Tag Archives: Chronic Fatigue Syndrome

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…

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.

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).

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…

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.

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…

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?

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).

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.

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.

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.

Last year I chose one word to guide me through the year… Enough.

I’ve recently found out from The Bloggess that there is a #oneword2016 Challenge and seeing I was already planning to choose a single word, I’ve decided to participate. The one word you choose is meant to be something that will help you focus on your main goal for the year.

Enough did that for me last year. There were many times when I felt I needed to do more or buy more items. Most of these times I remembered my word and felt better about only doing what I could or reducing the items I had rather than adding to them.

This year, I want to keep up the focus on the benefits I’ve received from Enough but focus more strongly on being able to increase (or at least better BALANCE) my activities.

I’m going to continue focusing on moving towards a simple, sustainable and meaningful life with a strong focus on finding ways to BALANCE my needs and wants. I’ll continue to try and single-task, try to get a good BALANCE of health, work, and social activities, and relaxation into my day/week.

If you haven’t worked it out yet, my word for 2016 is BALANCE.

I haven’t planned out the whole year but I have a lot that I want/need to achieve in the next 6 months so I’m focusing on that and trying to break it down into monthly and weekly activities…

In the next 6 months I need to:

• Complete my current consulting jobs for different local Council’s here in SA:
  • Biodiversity Trails – due end of January
  • Environment Action Plan 2016-2019 – due April/May
• Complete my Certificate IV in Training and Assessment – due by end of May
• Publish Foggy Frog and the Pain Gang Picture Book – we’re so close but it seems to take so long to get it all together!

On top of these tasks, I have several appointments as part of the ongoing management of my health and I want to have regular time with family and friends and build up my casual work a bit as well.

As you can see, there’s a lot going on so it’s going to be an effort to find ways to balance everything and continue to pace.

Tomorrow, I’ll give you an update on how I’ve been going with the No Buy Challenge the last few weeks. Let’s just say now that I’ve realised there were a few things that should have been on the exceptions list that I forgot, so I’ll be updating that tomorrow.

Do you have one word that’s going to guide you through 2016?

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?

I’ve been so excited to hear from you all about your thoughts on the most recent A-Z guide to a simple, sustainable and meaningful life. One of the questions I’ve been asked to share more about is how work fits in to pacing with a chronic illness.

One reader in particular approached me with her current situation and I could see a lot of similarities so I wanted to talk about the issue in more detail.

This lady has ME/CFS like me. I’ll let her share her experience in her own words (modified for privacy):

I’ve been working on trying to get my activity level up for a while now but have only been keeping track of my daily steps for about a month. At the moment I seem to be averaging about 4000-5000 steps a day which I’m really happy with. I think a couple of years ago I would’ve been lucky to average 1500-2000. My main problem at the moment is that my step count is very inconsistent. It can vary anywhere from 2000 steps a day to over 8000 a day depending on the activities I have on.

I’ve now been back at work for just over 3 months… I’ve only been doing short shifts (3 or 4 hours) but these shifts involve being on my feet and walking around for most of the time. This makes it hard for me to pace myself and on a work day I don’t think it would be possible for me to keep my step count below 8000. I then find that the day after I have worked I’m exhausted and my step count is very low.

In response to the reader’s concerns I’d like to offer some advice…

The weather here has been up and down with some extreme heat over the last few weeks. Unfortunately, this weather isn’t conducive to me being at my best.

I have been struggling a lot over the last week in particular with very high pain and fatigue levels. Keeping up with the daily blog posts and doing a minimal amount of other work or appointments takes most of my energy and the rest of the time has mainly been spent doing mindless screen activities (tablet games or tv).

My step count has dropped again to a minimum of 2,000 (half the minimum I’d built up to) but I’m not too concerned about that. The thing I’m most to concerned about is if this is a precursor to a crash like I had last year (which I haven’t fully recovered from even now).

I’m hoping by proactively resting and listening to my body I can avoid a major crash.

The problem is that I still don’t really know what caused the crash last year so I don’t know what I can do to avoid it.

On the other hand, I don’t want to go backwards because I’m being too cautious… so I am still trying to maintain a minimum level of activity and because it’s the newest and most meaningful addition to my routine, I’m trying to prioritise my work activities.

Now it’s time for another rest…

Do weather changes affect your health? What steps do you take to minimise the impact?