Separating me from M.E. (and other chronic illnesses)

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?

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 20

Another week over already! This week was busy so my posts are closer together. Yesterday I shared my week with you, today I share my world…

When do you feel most connected with others?

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?

1. Meeting E in 2003 and marrying him in 2011!
2. Getting ill in 2013.
3. 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.
4. Starting this blog
5. Raising the money to publish the Foggy Frog and the Pain Gang Picture Book.

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 time spent with family.

This week I’m looking forward to celebrating E’s birthday with him.

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.

Share Your World – Week 11

No chatting today, instead straight into the Share Your World questions…

How many siblings do you have? What’s your birth order? 

I have two siblings, a brother and a sister. I’m the oldest, my sister is four years younger than me and my brother is two years younger than her.

The three of us back in the 90’s

We did at one stage have an extended step family which added an older sister, three older brothers and a younger foster sister, but they haven’t been a part of our lives for many, many years.

In a car would you rather drive or be a passenger?

I prefer to be the passenger for longer drives. I find driving uses quite a bit of energy so whenever possible I like to avoid it. When I’m the passenger I have the option of resting or watching the scenery go buy.

When you lose electricity in a storm, do you light the candles or turn on the flashlight? How many of each do you own?

I prefer to light candles but it depends on what we’re trying to do. Once the power went off when we were in the middle of a board game. We sat near an open window and both put on our head torches so we could see what was going on.

In terms of how many of each we own I’m not entirely sure…

We have over 100 tealight candles (I bought a pack many years ago) and probably around 6-10 tall stick candles.

We have 3 head torches and at least a few handheld torches but they’re hiding somewhere in the house or shed and I don’t remember the last time we used one apart from the lantern style one we occasionally use camping.

List at least five of your favorite types of animals?  (any animal to domestic to wild to marine life)

I’m definitely a nature/animal person and it’s hard for me to choose specific animals but this one says ‘types’ of animals so…

1. Fluffy, cuddly animals like kitty cats, puppy dogs, and guinea pigs
2. Hopping, jumping, energetic animals like frogs, kangaroos, and bunnies
3. Intelligent animals like chimpanzees, orangutang and dolphins
4. Feathery, talkative animals with beautiful songs like parrots, honeyeaters, and all forms of birds
5. Bright and colourful animals like butterflies, coral reefs, and birds of paradise.

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 feedback from the Pain Clinic on how I’m progressing and on our journey towards starting a family and for the support and encouragement I’ve recieved from my friends, both online and in person, since my post last week on Family Planning with Chronic Illness. I’m also grateful for being able to spend some time with my brother yesterday. It was great to get out to the zoo together.

This week I’m looking forward to my appointment with my Pelvic Pain specialist, the 4-hour rogaine on Saturday and progressing my work projects… We’re so close to completing the Foggy Frog Book and the Biodiversity Trails project!

 

Family Planning with Chronic Illness

A Quick No Buy Challenge Update: Although I was tempted by some of the clearance sales in town (hello fluffy warm down jacket) I did not make any purchases this week that weren’t experience related and shared with those that are important to me. I had lunch with my sister while she was in town (over from Hong Kong for a wedding) and E and I spent a wonderful morning out at the zoo for a behind the scenes tour and breakfast on Sunday.

And now for the post… (Apologies this is quite a long one for me!)

Those of you who know me in real life, and those who have been following my blog for quite a while, know that the ONE thing I really REALLY want from my life is to be a mum.

Unfortunately, around the time E and I were finally having serious discussions about potentially starting a family in the next year or two I had my first major crash.

Almost 3 years later and we’re just beginning to start having serious discussions again, but this time my health is the major road block.

Starting these conversations have been difficult this time around. E has not really wanted to talk about it because he feels like he has to be the bad guy saying No when he knows it’s something that I really want. He has wanted to wait until I was physically capable before we had the hard conversations but I think I’ve now made him realise that not talking about it has been hurting me more than having honest conversations.

Being a scientist at heart he really needs us to have logical and rational conversations about how this will all work and he struggles when I get overly emotional during the conversations.

So… where have we got to?

We have agreed that I need to set some goals to get to a point where I feel confident that I can physically cope with the pregnancy and the uncertainties that come with raising a child.

The goals I have set myself are as follows:

I believe that I would be physically capable of handling the stresses and uncertainties of pregnancy and raising a child if I can achieve the following and maintain it for at least 2-3 months with no major crashes/flare ups:

1. An average step count of around 7,000
2. The following average breakdown of activities
   • Less than 30% Rest/Mindless Activity – on average around 25% (meditation, naps, audiobooks, tv, Facebook, and travel when E is driving)
   • 10-25% Mental Activity (work, blogging, reading articles, etc)
   • around 50% Physical/Social Activity (exercise, housework, outings, etc)

To determine how I’m tracking for these goals I track my daily activity using a time tracking app on my phone and my steps using Garmin Connect and my watch.

As an example of where I am at the moment, my breakdown for February was:

• Average steps 5,404
• 39% Rest/Mindless
• 15% Mental
• 24% Physical
• 20% Social

I also break each category (mental, physical, and social into high and low activity). Overall my February breakdown for this was:

• 39% Rest/Mindless (as above)
• 26% high activity (exercise of any kind, work, budget review, large groups of people or stressful situations, cooking complex meals, baking, gardening, etc)
• 32% low activity (reading, writing in my journal, one on one or small group activities, showering and dressing, reheating leftovers/simple meals, etc)

*Note percentages may not add up to 100%. I am using the percentages provided by the app and I don’t believe it rounds decimals correctly to whole numbers.

As you can see, I’ve improved a fair bit since my crash in November (my average step count was down to 2,000-3,000)

The next step is to have discussions around the difficult questions like:

• What will happen if I’m having a crash?
• How will I cope with the day to day activities of looking after a newborn/toddler/older child?
• What kind of support do I need for this to be possible?
• Not only CAN I have a child but SHOULD I? Is it fair to the child?

What I’d like to do is get your input. If you have had children of your own while dealing with chronic illness like Fibromyalgia or ME/CFS, how did you cope?

Even if you don’t have a chronic illness, do you have any tips for minimising the impact of flares?

Here are my thoughts so far:

What will happen if I’m having a crash?

Flares and crashes are part of the parcel with many chronic illnesses so it’s important to have some sort of system in place for dealing with them. The first 5 years will be the most difficult to cope with as the child will be too young to actually understand what’s wrong when mummy needs to go lie down and isn’t able to do all the things they want to do.

Depending on the severity and duration of a crash/flare up there are several things that I can do to make sure I’m not neglecting my child during this time…

1. Be realistic about what is really essential to be a ‘good parent’. A young child doesn’t necessary understand what is going on but they are aware of if their parents are there for them or not. Realistically, the occasional day of ‘low energy activities’ is not going to be detrimental to my child’s health and mental well being as long as I’m with it enough to be there with them.
2. Have stand by ‘Low Energy Activities’ available. This could mean a day in bed reading stories, watching tv/movies, or listening to music. It could mean allowing my child to have free play time while I observe from the couch.
3. Have family support available on call if needed. At this point in time we are very lucky to have a large network of family support with reasonably flexible schedules. E’s Amma and Uppa, his parents, and my Gran are retired, my mum works part time, and my dad has a fairly flexible schedule. Obviously, they still have things that they do regularly and tend to fill up their schedules with other activities but between them all I’m fairly confident I could find someone at short notice who could help me out.
4. Do my best to minimise the chances of a crash/flare up occurring. Obviously prevention is better than treatment, so having systems in place to minimise the likelihood of a flare is important. The ideas I’ve come up with (or found while researching this topic) are:
   • With a new born, rest when ever the baby sleeps. During the first 4-8 weeks focus only on what is necessary – feeding, cleaning and resting with the baby. If possible, have support come in to do other tasks like cleaning, cooking, etc. (We already have a cleaner coming in once a fortnight, and – because I’m keen to use cloth for health and environmental reasons – I’d consider a nappy service for at least the first while).
   • As the child grows, continue to pace your activities. Consider having regular days/times where the child is in someone else’s care (family, child care) so that you can still have regular rest breaks.
   • Consider using a combination of breast and bottle feeding so that others can assist. This would be particularly useful for night feeds so that I can still get reasonable sleep. The impact of sleep deprivation on my health is one of our primary concerns at the moment.

How will I cope with the day to day activities of raising a…

Newborn?

From what I’ve read, the newborn stage (apart from the sleep deprivation) is relatively simple to cope with. As your baby is not yet mobile it is easy to do low energy activities with them. Most of your time would be spent just feeding, cleaning (nappy changes, etc) and cuddling your new little bundle.

As stated above, I’d consider having support services in place for cleaning, etc.

The verdict on breastfeeding vs bottle feeding for those with chronic illness is still out. Breastfeeding is simpler in that you don’t need to worry about sterilising bottles, making sure the formula is at the correct temperature, or just using up your energy in making up the formula. However, it uses much more energy to breastfeed and can leave you physically more tired (something that a person with chronic fatigue doesn’t really need) and you can’t share the task of feeding the baby.

Personally I’d still like to breastfeed, at least for the first few weeks if possible, but would be open to pumping and supplementing with formula so that E and others could help with feeds after the first few weeks.

To make breastfeeding (especially at night) as easy as possible in the beginning I would like my child to sleep next to me. However, due to my pain levels I tend to toss and turn at night and E is a very heavy sleeper so I wouldn’t want my child in the bed with us. I’d look at getting something like the arm’s reach co-sleeper which converts from a co-sleeper bassinet to a free-standing bassinet to a ‘read to me’ love seat. I’m interested in getting items that will have longevity in terms of usefulness and style.

As I mentioned above, my passion for sustainability and my own experience with disposable items near my nether regions (I’m allergic to disposable pads, etc) mean I’m keen to use cloth nappies on my child. I have done a lot of research on this topic and feel that it is doable even with limited energy and physical capabilities. With a young child you will already be increasing your washing requirements to keep their clothes clean, it doesn’t add that much to throw in a load of nappies every 2 days or so. It’s even easier if you use a nappy service that collects the dirty nappies once a week and washes and returns them.

Crawler/Toddler?

This in when I think things will start to get interesting. At this point in time I believe I’d be considering putting my child into some form of care (family members or child care) 1-2 days/half days a week so that I had some ability of pacing and having some more intensive rest.

I’d also consider going to spend days at other people’s houses (or have people over to visit) so that I have some support during the day.

Older Child?

As my child gets older I’d explain to them in age appropriate ways how my illness impacts our life and why I need rest periods.

Well, I’m starting to run out of steam and I have gone on for quite a while so I’ll leave it here for now (stay tuned for more as I continue to consider our options)…

Read More…

There are plenty of articles out there on this topic but here are just a few

Parents and Chronic Illness

10 Tips for Parents living with Chronic Disease

Caring for Your Child During a Chronic Illness Flare Up

Do you have any tips or advice you could share that would help us through this decision process?

Are there any other questions we should be asking ourselves?

 

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.