Tag Archives: Our Journeys

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!!!

As I mentioned last week, it’s National Pain Week in Australia this week. I will be sharing my story over at the National Pain Week website and at My Invisible Life later in the week. I’ll also be talking to local media, starting with ABC Riverland Today at 10:45 this morning.

Living with chronic pain can be frustrating, overwhelming and disempowering, however it is still possible to live a meaningful life while coping with it.

With over 2 years experience of living with chronic pain myself, and having spoken to many people who have lived with it a lot longer than I have, I’ve found many tips and tricks that have helped me live a reasonably quality and meaningful life despite constant pain and fatigue. Below I share my top 3 tips for living with chronic pain:

1. Listen to your body and pace yourself
2. Don’t stop researching and trying new things
3. Eliminate the unnecessary so you can focus on what is meaningful to you

Listen to your body and pace yourself

One of the first things I learnt on my journey with chronic illness is that my limits had changed. Before chronic illness I was a high achiever who had to always be doing something active and challenging. Since becoming ill, I still need to be doing something but I’ve had to cut back on the level of activity.

On a day to day basis I need to consider how I am feeling and plan my day accordingly. If my body has higher pain or fatigue levels than normal, or my brain is complete fog, then I know I need to step back and rest most of the day. If my pain levels are lower than normal or I’m feeling energetic (doesn’t happen that often but it could!) I need to remember not to push too hard or I will crash later on.

 

In general it’s best to aim for consistency and to allow your body to rest when it needs to.

To give you an example, I’m just coming out of a 2-week crash so my step count and activity level has been cut way back to an amount that i can maintain even if I’m feeling really bad. I have to minimise work and social activities and focus on resting. On any given day I usually only have one or two key activities lined up, which could be as simple as make a meal. While I was in the crash I didn’t really do any activities and most days were spent on the couch.

Don’t stop researching and trying new things

For many of the causes of chronic pain there is no known reason or cure for the pain. As a result there is usually always someone claiming to have the solution. Although it’s important to consider each solution offered to you carefully it is good to keep an open mind and try many different things.

What works for one person may not work for another.

I’ve tried multiple prescription drugs, none of which helped. In fact, most of them caused side effects worse than the symptoms they were meant to be helping. For other people though these drugs have helped.

I’ve tried (or I’m trying) physiotherapy, various exercise programs with guidance from an exercise physiotherapist, acupuncture, breathing techniques, a tens machine, and hypnosis.

Eliminate the unnecessary so you can focus on what is meaningful to you

Because of my limitations I have gone through phases where I’ve felt that my life had no meaning. To help me get over that I’ve had to focus in on what is meaningful to me.

I’ve worked on identifying my values and changing my lifestyle so what little energy I have is used doing things that fit with these values.

Since living with chronic pain I have taken up blogging so I can still contribute to the wider community, I’m focused on shopping and living as sustainably as possible, I meditate daily and practice gratitude, and I make time each week to spend at least an hour with family and friends.

I have eliminated my gym membership (I can’t exercise to that extent at the moment any way), full time employment (again beyond my limitations), and cleaning the house (we get a cleaner in fortnightly to do the major cleaning, and I’m slowly decluttering so there’s less to pick up and care for around the house).

Bonus Tip: Have Fun

I personally believe the most important tip I’ve been given on my journey towards a simple, sustainable and meaningful lifestyle while living with chronic pain, is to focus on what makes you happy and to have fun.

Tasks such as cleaning can be outsourced and when you have limited energy to contribute to society you are more likely to be happy with your life if (as in the tip above) you focus on what is meaningful to you and make sure you do at least one thing to have fun each day.

Whether it’s taking the time to look out the window and connect with nature, reading a good book or spending time with family and friends, it’s important to make time for fun in your life.

What tips would you give someone who was living with chronic pain and struggling?

It’s been a while since we’ve done a post here at LiveKen and there’s a reason for that! We’ve been busy running our first online workshop, Back to Basics: A life with Meaning.

We’re into week 4 of the 6-week workshop now and I have to say I’m very happy with how it’s going. I’m actually working through all the activities along side the participants and have found it extremely helpful so far. Over the next few weeks we’ll be using the insight we’ve gained into what is meaningful for us to create our own plans for moving forward to a more simple, sustainable and meaningful life. I promise to provide more of an update in the near future, however the next few weeks are looking very busy for me, especially next week.

National Pain Week Australia

20 – 26 July 2015

It’s National Pain Week here in Australia and there is going to be a lot of media coverage around living with chronic pain.

I’ve volunteered to be a storyteller for the week and will be sharing my story via the National Pain Week Website and in the local media. I already have a radio interview lined up for Monday and there looks like there may be more coverage opportunities during the week. Keep an eye on our Facebook page and Twitter for updates of exactly when and where you can here from me during National Pain Week 2015.

In other news, those of you who followed me before at My Chronic Life Journey would have noticed it’s been a very long time since I’ve posted or made any changes there. Unfortunately, I’ve had some technical difficulties over the last few months and currently find myself locked out of the site. I’m trying to rectify this at the moment because I know that I have quite a few loyal followers there who haven’t yet moved over to this site.

 

I turned 30 last weekend.

Those of you who follow us on Facebook or Twitter would be aware that my husband’s 30th was only a few weeks earlier. We decided to do a joint party on my birthday (it was Saturday) and invited friends and family to join us. We had an amazing day with close to 50 people joining us to celebrate.

I put a lot of effort into planning the party so that it would be aligned with my values and life goals.  By that I mean that I attempted to plan the party to be as close to zero waste as possible, and to be focused mainly on spending time with family and friends.

I created a large stack of cloth napkins which did get used, however when the cake was cut paper napkins were still used to distribute it.
The napkins I made were from leftover material in my sewing collection, mainly the scrappy bits too small for anything else.

Most of the food was homemade finger food with cocktail pies, pasties and sausage rolls purchased from the local bakery to supplement the food supply.

We used as many reusable items as possible and what wasn’t reusable I aimed to make compostable (cornstarch cups, bamboo plates, paper straws).

Although I did my best to pace myself in the days leading up to and the day of the party, it was still a much busier week than I would normally have and I have spent the last few days recovering. I’m starting to feel better now (Wednesday – 4 days after the party) but pain levels and fatigue levels have both been rather high the last few days.

Before I go further with this post, I just want to apologise for the large gap between posts lately. Both Janelle and I have been very busy working to put together the Back to Basics Workshop which will be starting in the next few weeks (You can still join if you’re interested).

Turning Thirty: Reflections

Large life changes are always times to reflect on where you have come from and consider where you want to go moving forward. Turning 30 is one of those times.

Looking back over my life I have always had pretty clear ideas of where I though I would be by the time I turned 30. Although some of these things have come true, my life is nothing like what I had imagined (as you’d expect).

My childhood and teens were spent making friends, spending time outside and getting to know the world around me. As I moved into my 20’s it became more about getting to know myself and becoming clearer about where I wanted to head.

During my 20’s I married my long term boyfriend, we bought our first house together and moved in, and got our own pets.

Early 20’s were focused on finishing study and starting my career as well as focusing on my health by exercising regularly at the gym.

Late 20’s my vision of myself, my career, and my health all changed when chronic pain and fatigue became a part of my life. My goals had to change to fit into my new reality. I could no longer be the ‘gym junkie’, the active outdoors person I was before…

Turning Thirty: Visions

Although part of my vision has stayed the same, I still want a family and to work in community engagement and sustainability,  most of it has now been modified.

How do I see my 30’s going?

I will have a family (biological or adopted) and will be working in community engagement and sustainability field by consulting and providing services through this site.

I will find balance between work, social, and me time. This will include time for meditation and rest and some form of exercise (at this point walking and very basic yoga).

By finding balance and pacing well, I will recover to a point where I can enjoy travelling with my husband and family.

Our life will be as simple, sustainable and meaningful as possible.

Turning Thirty: The Plan

To make my vision come true I will need a plan. The plan is to answer the following questions:

What would make my/our life meaningful?

I’ve already begun answering this question by completing the 100 Goal Challenge last year, but through participating in our Back to Basics Workshop I’m going to review those goals and reassess what is meaningful to me.

I will also have discussions with my husband about what is meaningful to him so that we can make our future plans together.

How can I simplify my life?

A simple lifestyle is key to living well especially with chronic illness. By identifying areas in my life that I can simplify I should create more room to do the things that I meaningful.

Steps I’m already taking towards this are:

• Hiring a cleaner. Over the past few months I had been doing the cleaning myself again. To begin with I managed to keep up and do a good job, but I’ve found that as I’ve begun adding other meaningful activities into my life (like work), I no longer have the energy to do the cleaning as well. For the cost of $75 a fortnight it is worth having someone come in and clean for us.
• Simplifying my wardrobe. I’m finally getting to a point where I’m happy with my wardrobe. Through my decluttering efforts I’ve removed over half the items in my wardrobe that were not comfortable, didn’t suit my lifestyle, or were worn out and stained. My next post I’m going to share in detail what is left in my wardrobe.

How can we be more sustainable?

Because sustainability is one of my key values, this is a question that I’m constantly asking myself. I’m attempting to move us from single use and disposable items towards ones that can be reused over and over. Buying quality items that last (instead of large quantities of items) is also key to aiming for a more sustainable house.

This area is one that causes a bit of tension in our house though as my husband doesn’t necessarily understand my strong focus on this value. I’m not saying he doesn’t believe we should do our part to help the environment, it’s just that he thinks I take things too far a lot of the time. For example, he rolls his eyes each week when I take out my keep cup to use when we get takeaway drinks, and he doesn’t feel comfortable using my cloth bags for vegetables or asking the butcher and baker to use my containers (instead of plastic bags).

Another part of being sustainable is to be financially secure/independent/whatever term you’d like to use. This is something that I’m spending a lot of time researching at the moment. Security is one of my husband’s biggest values and so making sure we have enough money to live the lifestyle we want to and achieve our goals is very important to us.

Financially speaking we want to make sure we have enough saved for retirement (so we don’t have to rely on a pension that may not be around), we want to be able to travel and buy nice things when we want to (we have a large lego collection, good quality camera and camping gear, and my husband maintains his bikes), and we want to be debt free.

In general we are doing well in this area (our mortgage is our only debt) but, given I’m pretty much not working at the moment (I don’t bring in any regular salary), I’m not having money put into Super for me and we basically have to live off my husband’s salary. To me setting ourselves a financial plan for the next 2-5 years and belong is a key step to achieving our goal to live a simple, sustainable and meaningful life.

Next week I’ll be sharing my simple, sustainable, and (almost) minimal wardrobe with you.

Do you have a clear vision for the future and a plan to get there?

Have you got a financial plan in place to help you achieve your goals?

 

Today is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and Multiple Chemical Sensitivities (MCS) Awareness Day.

#May12BlogBomb

Last year, to help raise awareness, I wrote a letter to my illness over on My Chronic Life Journey as part of a blogging campaign begun by Sally Burch over at Just ME (#May12BlogBomb).

This year I’m participating again. The theme for 2015 is ‘A Vision for the Future’.

Like Sally, I feel that May 12 Awareness Day is about helping others who don’t live with these conditions to better understand what life is like for those of us who do. (Not that awareness raising should only occur on one day of the year.)

What I’m hoping to get across today is that, although we may have many challenges in our day to day life that ‘healthy’ people don’t need to consider, we still have the same hopes and dreams for the future.

So, now that I’ve provided some background information let’s get on to my response to the theme…

Visions, hopes and dreams

Although bad health may limit my ability to undertake many activities people consider to be ‘normal’ for someone my age, I haven’t let this steal my hopes and dreams for the future.

Turning 30 this year has led to me thinking more and more about where my life is heading and what I have achieved so far.

I have achieved so much with my life so far that I am proud of, including:

• Completed my Arts and Science degrees with honours in the science.
• Worked with individuals, communities and businesses to create a more sustainable future.
• Raised funds to publish a picture book for raising awareness of invisible illnesses (due to be published later this year)
• Married the man of my dreams
• Travelled interstate and overseas for work and holidays (before getting ill)

Although I’ve achieved so much, there is one dream that always seems to be just out of reach for me… Having a child and starting a family.

This is an ongoing issue for me, and something that my husband and I have been discussing quite a lot lately both with each other and with my doctors and specialists.

Although my dream was always that my family would at least be started before I was 30, that is not going to happen. If everything goes well, I may have my first child while I’m 30 but even that seems unlikely.

There are so many additional concerns to consider when thinking about starting a family when you live with a chronic illness.

• What impact will my conditions have on my ability to conceive and carry a child to term?
• What impact will pregnancy have on my symptoms? increased pain/fatigue/nausea?
• How will I cope when the child is born?
• Will any of the medications I’m on affect my pregnancy/child?

All of these questions are ones I’ve been asking myself, my family, and my doctors and specialists.

We’ve been unable to get a clear answer from any of the doctors or specialists which makes it hard when trying to make an informed decision.

My husband, rightly, has concerns about my health and my ability to cope with pregnancy, birth and child rearing. I’m also concerned about how my body will cope with it all but to me it’s worth it if I’m able to fulfil my lifelong dream of becoming a mother.

The closest we’ve had as a response from the doctors is that the pelvic pain, currently thought to be caused by Pelvic Congestion Syndrome, should not get worse with pregnancy given that I’m having success in reducing it with the pelvic physio’s advice and guidance. In regards to my ME/CFS and Fibromyalgia, none of my doctors or specialists have had enough experience with pregnancy and these conditions to be able to say what may happen.

So, as you can probably tell from all of this, my biggest vision for the future is to be a mother.

My vision does include other things, such as increasing awareness of invisible illnesses and helping others live their own simple, sustainable and meaningful lives, but being a mother is definitely at the top of my list.

What is your vision for the future?

Don’t forget about the opportunity available to you at the moment to join us for our first ever online workshop to help you take the first step towards your own simple, sustainable and meaningful life. Read about it here.

Are you looking for a simple, sustainable & meaningful life?

We’ve taken the plunge, and are planning to share our journey with you and help you start your own journey via a 6-week online workshop.

The workshop will cover the following topics:

• What makes life meaningful for us?
• Identifying our values, passions, and life goals
• What does it mean to be sustainable?
• Are our current lifestyles sustainable?
• Developing an action plan towards a simple, sustainable and meaningful life.

What do we get?

This 6-week workshop will begin 1 June 2015 and will consist of regular emails with guiding questions and activities and group discussions via Facebook.

At this stage we are also planning to run at least one webinar during the 6-week period.

Everything will be available for you to access in your own time, and you will have lifetime access to the LiveKen Community via our closed Facebook Page.

How much is the workshop?

The workshop costs a minimal AUD$25  AUD$19.95** and you can sign up using the link below.

** We’ve reduced the cost to make the course more accessible for you.**

Once you’re payment has been received, you’ll be sent a link to access the Facebook page and you can introduce yourself to the other participants before the workshop commences on 1 June 2015. mid-June.************We’re working extra hard to make the course contents as exciting and useful as possible. As a result we’re postponing the start until mid-June. This gives you another few weeks to sign up for the workshop*****

I look forward to sharing this journey with you and hope to see many of you online in June.

HEALTH – an acronym and guide for living your own simple, sustainable and meaningful life

Hopes and Dreams – Just because you’re not as healthy as you once were, doesn’t mean you need to roll over and forget about everything you ever wanted to do in you life. You are still you, and with a bit of support and modification it’s still possible to live a meaningful life in which you can fulfill your hopes and dreams.

Exploration – You have passions and values that feed into your hopes and dreams. By exploring what your values are and what you’re passionate about you can discover ways to create your own simple, sustainable and meaningful life. One of the best ways I’ve found to identify your passions and values is to participate in the 100 Goal Challenge. Through this process I was able to identify that family, making a difference, and living sustainably are the highest things that I value in my life. This fits well with my dreams to start a family and run my own business helping others live simple, sustainable and meaningful lives.

Action – Once you’ve identified your hopes and dreams, and explored your passions and values the next step is to take action. Decide on one small step you can take today to move yourself one step closer to the life you want to live. My first steps included setting up this blog, fundraising through Kickstarter to publish the Foggy Frog and the Pain Gang picture book (happening later this year), and networking to find opportunities to help others.

Listen – Your body knows what it is capable of. Make sure you pay attention to changes in symptoms and pace yourself accordingly. Although I’d love to do everything I want as soon as I want, my health dictates that I can’t. By making sure I rest when I need to I’m able to do more in the long run as I’m less likely to crash.

Talk to others – Having a network to support you is important if you actually want to live your own simple, sustainable and meaningful life. The best way to create that network is to talk to others. Share your ideas, form partnerships and build a community around you. I do this through social media and this blog, talking with neighbours, friends and family, and identifying relevant workshops and conferences to attend when I’m well enough.

Highlights and Reflections – As we move through the process, it’s important to take time to identify the highlights, reflect on where you have come from and where you are going. People do change over time so it’s important to make sure that the path you’ve set yourself on is still the right one for you. By doing this regularly you can make changes as you need to so that you can maintain a simple, sustainable and meaningful (to you) lifestyle.

I’ve been following this guide for the last 12 months and I believe it has put me on a path to a simple, sustainable and meaningful life despite the problems living with chronic illness throws at me. This is not a be all and end all guide but a broad overview of things that need to be considered.

Have you focused on your H.E.A.L.T.H.?

What steps have you taken towards your own simple, sustainable and meaningful lifestyle?

I must apologise for falling off the band wagon with the HAWMC posts. I’m still working out how to pace myself with the new casual work.

 

I missed yesterday’s #HAWMC post on Stress Awareness so I’m combining it with today’s topic… Travel.

Managing stress is a vital part of learning to live with chronic illness. Especially with conditions like Fibromyalgia and Myalgic Encephalomyelitis (ME/CFS) which can be exacerbated by stress. Even for a healthy person stress can have a negative impact on your life.

So how do we deal with stress?

When I was healthy I used to deal with stress by exercising… a lot! I would go to the gym most week days and work out hard for at least 30 minutes and walked everywhere I could.

My husband reduces his stress levels by riding his bike.

Exercise has been proven to act as a natural stress reliever.  The endorphins released by our bodies when we exercise make us feel good and relax.

But what if we can’t exercise? Or at least have limited ability to?

As I’ve mentioned previously, my exercise routine is no where near as extensive as it used to be so I’ve had to discover new ways to minimise and manage stress.

I still walk when I can (although this is no where near as often as I like), and I still do some yoga each day. This alone is not enough to keep my stress levels at a manageable level.

These days, I’m more likely to manage my stress levels by stepping back and finding a way to relax. I have hot baths, meditate, and generally avoid situations I know will be too stressful for me.

When considering stressful situations I take into account the physical, mental and emotional impact a situation could have. I have to avoid and minimise extremes in any of these aspects of life in order to maintain my health. I do this through pacing.

Travel and Stress Management

Travel is one area of my life that has had to completely change since the ME/CFS and Fibromyalgia. When I first fell ill, we had been planning an African safari for the next year. That obviously hasn’t happened and probably will not happen any time in the foreseeable future.

Although I’d love to go see the African wildlife and have a wonderful adventure with my husband, I know that the holiday we had planned would be too stressful for me. There would be the physical stress from actually travelling to the destination and the many activities we had planned that required walking and hiking. There is the emotional stress of becoming overexcited by the prospect of the adventure and the mental stress of planning the trip and making sure everything is planned properly.

Instead of big adventures like this, our current trips tend to be shorter and closer to home. We’ve done a couple of trips to bed and breakfast accommodation within an hours drive of home, and others (sometimes as short as over night) where we’ve driven somewhere and camped for a few nights.

These smaller holidays are more relaxed as we don’t plan out the details in advance. Because we don’t have to travel so far the stress of physically getting to the location is less, so I need less time to recover before I can participate in actual holiday activities. With these types of holidays we can decide what to do on a day to day basis based on how I’m feeling. We make sure we have activities we can do that are less taxing on my system, like audio books to listen to. We also allow for periods of rest between any larger activities and if there’s something that my husband would like to do that is just too much of a physical stress for me, we find a way for him to do it while I do something else.

The key to stress management for me is to pace myself and to allow for flexibility. This helps in every day life as well as in situations that may be out of the ordinary like travel or large social events.

What’s your key stress management tool?

When you live every day with chronic pain and fatigue it can sometimes be difficult to remember what it’s like to feel good, to feel ‘normal’. It’s important though to not focus just on your symptoms but to find at least something each and every day to be grateful for. Something that will make you feel as good as you possibly can given everything you’re living with.

I feel best when…

I feel best when I’m making a difference. When I’m able to find a way in which I can contribute something of meaning to the community. I currently do this by sharing my stories here on the blog and through other social media outlets. By sharing I hope to help others to live simple, sustainable and meaningful lives of their own.

I feel best when I’m able to pace myself well. At the moment that means:

• only working 1-2 hours a day, up to 4 days a week
• finding time each day to do some stretches and yoga
• maintaining a step count of around 5,000 steps a day
• ensuring I get adequate rest throughout the day

I feel best when I’m adequately hydrated. Remembering to drink enough water can be difficult when I’m at my most foggy, but I try hard to remember.

I feel best when I eat a balanced diet. Eating enough nutritious fruit, veg, nuts and meat, mainly eating home cooked meals with fresh produce and avoiding alcohol, dairy and gluten all help to keep me healthy.

I feel best when I have a project to work on that I’m passionate about. At the moment, my passion project is to try and build the sense of community on my street. Although I feel connected to my wider community online, I feel like I don’t really know my neighbours that well.

I feel best when I’m part of a connected community that supports one another and works together towards a simple, sustainable and meaningful lifestyle.

I feel best when I’m surrounded by supportive friends and family.