Tag Archives: chronic illness

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:

• Pacing
• TENS machine (during the 3rd trimester)
• Heat (wheat bags, baths, showers)
• Hypnotherapy/Psychological support
• Meditation

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.

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.

You may have noticed I’ve been missing in action lately. There is a very good reason for this and it’s time to make an announcement… Life has taken a major turn in the last 6 months.

Not only did we launch the Foggy Frog and the Pain Gang picture book in September last year, and help to organise and host a national conference in Adelaide in October, but on a more personal level E and I are expecting a baby! Due date 6 July 2017.

Yes, you read that right! We’re over half way to meeting this much awaited new addition to our family.

Why has it taken me so long to make this announcement?

Simple. I wanted to tell as many people in person as we could before I announced online. If I do know you offline and haven’t had the chance to tell you in person yet, I apologise. I’ve tried my hardest to see as many people as I could over the last few months but I felt that I couldn’t really hold off much longer with making this announcement as I’d been avoiding blogging until I was ready to announce.

Pregnancy, Parenting and Chronic Illness

Those of you who have been following me for a while, or who know me in real life, know how important the idea of being a parent is to me. You would also know how much thought, research and discussion has gone into the process of deciding whether or not to try for a baby. We obviously made the decision to try, but it was not an easy decision to make.

Living with several chronic illnesses has limited what I’ve been capable of achieving over the past few years. I’ve very slowly built up my work hours and my capacity to exercise and participate in social activities to a point where I felt comfortable coping with whatever impact being pregnant and being a parent may have on my health.

I know that it’s not going to be an easy process but it’s something that is important enough to me that I’m willing to modify what I do to make this work.

Over the next few weeks I’m hoping to begin a series of posts that talk about what it’s been like so far being pregnant with fibromyalgia and chronic fatigue syndrome. While reading these posts please remember that I’m sharing my personal experiences in the hope they’ll help others.

What I experience may not be the same as what you experience. In fact, the research I did before becoming pregnant showed that people’s bodies react in very different ways to being pregnant with these conditions. There’s no way to know how it would impact you in advance. All you can do is have strategies in place for coping with the wide variety of possible outcomes.

Anyway, enough of me talking for now… I’m just so excited to finally be sharing the news. We’re going to be parents!!!

Hello in there!

Hello, yes I’m still here and still alive. Today I want to talk to you about remembering to Say No.

I’ve been wanting to write this post for a few weeks now but have struggled to find time when Foggy Frog isn’t being a pain!

With so much going on, writing this post has been a good reminder to me that I need to remember to pace myself and listen to my body. Although physically I’ve been able to do so much more, I’ve found mentally I’ve been struggling the last few weeks.

This means it’s time to reevaluate again and find what I can step back from to achieve balance again.

Pacing is such an important part of my management strategy for the pain and other debilitating symptoms, such as the fog and fatigue. With the changes in my medications over the last few months my pain levels have been lower and, as I said above, I’ve been able to do more than I have in over 3 years.

I’ve joined a gym and have found that doing something most days (generally a stretching based class or a swim) has been beneficial for my pain levels as well. My step count is back to an average of 7,000; a level I haven’t managed since December 2014.

I’m still working on the Australian Association of Environmental Education Biennial Conference occurring in October, and my upcoming book launch on 24 September… less than a month to go! This has meant meetings almost every day about one thing or another.

As you can probably tell there’s a lot going on at the moment. In fact, it’s a little too much so I’ve been slowly stepping back from the conference planning and trying to work out what the essential things are for me to get done for the book launch to be a success.

I want to keep up my physical activity, as I’m trying to make sure I’m as healthy and strong as possible for when we start trying for a family (something we’re seriously talking about at the moment). So that means saying No to some of the other activities in my life.

Right now I’m saying NO to:

• taking on any more for the AAEE Conference planning
• to other volunteer opportunities that don’t have any connection to possible paid work in the future
• meetings I can postpone until later

I’m saying YES to:

• time with family and friends
• actions that will progress the book launch
• actions that will help me be healthier and stronger (exercise, diet, rest)

What do you say No to in order to say YES to the things that matter?

“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?

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…

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

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.

Imagine waking every day and being unsure about what you’ll be able to achieve that day. You may wake up to pain levels so high that even rolling over in bed is too painful, or maybe your energy is so low that you can’t even get your eyes to open properly…

Maybe, like me, you don’t need to imagine this at all. Maybe you live with a chronic illness that makes your life unpredictable and very VERY frustrating.

When you have a chronic illness it can be quite easy to be hard on yourself for all the things you struggle to do, or simply can not do, on a daily basis. These things can be as simple as taking a shower or brushing your teeth. Things that others may take for granted.

One tool that I’ve learnt to have in place to help me and my extended family and friends cope better with my multiple chronic illnesses is to find a way to separate myself from the illness. When I’m unable to do something, I (usually) remember that I shouldn’t be angry or frustrated at myself. It’s the illness and it’s symptoms that I should be angry and frustrated at.

A great way I’ve found to separate me from my conditions, is to personify my illnesses (or at least the main symptoms I face). The characters I’ve created are Foggy Frog and the Pain Gang. By personifying my symptoms in this way I can say things like “it’s Foggy Frog that is making it difficult to make a coherent sentence today” or “Stabbing Spider that has taken my breath away.”

Having this separation between myself and my illness helps me keep a positive and open attitude towards my life. It gives me room to focus on the things I can do or the things around me that I can be grateful for.  I can focus on all the things I am; I aim to live as simply, sustainably and meaningfully as possible. I am passionate about working with others. I am a loving wife and caring friend. I am an advocate and an educator. I am not just my illness!

The separation also helps with my relationship with my husband. When he’s frustrated at what I can’t do, we can both be angry and frustrated at the illness and I don’t feel the need to take things too personally. We are able to talk openly about how we feel and, as long as we can maintain the separation between me and my symptoms, the anger should be aimed at the illness and not me.

The idea of separating yourself from your illness is generally discussed from the point of view of mental illness such as OCD, Schizophrenia, Bipolar or Depression, but I’ve found it useful living with physical conditions such as Myalgic Encephalomyelitis and Fibromyalgia and I’m sure it can be applied to many other conditions.

Chronic illness makes life difficult at the best of times. Having to deal with both constant and unpredictable symptoms can take a major toll on your self esteem and general mental health. However, by separating ourselves from our illnesses we can nurture a healthier relationship with our bodies, our lives, and our families that will allow us to remember who we actually are. We are not our illnesses.

What techniques do you have in place to separate yourself from your illness or to otherwise maintain your mental health?

“Are you feeling better? You’re looking good!”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How do you decide how much to share?

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?

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?