Tag Archives: chronic pain

A week in my life with Chronic Illness

18 May 16
Megan
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I meant to do this post last week for May 12 International Awareness Day but brain fog made me forget the date and I didn’t have the energy last week to write it anyway so here it is today… A week in my life

A little background for those of you who haven’t been following me for very long. For over 3 years now I’ve been living with chronic pain and fatigue as my daily companion. I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Pelvic Congestion Syndrome.

I’ve already done a day in my life post, since then I have improved to the point that I try not to nap during the day any more.

What I do in a week

The following is what I did in the week starting Monday 9 May… It gives a good idea of what I do most weeks. The types of appointments and work I do varies week to week and the number of crash days also varies.

Monday

I wake up slowly at around 8:30 am noticing the heavy and aching feeling that’s always there. After stretching in bed and slowly getting up I measure the 0.5mL of testosterone cream and rub it into my leg and then slowly get dressed.

After getting dressed, I sit back on the bed and spend some time checking my emails and my to-do-list, and waiting for the heaviness and shakiness to settle enough to get up and make breakfast.

I’m feeling rather out of it today so I take my time doing my weekly budget review and spend some time online reading blogs. The fact that the weather is very wet and cold today doesn’t help my pain levels. I decide to hop in the bath and read until lunch time.

Being a Monday, it’s my day to do a bike ride. Before having lunch I decide to do a 10 minute easy ride on the stationary bike in the shed because it’s too wet to go out. I reheat leftovers and put the tv on while I eat lunch.

I’ve got some work I have to do today so I spend most the afternoon doing that. Again, tasks that would normally take half an hour to an hour to do are taking me over 3 hours.

Before long, it’s 5:00 pm and my brain is like mush, I put the TV back on and only get up to make a simple dinner and to do some stretches because my pelvic pain is flaring tonight.

At around 9:00 pm I get up, take my pills, have a shower and head to bed. In bed, I take some time to review my daily to-do-list and write a short list for tomorrow. Lights out by 10:00 pm.

Tuesday

I don’t wake up until 9:00 am today. Before even getting out of bed I decide to check my emails and my to-do-list because my body doesn’t want to cooperate.

Today I’m heading to my mum’s to help her with her assignment so after getting dressed and having breakfast I drive down there. Most of the day is spent helping mum. When we finish going through mum’s assignment in the afternoon, we go for a short walk and then I sit down and do my weekly blog posts before attending an online meeting for the conference I’m helping to organise.

By the time the meeting ends my sister has got home from her school placement and we head into town for dinner with E and a few friends from his office. Because E was drinking, I drive us home at the end of the night (that doesn’t happen very often).

It’s a late night out for me but I’m in bed by 10:30pm

Wednesday

Ok, so I did a bit too much Tuesday and that time of the month is starting so pain and fatigue are very high today.

It’s definitely a crash day which means I spend most the day in front of the tv not doing much. I do make myself do my 10 minute ride on the stationary bike because some movement helps with pain levels and I order a few things I need online (cat food and my calcium and magnesium supplements). I also prepare the dough for baking bread the next day.

I shower both in the morning and the night to help with pain. In bed by 9:00 pm.

Thursday

I’m awake at 9:00 am. Fatigue is slightly lower today and I do have a doctors appointment I need to go to. The day starts with a shower and breakfast. I also throw the bread in the oven to bake.

Before heading to my doctors appointment I throw on a load of washing. I drive to town and visit my doctor to get a script I forgot to ask for in my check up the week before. After that I buy lunch and eat with E in his office before I drive home and hang out the washing.

The rest of the day is spent resting in front of the tv, until I shower and head to bed again at around 10:00 pm.

Friday

Up at 8:30 am today and I do feel slightly better today. Dad’s over for lunch today so that takes up most my day.

I do manage to send an email out inviting people to a meeting next week for the conference organising stuff and to do a short ride on the stationary bike and a short walk with my sister who is over for dinner.

In bed by 10:15 pm.

Saturday

After getting up at 9:00 am I head down to mum’s and spend most the day out with my sister op-shopping. I know that I’m doing too much today but I’m enjoying a day out with T while I can.

some of the books I picked up on our op-shopping tour.

some of the books I picked up on our op-shopping tour.

In the evening, E makes dinner because I don’t have any energy left and I’m in bed by 9:30 pm.

Sunday

Up at 9:00 am today and throw on a load of washing straight after breakfast. I then sit down and rest for a while before baking a cake. The whole morning is broken down between baking, washing, and doing low energy activities like reading blogs.

I reheat left overs for lunch and then read some of the children’s books I bought yesterday until E’s family comes over for afternoon tea.

I also spend some time prepping for baking bread on Monday and putting together some lego.

I have a bath in the evening after dinner as I’m feeling very achey and end up in bed late at 11:00 pm mainly because I relax too long in the bath.

That was my week last week.

As you can see, my days vary a lot. This was a fairly busy week for me as there were a few days in there where I wasn’t able to have any rest breaks throughout the day at all. That isn’t typical but the rest of it is. I try to find a way to balance work, social, exercise and rest each week.

What does your week look like?


Family Planning with Chronic Illness

08 Mar 16
Megan
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A Quick No Buy Challenge Update then on to Family Planning: 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?

 

Share Your World – Week 5

04 Feb 16
Megan
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The questions this week have been very thought provoking and I’ve struggled with a few of them but here we go… Let’s Share Your World!

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…

2014-12-16 18.55.58

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.

A simple wardrobe with chronic illness

02 Feb 16
Megan
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Another week down in the No Buy Challenge and another week of sticking to the goals. I’ve decided that instead of focusing my posts on the challenge each week (I will if there’s anything to update you on) I’d start doing some of the other posts I’ve been planning with just a short update at the beginning for the challenge. So, as promised in earlier posts, today I’m focusing on my simple wardrobe.

Over the last few years I’ve become increasingly interested in reducing ‘clutter’ in our house. With limited energy, my ability to maintain the house to an ‘acceptable’ standard of cleanliness had dropped. All too often there were items lying over every conceivable surface in the house, washing piling up (dirty and clean) and dishes in the sink.

As part of my year of ‘Enough‘ last year, I spent a considerable amount of time removing a lot of the things and stuff that had built up but wasn’t actually needed, useful or loved. I have focused mainly on my own things, hoping to lead by example for E so my wardrobe was one area that got regular attention and I’m quite happy with the result.

There are many, many posts out there about how to create your own minimalist wardrobe, check out:

This is how I’ve modified the guidelines I read to suit my lifestyle and preferences.

An initial culling

When I first began my wardrobe clean out I pulled everything out of the cupboard and tried it all on with Janelle (my trusted friend) to assess what I liked and actually fit well and looked good. Anything that didn’t meet any of these criteria either got donated or thrown out depending on the state they were in.

Chose a colour scheme

I chose two main neutral colours – black and grey (I do still have a few white and brown items but mostly black and grey) – and two spectrums of accent colours blue/green and pink/purple. Anything that didn’t fit these colour schemes were donated, apart from my orange coat (A honeymoon purchase and my favourite winter coat).

Turned my coat hangers backwards

Last year I turned all my coat hangers around and only flipped them when I wore an item, anything not worn at the end of the year was donated. I found that all my short sleeved shirts are now gone, I tend to wear blouse style tops if I wear my suits, and I only have one long sleeved shirt.

Thanks to this process I now have room to hang everything, including jumpers, t-shirts and bottoms (were folded last year) so I’ve turned them all around again this year so I can assess how many of these items are actually worn throughout the year.

Pay attention to how I feel in each item

Throughout the year I donated several more dresses because they just weren’t comfortable, either they were too tight or they had zippers/buttons on them that were just not comfortable against my overly sensitive skin (a symptom of my Fibromyalgia).

Pay attention to what I wear most

A lot of the guides for minimalist wardrobes recommend X number of tops, X pants, X dresses, etc. This idea didn’t work for me.

I’ve found that because my tummy can (and does) bloat daily – going from almost flat to looking 5 months pregnant by the end of the day – I tend to wear dresses more often than any other item of clothing. I hardly ever wear skirts, jeans or pants any more – anything with a waist band that isn’t stretchy really.

As a result I only have one skirt, one pair of jeans (maternity jeans), two pairs of shorts (one stretch cotton), a pair of maternity leggings (worn almost daily in winter). In comparison, I have 9 dresses.

I also get really cold quickly so I have more items that I can layer such as cardigans, jackets, etc.

From 2 drawers + hanging to just hanging...

From 2 drawers + hanging to one row of hanging (shirts in foreground are E’s)

 

This wardrobe suits my life with chronic pain, limited energy, and daily fluctuations in body shape (bloating).

Maintain

To avoid a recurrence of wardrobe ‘clutter’ I’ve established some guidelines to maintain my wardrobe:

  • One in one out (for every new item that comes in an old item needs to leave the wardrobe)
  • Stick to colour scheme (any new items need to fit with my colour scheme)
  • Natural fibres (no wool) – my preference is for cotton or bamboo, I’m allergic to wool so none of that
  • Pockets! (Over half my dresses now have pockets and I’ve made a decision that any new dresses need to have them, this helps dramatically with reducing what comes in because there aren’t that many out there that do)

What items of clothing do you find yourself drawn to most days? Do you think you could live with a minimalist wardrobe?

Share Your World: Week 4

28 Jan 16
Megan
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I can’t believe it’s almost the end of January already and we’re up to week 4 of Share Your World 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.

Share Your World – Week 4

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

21 Jan 16
Megan
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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 Share Your World posts is taking me many times longer than normal.

Share Your World: Week 3

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…

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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.

2016-01-19 10.28.47

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.

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Which place do you recommend as a Must-See? Please state which country, state or providence.

Dangar Island, NSW, Australia.

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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.

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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.

Week 7 No Buy Challenge: Celebrations, side effects and PEM

19 Jan 16
Megan
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Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch... Water and tea, tablet and headphones, tv controller...

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

  • I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
  • High levels of pain down the inside of my limbs (especially my left leg).
  • Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?

Share your World: Week 2

13 Jan 16
Megan
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Balance… My word for 2016… is difficult to achieve. 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).

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.

Share Your World: Week 2

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).

Share your world: Week 1 2016

07 Jan 16
Megan
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Last year was not a successful year for me in terms of blogging. Not only did I not post much but the posts I was getting up weren’t that popular. So this year I’ve decided to get back to the sort of posting I was originally doing. Instead of just posting about things related to living a simple, sustainable and meaningful life with or without chronic illness I’m going to do a wide variety of posts that allow you to get a better insight into my life. I’ll talk about my work and social commitments, the ups and downs and the everyday. I’ll also participate in several challenges throughout the year. Right now that means participating in the 20 Week No Buy Challenge with Rach (this is week 6 now) and I’m going to participate in Cee’s Share Your World Challenge, a weekly posting challenge with the following format:

Each week Cee will ask you:

  • To answer three random questions each week.
  • Respond to a fourth item (I will randomly chose from this list)
    • Making a List out of a topic
    • Completing the sentence I start
    • Answering a Would you Rather question
  • Bonus Question is always the same  “What are you grateful for from last week, and what are you looking forward to in the week coming up?”  Because we all need to be reminded that there are many things in our lives to be grateful about.  

So here we go…

Share Your World – Week 1

As a child, who was your favorite relative?

This is a hard one for me to answer, growing up in a very large extended family with divorced parents (My parents each had multiple – 5 and 6 respectively – siblings and many of them had children which meant many cousins for me as well). I think in answering this question I’m going to have to expand it to “who were your favourite relatives?” as two stand out to me at the moment as being top of my list (the rest of you are still important parts of my lives and I love you lots but as a child these two seemed to be the most important in my life).

My mum

Yes, this may seem cliche but my mum has always been one of the most important people in my life and the one I knew would always be around to comfort me when I needed it.

She was the one that was there reading us bedtime stories, taking us on day-trip adventures where we’d hop on public transport and just travel for the day (this might mean the bus and a train trip or bus and tram).

She’s still the one I go to when I need advice. I can talk to her about anything.

My Aunty Rachel

Rachel is the youngest of my aunties. She’s only 9 years older than me and because of that I think I always felt she was more like one of us (my cousins and I) than one of the ‘older’ generation.

Growing up, she would have all of the cousins around to her place (when she had her own place with her boyfriend) and we’d share a meal or go to the beach. She was always participating in interesting activities like belly dancing and yoga and she always loved writing (she has her own blog now if you want to check it out).

I vividly remember when she moved away from Adelaide. I don’t remember how old I was but maybe early teens. We went with gran and some of the extended family to see her off at the bus station and I remember feeling like I was loosing someone very close to me. I’d say I was devastated, I couldn’t stop crying even after we’d said goodbye. I’m sure it was at least a good 10-15 minutes after she left that I finally managed to stop crying.

If you could be a tree or plant, what would you be?

I think I’d be like the weeping mulberry in our back yard.

Our weeping mulberry

In previous years it’s provided a place for birds to nest, it provides delicious fruit for both us and the birds, and provides shelter from the sun. In a sense it’s a nourisher and protector.

Delicious mulberries off our tree.

Delicious mulberries off our tree.

What would be your preference, awake before dawn or awake before noon?

I’ve grown up as a morning person so my preference would be awake before dawn. However, since being ill I no longer have the energy to be able to do that. My normal waking time is sometime between 8 and 9 am. Some days I may wake up earlier but if I get up earlier I would probably only make it until lunch time before needing to return to bed for the rest of the day.

Would you like to sleep in a human size nest in a tree or be snuggled in a burrowed spot underground?

For sleeping I’d prefer to be snuggled in a burrowed spot underground. It would be like a nice big hug, warm in winter and cool in summer insulated from the weather outside. During the day though, I’d love a human size nest to sit in and watch the world go by!

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’ve finally come out of my most recent major crash to a point where I can actually focus on work again. It’s been over a month since I last felt like I was actually being productive and useful when I attempted any work.

I’m grateful for the opportunity to spend time with my husband while he had leave over the Christmas/New Year break and for the support of those around me who act as mentors for me while I move forward on this quest of self employment and an overall simple, sustainable and meaningful life.

In the next week, I’m most looking forward to my appointment with my Pelvic Pain Specialist on Monday. It’s been 6 months since I’ve seen someone from their clinic and this time I get to see the main specialist there. I’m hoping to be able to get a bit more guidance on how to manage my symptoms given that all the medications recommended to me either don’t work or the one that did work for pain relief (it was amazing! Made me feel like I was floating on clouds. The only day in almost 3 years that I had almost 0 pain) set my asthma off.

I’m also hoping for clarification of what she thinks is the cause of the pain. Although I have been officially diagnosed with Pelvic Congestion Syndrome after a laparoscopy in 2013/14 (can’t remember exactly when) the other people I’ve seen at this clinic have suggested that it may still also be partly Adenomyosis or Endometriosis even though nothing was seen during the laparoscopy except varicose veins everywhere.

“You’re looking good”…

10 Dec 15
Megan
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I’ve lived with chronic illness to some extent my whole life but for the last 2 1/2 years illness has been a major contributing factor in my life.

One thing I’m noticing more and more as I learn to accept, and live with, my chronic illnesses and the disabling symptoms they impose on my daily life is the innocence and ignorance of many who do not suffer from them.

It’s not only what’s happening in my life, but what I hear from others online and in person who are also suffering from invisible chronic illnesses.

The key word there is INVISIBLE…

Whenever I meet people in public I’m asked “How are you going?” or told “You’re looking good” and when I hear these things I never know how to reply.

On the outside I look like any other healthy person.

I walk normally most of the time (no obvious limp) although this can be difficult when I’m in a lot of pain or when the fatigue is so bad that my legs feel like lead weights. I look bright and happy (because I am happy) even when inside my body is screaming at me and my brain is in a dense fog.

Yes, I may ‘look good’ but I don’t feel good but I don’t want to be a downer for everyone around me so I don’t necessarily want to tell people I feel like crap.

How should I respond to these comments and questions?

I’ve seen different responses online from others going through the same thing.

Some people keep all the pain and suffering inside. They tell others they’re fine and try to ignore what’s going on then get upset and angry at the people asking the questions because they don’t understand.

Others tell anyone and everyone what’s going on with them. This can lead to people getting frustrated at you. People can begin to think you’re not really as sick as you say you are.

Personally, I think something in between is the best road to take. When answering questions or talking to people about our health we should take into consideration who we’re talking to and what their relationship is with us.

Even those closest to us don’t need to be constantly told what we’re feeling. Yes, they need to understand but we also need to understand it can be hard for them to cope, especially if you fell ill after you were close.

Responding to “You look good”

If I don’t know the person at all, I’d just reply ‘Thank you’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘Thanks, I don’t feel that good’.

If I’m close to them I might share more detail about how I’m feeling, especially if how I’m feeling will impact on what we’re planning to do together.

Responding to “How are you?”

If I don’t know the person at all, I’d just reply ‘Fine’ or ‘OK’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘As well as can be expected’. If they’re interested I might go into more detail afterwards.

If I’m close to them, I’d give a similar answer to above but would usually give them more detail.

How do you respond to well meaning but difficult questions and comments?