Tag Archives: Fibromyalgia

Pain Management while Pregnant: Living with Fibromyalgia and ME/CFS

06 Jul 17
Megan
, , , , , , , , , , , ,
No Comments

One of the issues I considered before we decided to even try to start a family was dealing with pain during pregnancy. Pain management while pregnant is a tricky topic. Many of the drugs available for pain management are either unsafe or untested for use during pregnancy. This was particularly true for the drugs I have found to be useful over the last few years.

There are some drugs that are safe to use but I made the personal decision to avoid taking drugs unless needed while I was pregnant.

PLEASE NOTE: I’m writing this post during my third trimester and publishing on my due date. By the time you are reading it, I may have had the baby.

Pain Management while Pregnant – drugs

The only prescription drugs I’ve continued using are my asthma medications (the benefit definitely outweighs the risks) and a very low dose cortisone cream for the rashes I’ve had on and off throughout the pregnancy. The doctor says these rashes are probably caused by hormonal changes.

When pain levels have been really bad I’ve been talked into using Panadol (paracetamol). However, because I know it doesn’t really do anything for most of my pains, I don’t take it often.

I also have a diazepam suppository sitting in my fridge for if the pelvic pain gets to a completely unbearable level. I haven’t tried this drug yet. It was recommended by my pelvic pain specialist as one that would be safe to use while pregnant if needed.

Avoiding drugs is a personal decision and one that I recommend you discuss with your health practitioner. I know of others with Fibromyalgia who have remained on some form of medication throughout their pregnancy as the benefits outweighed the risks for them. My main reason for deciding to take this approach is my tendency to react badly to many different medications.

Pain Management while Pregnant – physical therapies

– Acupuncture/Bowen Therapy

The pain management technique that has been beneficial for me during this pregnancy has been maintaining regular acupuncture/bowen therapy sessions throughout pregnancy. This maintained my ‘normal’ low pain levels throughout the first and second trimester.

In the third trimester my back, hip and pelvic pain increased. To deal with this, for the last month or so of the pregnancy I have increased my sessions to weekly from my usual 3 weekly schedule. I’m also hoping the acupuncture will help me to go into labour naturally before the hospital wants to induce me.

– Physiotherapy and Physical Supports

In addition to the acupuncture sessions, I have had support from several physiotherapists. The techniques they have suggested include a combination of massage, exercise and physical supports.

The physical supports they provided include a pregnancy support belt and a tubigrip. Both of these are meant to help with SPD pain. The belt I wore until I got so big that putting it on was uncomfortable. The tubigrip I wear almost daily to support my belly and hips. The only reason it isn’t daily is it makes the rashes worse so I balance pain and rash management on a daily basis. I also use my walking stick when needed to maintain my balance and reduce pain levels.

– Exercise for Pain Management

During the first trimester (and most of the second trimester) I maintained my pre-pregnancy exercise routine. This routine included maintaining a reasonable step count (I’d built up to 7,000 but cut back to around 4,000 by the second trimester), and regular yoga and gentle stretching classes at my local gym.

As this became more difficult I cut back to mainly water based exercises. The hospital I’m giving birth at runs hydrotherapy classes twice a week that I attend when I can. If I can’t, I do some of the exercises from these classes at my local pool at least once a week.

At home, I have focused on my pelvic floor strength and basic stretching.

Pain Management while Pregnant – other techniques

On top of the physical management techniques outlined above I have maintained my other pre-pregnancy pain management techniques.

These include:

Overall, pain management during pregnancy can be difficult. Especially if you live with a chronic illness and are trying to avoid medications as much as possible. Personally, I have found using a combination of physical therapies, meditation and relaxation allowed me to maintain my pain levels throughout most of my pregnancy.


First Trimester: Pregnant with chronic illness

06 Jun 17
Megan
, , , , , , , ,
No Comments

It’s my birthday and I’ve finally found some time to write!

As you’ve probably guessed I haven’t found the time and energy to write regular posts for the blog during this pregnancy.  As I mentioned in my last post, where I announced the pregnancy, I want to discuss what this pregnancy has been like for me. Starting with the first trimester, I’ll do a summary post for each section of this pregnancy.

Before I was pregnant…

As my regular readers would know, I’ve been living with Fibromyalgia and Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) (ME/CFS) for at least the last 4 years. I say at least the last 4 years, as that’s when it began to impact my life significantly. It got to the point that I stopped working and studying full time, and basically had no social life for a year or two.

During those first few years I spent a lot of time with doctors and specialists trying to get a diagnosis and working out what treatments and strategies worked (and didn’t work) for me in terms of managing the conditions.

Last year, I finally reached a point where many of my specialists were saying I was as well as I was going to get and that if we did want to start a family it was time to consider trying. After much discussion and research we decided that the potential risks were worth it and so we decided to start trying.

As a result, I stopped all my prescription medications (apart from seretide and ventolin for my asthma) and began focusing on other coping mechanisms.

The First Trimester…

Everything happened very quickly once we’d made a decision and I think both E and I were in shock to start with that it was all actually happening.

The research that we had done indicated that, for both the Fibromyalgia and the ME/CFS, a third of people feel worse during pregnancy, a third stay the same and a third improve. One of our biggest concerns was that I would be in the third that felt worse.

Thankfully that hasn’t been the case.

In fact, even though I suffered from bad morning sickness from before I even found out I was pregnant, my pain and energy levels actually improved during the first trimester. Enough that when we went on holidays to Queensland I was able to enjoy the trip a lot more than I thought I would.

Yes, I still had to rest daily and we had a couple of ‘do nothing’ days but I also managed to swim on the Great Barrier Reef and participate in a walk in the Daintree Rainforest.

Towards the end of the first trimester, my chronic illness symptoms settled back to what I consider to be ‘normal’ levels for me.

First Trimester Symptoms…

My main symptoms during the first trimester were:

  • constant nausea and ravenously hungry at the same time for the first 7 weeks
  • Increased energy for the first 7 weeks (less need for naps during the day)
  • Morning Sickness (vomiting started at 8 weeks and lasted through to 17/18 weeks)
  • Cramping
  • Decrease in general Fibromyalgia pain levels

First Trimester Management Techniques…

As I didn’t have too many symptoms, I didn’t need to change much in the way I was managing my health.

It was important that, although I had decreased pain and increased energy for those first few weeks, I continued to pace myself and not let myself get too run down.

When pain levels got uncomfortable my go to treatment options, which were all in place prior to the pregnancy, included:

  • warm (not hot) baths and showers
  • wheat bags
  • regular acupuncture (3 weekly)
  • meditation and relaxation techniques
  • maintaining a basic exercise routine (stretching classes and regular daily step count)

The last few weeks of the first trimester, and heading into the second trimester, got more difficult to manage as the morning sickness and fatigue got worse. Those weeks were spent mostly resting to avoid any major crashes.

Overall, the first trimester went well. I coped reasonably well with the new pregnancy symptoms because pain and fatigue had improved.

I avoided posting on the blog during this time, mainly because I didn’t want to announce yet and I was worried I’d say something that would give it away!

Postnote:

Before I take a break to settle into being a new mum I thought I’d make an effort to write a few posts and schedule them over the next few months, so hopefully my posts will be a bit more regular than they have been so far this year.

Just be aware that I might not reply to comments regularly from July as I think I’ll have my hands full for a while.

Foggy Frog Book Launch

Foggy Frog and the Pain Gang book launch in Pictures

26 Sep 16
Megan
, , , , , , , , , , ,
2 comments

On Saturday, 24 September 2016, we held a book launch party to celebrate the completion of the long awaited Foggy Frog and the Pain Gang picture book. I say “long awaited: because the book has been almost 3 years in the making and I first got support from the community through a Kickstarter campaign in March 2014.

The Foggy Frog and the Pain Gang picture book has been developed as a way of introducing people to the symptoms of invisible illnesses. There is a strong focus on the different types of pain that people may live with, but it also looks at symptoms such as brain fog and fatigue. As well as the main picture book part, the back of the book contains more in-depth information to help promote further discussion.

We had around 60 people attend the launch, including a few local politicians and key medical staff in the chronic pain field. It was a great opportunity to also raise awareness of the fact that these conditions are often being overlooked from a funding perspective, as well as from a general quality of life perspective.

I still have a bit of work to do to get the paperback version of the book available online, but you can get the Kindle version on Amazon now. You can contact me via the contact us page if you’d like the printed version (I have some of the Kickstarter print run still available for sale).

There is also a giveaway currently running through Goodreads (10 copies available) if you’re interested in trying to win a copy of the book.

Goodreads Book Giveaway

Foggy Frog and the Pain Gang by Megan Schartner

Foggy Frog and the Pain Gang

by Megan Schartner

Giveaway ends October 30, 2016.

See the giveaway details
at Goodreads.

Enter Giveaway

 

I really wanted to do the book launch this week, as it coincides nicely with Invisible Illness Awareness Week. However, due to the fact that none of the print-on-demand printers seem to allow A4 Landscape books, I had to redesign the book to be square for online sales. This should be available soon and I will let you know when it is!

I want to give a big thank you to everyone who helped make the launch a success. In particular, thank you to:

  • Erik for videography and money handling.
  • Akil, from Akil Madan Photography, for the images.
  • Vouch, from Black Sheep Cooking School, and Sophie for catering.
  • The Hon. Kelly Vincent for speaking.
  • My Step-father, Wayne for making the Ukelele as a door prize
  • Erik’s Amma, Erika, and my Step-father’s mum, Clarice, for helping to ice the cake.

Without further ado, here’s the book launch in pictures (we did record the speeches and I’ll share the videos another time)…

Foggy Frog and the Pain Gang Book Launch

This slideshow requires JavaScript.

stigma of chronic pain

The Stigma of Chronic Pain

12 Aug 16
Megan
, , , , , ,
5 comments

“It’s all in your head!”

“(S)He’s just faking it to get out of (work/school/insert activity here)”

” It can’t be that bad!”

“It must be good to be able to do what you want, when you want”

 

You just need to (exercise, eat this, do that) more/less”

 

1 in 5 people live with it but not many people understand it…

Chronic Pain

For the past 3 and a half years I’ve lived with a constant base level of pain, punctuated by periods of overwhelming and unbearable pain. Over that time I’ve heard many uninformed opinions and recommendations from strangers, friends and family, and even the professionals who are meant to be helping me. Sometimes I even judge myself, questioning if it really is all in my head. I’ve also heard stories from other people living with chronic pain that make the things I’ve heard sound trivial.

Statistics show that people living with chronic pain have a much lower perceived quality of life than the general population. I personally believe this is from the dual-impact of issues related to finding a pain management regime that actually helps and the psychological impacts of the myths and misperceptions surrounding these conditions which are invisible to those around us.

Managing Chronic Pain

Let’s take a quick look at the Pain Management Regime issues. There are many drugs and treatment options out there that can be helpful, however none of them work for everyone. For many with chronic pain, there may be no known cause or cure. This makes it difficult to work out what you should be doing to manage the pain. To top it off, if you do find a drug or treatment option that does help in some way, it seems more than likely that there’ll be side effects that make the treatment option not really an option at all.

Myths and misperceptions

Now, the myths and misperceptions surrounding chronic pain can be extremely detrimental to the mental health of those living with it. The constant disbelief and judgement of others can make you question yourself and the way you’re handling your condition. What makes it worse is that, for conditions like Fibromyalgia, there are still doctors out there who don’t believe in it at all and others who believe it is all in the persons head. These doctors send you off to a psychologist or, even worse, they do nothing and inform you to just push through it.

What we need is a better understanding and more empathy from ourselves and from others. We need to find a way to raise awareness of the prevalence of these conditions, and to counteract some of the myths and misperceptions. It is my hope that if we can get more people sharing their stories we can make a difference. There are still many people out there who do ‘just push through it’ because they have no support around them and they may not actually believe it themselves. It is only if we work together to raise awareness and to answer people’s questions that we can change the way people view chronic pain and make people aware of how big a problem it is in today’s society.

What can we do?

After meeting with Dr Meredith Craigie on Monday to discuss the Foggy Frog and the Pain Gang Campaign, I have realised the gap there is in information and support for younger people living with chronic pain; especially in Australia. As such, my goal is to initially focus the campaign on supporting this younger generation through teacher and parent education, and establishing a support group and related workshops and resources for young people living with pain.

My ideas are still in very early development phase but I hope with the launch of the Foggy Frog and the Pain Gang Picture Book in September I’ll be able to announce at least the first part of this wider campaign.

I’d love your input…

What do you feel are important points for teachers and parents to understand if they are to support young people with chronic pain?

What would be your number 1 tip for living a meaningful and fulfilling life with chronic pain?

I’ve joined a Gym! Exercising with Chronic Illness

26 Jul 16
Megan
, , , , , , , , , , , , ,
4 comments

A lot’s been happening around here lately! Preparations are underway for the Foggy Frog and the Pain Gang Book Launch and the AAEE 2016 Conference.

I’ve also added a bit more variety to my exercise routine by joining the new local gym (Council owned and operated).

The main reason I’ve joined is so that I could add swimming into my exercise routine but I’m also going to try out some of the classes they run.

Obviously, I’m going to focus on pacing and aim to not overdo it by adding too much too quickly but I’m very excited to have a bit more variety in what I’m able to do.

To date, my exercise routine has consisted of walks and riding my electric bike (or the stationary bike if it’s raining). I was doing some stretching and yoga, but this was very random (I wanted to do it but got bored of the same stretches over and over).

At the new gym I have access to an internal pool, aqua aerobic classes, body balance and mobilise (low impact stretching and weights) classes, and other gym equipment if I need it.

My plan is to use the pool twice a week, and try out the various low impact classes. In fact, I’ve already started…

After my swim on Monday...

After my swim on Monday…

I swam (8 laps of slow breast stroke) yesterday and today I tried out the Mobilise class. The class is stretching and light weights. I paced myself during the class; doing less repetitions, not using any weights and taking breaks when I felt I needed it. We’ll see tomorrow whether or not the class was too much for me but I think it was ok.

Outside of the gym, I’ll still ride at least once a week and go for walks with E (we’ve actually started playing that Pokemon Go game which has got us out of the house together more often).

The view from halfway through our walk on the weekend

The view from halfway through our walk on the weekend

Thanks to my current medication routine I’ve had less pain and slightly more energy than usual lately which has been great for allowing me to be more active.

What exercise do you do on a regular basis?

P.S. You may have noticed I didn’t post last week, because of everything going on at the moment I’m likely to be posting either once a week or fortnightly for the foreseeable future.

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

05 Jul 16
Megan
, , , , , , , , , , ,
No Comments

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?

Working with Chronic Illness – My experience Part 2

21 Jun 16
Megan
, , , ,
No Comments

This morning I was reading a post from my friend Julie Ryan over at Counting My Spoons where she shared a bit about the rough times she’s going through at the moment and how she’s trying to cope with them.

A lot of what she’s talked about in that post, slowing down and focusing on perspective and a positive attitude, are things that I’ve found have worked for me when learning to live a more sustainable and meaningful life with all the symptoms of a chronic and invisible illness.

I’ve found that, as I’ve learnt to cope better with the constant fatigue and pain that accompany me on a daily basis (hello Foggy Frog and all your friends), my illness seems to become even more invisible.

When the pain first struck it was obvious to everyone around me that something was wrong. I wasn’t able to function at all, I was scared because I didn’t know what was going on, and my body language made it clear I was in pain.

These days it takes a lot of pain and very high fatigue levels for me to look sick. Having accepted what I have to live with on a daily basis, I’ve learnt to ‘ignore’ the pain and the fatigue by focusing on what I can do and simply not thinking about it too much.

These days when I’m out I’m often greeted with ‘you look well!’, ‘it’s good to see you looking so healthy’, or other statements to that effect from people who know me. Inside I might still be feeling like I’m dying but on the outside I look perfectly fine.

This facade does crack occasionally when I overdo it, and those who have seen the sudden change often remark that I looked well one second and the next I looked like I had no energy at all.

What does all this have to do with working?

In most work places you have at least some face to face interaction with other people. People also expect you to look healthy while you’re at work. If you go to work looking like death warmed up you’re likely to be sent home!

I’ve found that being able to slow down and focus on the positive aspects of my life I’m better able to cope with change and with the pressures working puts on me.

Many with chronic illnesses have to work. These people have no choice but to do something in order to have enough money to provide themselves, and sometimes their family, with basic requirements such as food, shelter and clothing.

Others are supported by their family or were lucky enough to have already saved enough money to retire and focus on their health. However, these people still need to feel like their contributing and are ‘worthwhile’.

Personally, I’m lucky enough to be supported by my husband. I work because I want to be doing the work not because I need to in order to survive. I ‘need to’ work in order to maintain my own sense of self-worth and to feel like I’m making a contribution to society.

Because of my own personal situation, I can choose the type of work I take on. At this point in time, half the work I’m doing is voluntary (unpaid work).

The benefit of starting with voluntary or very casual work is the flexibility. Although I still feel guilty occasionally for not doing what I wanted to get done I can just step back and say sorry I need a break if things get too difficult for me. Thankfully I’ve only had to do that a few times so far and I believe that’s because I am taking steps to allow my health to come first.

Building up gradually. I didn’t jump in head first into working after I reached the point I felt I was capable of it. Instead I started with as little as half an hour to an hour a week and slowly built up from there.

I have had set backs along the way but overall I’ve been slowly improving my health and increasing my activity levels. Set backs are, I believe, inevitable when you live with a chronic illness.

Understanding the fluctuations in my health. As I said, I believe set backs are inevitable with chronic illness. My health often fluctuates. Sometimes I can predict it and sometimes I can’t, the important thing is to listen to my body and stop when I need to. The changes in weather through the seasons causes my pain and fatigue levels to fluctuate. Knowing this, I can make sure I don’t schedule too much in the first few weeks of winter and summer (the 2 seasons I’m affected the most). For me, understanding this has been an important part of pacing my activities.

Scheduling rest. Especially early on in my illness, my main tool for pacing was to have set rest periods and starting with very small amounts of activity broken up with larger periods resting. Today I don’t ‘rest’ in the same way I did when I was first ill. Back then I actually slept during the day a lot. These days, unless I’m having a crash and literally can’t keep my eyes open, I try not to sleep during the day at all. My rests are now periods of meditation, listening to audio books or lying in front of the tv (tv used to count as activity when I was really struggling).

Setting goals and keeping a To-Do list. Living with Foggy Frog as a constant companion, I often struggle to remember things. This can be very frustrating so I now keep an ongoing To-Do list that I can check regularly and mark off what I achieve. I also break down any big goals (such as my work projects) into smaller steps so that I only need to focus on one thing at a time.

I aim to be realistic about the timeframes I give myself for projects and To-Do list items. For example, most days I’ll only set myself 2-3 small items to achieve. If I do more I add that as I go but as long as I can mark something off my list each day, I’m generally happy.

This week my focus is on the Foggy Frog book. Yesterday I sent out the survey to allow backers to vote on the cover design and today I’m writing my blog posts. Over the last few days I’ve sent some emails to prominent people asking if they’d like to preview the book and provide comments. The rest of the week will likely be spent following up on publishing quotes and the emails, and beginning to plan the book launch.

How do you slow down and focus on perspective to minimise crashes and maximise your success at work?

Working with chronic illness: My experience

14 Jun 16
Megan
, , , , , ,
2 comments

Back in December of last year, I answered a reader’s question about pacing and working. In this post I talked about some of the issues we face when we’re attempting to work with a chronic illness. We talked about our inability to be consistent and some simple tips and tricks for trying to avoid crashes as a result of working.

It’s been about 6 months since I wrote this post and in that time I’ve been gradually increasing the amount of work I’m doing myself. I’ve been very fortunate that, although I was unable to keep the job I was in prior to my first major crash, I’ve been able to use the connections I’d made when I was working full time to get establish a very flexible working environment for myself since then.

Back in 2013, I was working full time, studying full time and exercising every day (daily walks and gym at least 3 times a week). That all stopped suddenly when I woke up with pelvic pain so bad that I ended up in the emergency department all day while they tried (and failed) to work out what was causing it. I took a few days off on sick leave and then attempted to return to work even though the pain hadn’t gone and the fatigue was getting worse by the day. Obviously, that wasn’t working so I was yet again on leave.

At the time I thought it’d just be a few weeks and I’d feel better and be back at work. I had test after test to try and work out what was wrong with no clear results. As the weeks dragged into months I began to despair that I would never be able to get back to work.

Overall, I had almost 2 years without working at all before I got to a point where I felt confident with my ability to maintain some semblance of consistency and began to look at returning to some form of part time work.

Initially, I attempted to return to my previous role in a part time capacity, however my employers weren’t keen to take on the liability of having me there if I was to get worse again once starting back at work so I began to look into other options.

I have always wanted to work for myself and both E and I saw this as an opportunity to see how I would go with self employment, however I still wanted to have some form of ‘regular’ income coming in.

While looking at self employment opportunities, I approached an old boss to see if he had any casual work available for me to do as a means of seeing how I go with adding work back in. He did and he’s been great ever since then. Originally I thought I’d be able to build up to 8 hours a week of work for him within a few months but I quickly learnt that this wasn’t realistic. To this day, I sometimes manage that level of work for him but most weeks I only manage an hour or two a week (and some weeks none at all).

Having a boss who has been aware of my limitations from the start and willing to be flexible about how much work I take on has been great. I take on the jobs that don’t necessarily have a fixed deadline as they’ve been waiting for so long for clients to provide their data and so it’s not a big concern if I’m unable to complete them as quickly as I’d like. I’m also able to work from home which is a huge benefit as the few times I’ve attempted to head into the office to work, I’ve ended up paying for it after.

Although I like the fact that this work is paid by the hour, I’m able to work from home, and my boss is extremely flexible, it’s not the type of work I’m really interested in doing long term. This is where self-employment has come into play.

I’ve got two distinct areas that I’m working in from a self-employment perspective, both of which I’ve joined together under the LiveKen banner.

The first, and at the moment the largest (bringing in the most income), side of the business is environment and sustainability consulting work. I reached out to my contacts at the local councils to see if anyone had small manageable projects they needed a consultant helping on. I made it clear that my biggest interest was in developing and delivering workshops for the community around living simple, sustainable and meaningful lives but that I would also consider research based projects that fit within my skill and knowledge base. From this initial call out I got two projects:

  • Developing a 3 year Environmental Management Plan for the City of Prospect. This has been a large and ongoing project and we’re about half way through the process now a year on from when we initially started. It’s been a great project with lots of community and staff engagement.
  • Developing a series of Biodiversity Trails for local schools within the Campbelltown City Council. This was also a large project for me and took me much longer than I expected to complete thanks to the ups and downs of my health.

From doing these two projects I’ve learnt a lot about my current capabilities and about the processes and people I need to have in place if I’m going to be successful at working for myself and delivering projects on time and within budget for my clients while maintaining (and if possible improving) my health.

I’ve learnt that when proposing timelines for larger projects like this, I need to schedule in additional time than I think it will take me to allow for crashes and other health related delays. It’s also good to have someone lined up as a backup person (a subcontractor) to complete the work if my health gets to a point that I’m unable to do it.

These two large projects have also led to a few workshops with schools and the Council libraries on topics such as revegetation and up-cycling materials. These have been great for me because, although they don’t pay as well, they have a clearly defined timeframe and allow me to connect with a large group of people within a short space of time. I do need to make sure I schedule time to rest both before and after these workshops but because there’s no ongoing ‘stress’ related to completing them, I seem to recover quite quickly afterwards.

The second branch of the business is invisible illness advocacy. This actually started before I’d established LiveKen, with the idea of a picture book about invisible illnesses and chronic pain. The successful Kickstarter campaign we ran for the Foggy Frog and the Pain Gang picture book, has allowed me to focus on finishing the pictures with the knowledge that I will be able to publish and over 100 copies of the book will be going out into the hands of people who live with an invisible illness to share with their friends.

This is another project that has taken me MUCH longer than I expected it to. We are finally at the point where I’ll be getting quotes for printing within the next few weeks so keep your eye out for more information about this in the next month or so. The plan is for the picture book to be the first step in a larger awareness raising campaign.

This post is getting quite long, so I might stop there today and do a detailed hints and tips post later.

What tips or tricks do you have for working with a chronic illnesses?

A week in my life with Chronic Illness

18 May 16
Megan
, , , , , ,
6 comments

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?

Share Your World – Week 5

04 Feb 16
Megan
, , , , , , , , , , , , , , , , , , , , , ,
No Comments

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.