than I had in the last 3 years. I’m working and I’m socialising more. My energy levels are (ever so slightly) better than they have been (more stable), meaning I’m crashing less often, and my pain levels are relatively stable (although they’re beginning to fluctuate a lot more now that winter is here again).

If I just compared how I’m doing right at this moment with how I was 6 months or 2 years ago my answer would be a resounding YES, I’m doing better.

But I’ve felt better before, for a month or two, and then had a major crash which took me back to worse than I was to start with so I don’t want to jump the gun and say I’m doing better yet.

I believe the Testosterone cream is helping with my energy levels at the moment, but I am concerned about the side effects if I stay on it long term and I really want to have children at some point.

E was frustrated with me that I wouldn’t give a clear Yes answer to our friends and that I deferred to him and asked if he thought I’ve been doing better.

I did this because, up until recently, he’s always been able to tell (even before me a lot of the time) if I’m doing too much and about to crash. It seems that I’ve been able to perfect my ‘well’ face (the one I use to cover the fact I’m struggling) to a point where even he’s not noticing as quickly when I’m struggling with things.

That night out, I looked like I was doing well. For some periods of time I was, my energy levels were fluctuating dramatically going from able to focus to complete zone out several times during the mean. Normally E would notice these zone out times, but it appears he didn’t that night…

Do you struggle with people assuming you’re better because you ‘look’ better than before?

How do you decide how much to share?

Share Your World Week 18

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…

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.

Speak to you all when we get back!

Share Your World Week 15 + a No Buy Update

I forgot to write about the No Buy Challenge in my last few posts and we’ve now got only one week left to go.

This past week I did ‘buy’ one thing that isn’t in my usual purchases, but I don’t see it as being something against the guidelines of this challenge as it was more of a charitable donation than a purchase…

On Saturday night E and I went to a progressive dinner at Monarto Zoological Park (our local Open Range Zoo). The dinner was great fun with each course being at a different location around the zoo and unique keeper talks at the Chimpanzees and Carnivore (Hyena and Lion) Platforms.

As part of the dinner there was a raffle draw and silent auction. We didn’t win the raffle but we did win a unique painting (painted by one of the chimpanzees) as part of the silent auction. The painting is framed and came with two photos showing the chimpanzees painting.

The painting and the photos that accompany it.

A close up of the two photos…

The dinner itself was good. Hors d’oeuvres were served at the Chimpanzee platform. Being early evening they were just getting ready to sleep so while we drank wine and nibbled on dips and veggies (there were chicken nibblets as well but I mainly had the dips) we got to watch the chimpanzees make their nests and listen to the keeper telling us about each of the chimps and telling us (in very upsetting detail) about what happened with the recent births (one chimp and her baby died for various reasons, they have one living baby that was born a few weeks after the one that died). We were then taken to the carnivore platform for soup and listened to the keeper who gave out turkey necks as treats to the Hyenas and Lionesses that were out in their enclosures.

After entree, we were taken to the camp site for the main course. A sit down roast dinner during which the silent auction and raffle were concluded and then to the function centre near the giraffe’s for dessert, a wide selection of cakes, sweets, and fruit.

All the food was prepared by volunteers and they did a wonderful job of ensuring there was enough food for everyone and those of us with dietary requirements were catered for well.

Share Your World – Week 15

Name one thing not many people know about you.

I can’t think of what to say here, I’m sure there’s something but I’m so open and share most things that I’m really struggling to think of something…

If a distant uncle dies and you were always his favorite and leaves you $50,000 (any currency) in his will, what would you do?

I’d make sure E and I went on a nice holiday and then the rest would go towards paying our mortgage down sooner. The sooner we have no mortgage the sooner I’ll feel more comfortable with our current lifestyle. At the moment I can’t work that much so we’re pretty much a one income family.

Where do you hide junk when people come over?

I no longer need to hide junk when people come over thanks to my decluttering. In the past stuff tended to go into the spare room or in the shed.

Complete this sentence:  I want to learn more about …

Homemaking. As much as I enjoy working when I have the energy, I’m finding I enjoy being at home and having the time to spend on tasks and activities around the house as well. Having such limited energy means that I have to prioritise and most of the time I now prioritise time with family or house related tasks over any other tasks.

I’m currently learning about fermentation and making sourdough bread and look forward to adding more homemade and sustainable activities into our lives.

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 time spent with family and friends. As well as the progressive dinner, we had a friend’s housewarming last week and many of my friends have helped me collect material for the workshop I have coming up this week.

This week I’m looking forward to running the ‘wearable art hats’ workshop for children at the Sharefest this weekend. It should be fun seeing what creations the children can come up with from the bottle caps, cardboard, ribbons, buttons and other recycled materials we’ve managed to collect this week.

Taking Stock and a No Buy Challenge Update

The No Buy Challenge is going reasonably well, there was one purchase this week which I’m unsure if it was breaking my own guidelines or not… It fits into being social but is something we could probably have held off on… New additions to one of our games (card based two player Lord of the Rings Game). It was a joint purchase by both E and me but E says it counts as my purchase because I made the final decision. Apart from that I’ve been going well.

I’ve also decided to start a regular (maybe monthly or quarterly) series inspired by Pip at meet me at mikes…

Taking Stock – March 2016

The concept is really simple, a snapshot of where you are, who you are spending time with, how you are feeling and much more. To create it just add a sentence or two next to each category below…

Making : Napkins and placemats. My most recent, simple sewing projects have included napkins and placemats. I’ve been making sets as housewarming gifts and birthday presents and I’m also making some to hopefully sell at a local market.

Cooking : Stuffed Chicken Breast… This simple meal has been a regular addition to our dinner rotation over the last few months. Chicken stuffed with mushroom, baby spinach and hummus served with mashed potato and steamed greens.
Drinking : Water. My regular go to drink.
Reading: Dr Seuss.
Wanting: A simple, sustainable and meaningful lifestyle. I’m definitely on the path towards it but life is starting to get complicated again so it’s time to step back again and reassess my priorities.
Looking: Watching nature as the seasons change.
Playing: Lord of the Rings the card game with E.
Deciding: To slow down and add more white space in my life.
Wishing: My health would improve enough to consider starting a family.
Enjoying: Sewing and creating.
Waiting: To meet the newest addition to our friendship group. Our friend’s second child is due 10 March, so any day now.
Liking: The wonderful weather at the moment. It is heating up again but still quite nice outside right now.
Wondering: When we should plan our next weekend getaway for.
Loving: Having enough energy to spend time with family and friends.
Pondering: How long to give new drugs to settle before making a decision about the balance of side effects vs benefits.
Considering: How lucky I am to have E in my life.
Buying: Nothing much, I’ve got 7 weeks left of my No Buy Challenge so purchases at the moment are mainly groceries, and purchases for E or social activities.
Watching: The West Wing. E and I have only recently started watching it and we’re thoroughly enjoying it.
Hoping: That I can maintain my current progress in regards to health. I’ve been slowly increasing my step count and adding in more social activities.
Marvelling: At the generosity of our friends, family and neighbours.
Cringing: At how self absorbed people can be.
Needing: A clearer head.
Questioning: My current workload.
Smelling: Freshly cut grass.
Wearing: Maternity Jeans and a loose fitting top (comfort clothes).
Following: Rach’s progress with the No Buy Challenge.
Noticing: The benefits of saying NO.
Knowing: That life is good at the moment.
Thinking: I need to move.
Admiring: The simplicity of a cats life.
Sorting: The spare room. It’s now set up to be my sewing room as well.

Getting: Tea? I’ve been slowly using up our tea bags so that I can move to loose tea (less waste)
Bookmarking: The Down To Earth blog. A reasonably local source of inspiration (Australian) for simple, sustainable and meaningful living.
Coveting: This white linen smock from Bohemian Traders.
Disliking: My current inability to focus clearly, an exacerbation of my usual brain fog thanks to drug side effects.
Opening: The worm farm to check on our worms (We inherited/adopted a worm farm from some friends moving interstate).
Giggling: At DeadPool, we saw it last night in the movies. Not my normal choice of movie, and quite a rude sense of humour, but I enjoyed it.
Feeling: Exhausted! I’ve been struggling to sleep on top of my normal symptoms lately.
Snacking: On dried apricots and almonds.
Helping: Out friends who are moving interstate. As well as adopting the worm farm from one set of friends, we’re looking after another friend’s fish while he sets himself up.
Hearing: The cats fighting for position in their comfy chair behind me.

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 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.

Just One of Many: Difficult decisions with Invisible Illness

This year’s theme for Invisible Illness Awareness Week is “Just One”.

My whole life I have suffered from invisible illnesses. From a very early age I suffered from asthma and allergies. Because I grew up with them I know how to manage them reasonably well (although I’m still identifying and learning to manage new allergies all the time). The newer conditions (Fibromyalgia, ME/CFS and Pelvic Congestion Syndrome) I’m still learning how to manage and live with.

I feel like since I have been living with these conditions my whole life has been turned upside down. Many things have been put on hold or given up. I haven’t worked in over a year, I struggle with social events and I only just manage to stay positive with the limited level of activity I’m capable of.

Lately, I’ve been struggling more than usual with staying positive. I honestly don’t mind that my ability to do many of the things I love has been limited. I don’t really mind too much that I haven’t been able to work for so long and that I haven’t been able to go on the holidays I dream of.

There is JUST ONE thing that I really struggle with and I think it is something many women in my position are likely to be struggling with as well.

Many of my family and friends are either pregnant or have young children in their families. Although I am extremely happy and excited for them, it also makes me sad. Before the new conditions hit, I had believed that by now I would be a mother, or at least we would be trying for children.

Now my life is filled with so much uncertainty. Although I’m told that my conditions do not affect my fertility, many of the drugs I’m on at the moment can OR can affect the development of a baby. I’m not sure my body can cope with pregnancy or with looking after a young child. My bone density is low which means I have a higher risk of stress fractures and very weak bones. My pain is going to increase during pregnancy due to the pelvic congestion and all my other conditions have a 33.33% chance of getting worse as well based on what information I’ve been able to find.

Despite all of these issues, having a family of my own is the number one most important thing to me. Ever since I was a child (possibly even as young as 4 when my sister was born) I have wanted to be a mum.

If I had to choose JUST ONE activity I would like to achieve in my life it would be to have a child of my own.

I have a difficult decision to make and I feel we need to make it soon. To try for a biological child of our own or to adopt. There are treatment options available for some of my issues which I have been told we can’t consider until we’ve finished trying for children.

Whichever choice we make, I know that any child we bring into our family will be loved and cared for. I may not have the energy or strength to be a ‘normal’ active parent, but I will be the best mother I can be. We have a wide network of family and friends who I know would do whatever they could to help us as well.

What is your JUST ONE story?

Are there others out there who are struggling with decisions related to starting a family with multiple chronic illnesses?

Post #200 – a reflection on My Chronic Life Journey to date

Thank you all!

I wanted to take the time today to say thank you to all of you; those of you who have been following from the start and those of you who have just started following me here.

This blog started as a place for me to share my progress with my illness (at the time undiagnosed) with my family and friends who were interested but I didn’t see much. It has grown into so much more!

With the support and input of many of you, we have begun the process of setting up a campaign to help raise awareness of chronic illnesses that don’t have visible symptoms. The Foggy Frog picture book, which many of you helped fund, is on it’s way to being published either later this year or early next year. Once it is published we’ll begin promoting and considering what the next phase of this campaign will be. One thing I do know is that the campaign will be being run through LiveKen, a business we’ve established for this campaign and to help people discover how to live simple, sustainable and meaningful lifestyles.

Together we have defined what it means to be mentally strong when living with a chronic illness.

You have been with me as I have been diagnosed, first with Pelvic Congestion Syndrome then Fibromyalgia and ME/CFS, and while I’ve been experimenting with different treatment options.

Looking back I can see that I have improved a little, and we have achieved a lot, in less than 12 months. For example, I am now able to do some basic housework and cooking and have been exercising daily. Both things I would not have been able to do when I first began this blog from my couch.

So, THANK YOU, to each and every one of you who have been a part of this journey and please continue following and sharing with me both here and over at LiveKen as we continue on our journey and discover how to live a life that is meaningful and fulfilling with multiple chronic illnesses.