Intro to a simple, sustainable, meaningful life

I apologise in advance for a long post…

So far this blog has focused a lot on my life since being diagnosed with ME/CFS, Fibromyalgia and Pelvic Congestion Syndrome but I want to broaden it now because I am not my illness and I can’t let it dictate my life.

Before the illnesses began to take over my life I was heavily involved with, and passionate about, living sustainably and looking after the environment. My new business, LiveKen, is focused on helping others to live simple, sustainable and meaningful lives with or without chronic illness.

As such, I’d like to begin my broadening of this blog with a series of posts focused on helping you live a simple, sustainable and meaningful life.

What do we mean by a simple, sustainable and meaningful life?

Simple

The term ‘less is more’ is key to a simple lifestyle, taking the time to identify what is important to them and eliminate the rest.

We need to do a stock take on our lives and our belongings and identify what it is that is most important to us and eliminate the things we don’t need, love or use regularly.

I’ve begun this process myself and I’m slowly working my way through the house identifying the items I never or no longer use. I’m being tough on myself and not holding on to things just because they have sentimental value. Certain sentimental items are staying but most I’m passing on to new homes where they will be used and loved.

I try hard not to schedule too many things into my day so that there is space in there for me to rest and reflect on how my life is going. This allows me to pick up on the negative things before they blow out of proportion so that I can try and solve them.

Using this technique, which I’ve picked up from my friends, I’m beginning to feel happier about where my life is at. I can now see all the positive things I do have. By removing all the clutter and noise and being more mindful about your actions and possessions you too can begin to identify the happiness you already have in your life. Once you do that you can begin to focus on the activities and items that increase that happiness for you.

Sustainable

Sustainability means so many different things to so many different people! When I’m talking about a sustainable lifestyle here, I’m talking about it in two different ways:

1. A sustainable lifestyle is one that can be maintained and continued through all the ups and downs of life. It is not a fad or a one off thing, it is constant and ongoing.
2. A sustainable lifestyle is one that takes into account the effect each action or purchase done as part of that lifestyle has on others and the environment.

I’m not saying that everyone has to be a ‘greenie’ or a ‘hippie’ or whatever other term you’d like to use. These terms have very negative connotations but the reality is this planet is the only one we have and so we all need to do our bit (no matter how small to look after it). I’m also not saying that you can’t spend money on things you like.

A sustainable lifestyle is one where you are financially secure and have all your basic needs taken care of (food, shelter, love, etc).

It is one where you still get to have fun and purchase new and exciting items, but you do so within your means. You avoid bad debt (such as credit cards) and negative relationships so that you aren’t tied down by these.

You also consider whether your actions are having a positive or negative impact on your own life, the life of those around you, and the environment that you live in.

How can you incorporate Sustainability into your lifestyle?

I know that most people have extremely busy lifestyles, and not everyone will want to go all out and do everything in a way that is completely sustainable, so the following tips are some simple and easy ways to incorporate a sustainable mindset into your day to day life.

• Buy Less. When you first think you want something new, consider whether it is a ‘need’ or a ‘want’. If it’s a ‘need’ get it, but if it’s a ‘want’ write it down somewhere and wait at least a week (preferably a month) and see if you still want it. If you still want it then, get it.
• Buy Local. I know there is a lot of hype about organic products being the best thing for you but I believe this can be cost restrictive for some. Instead, consider whenever possible if there is a local option available. Buy fruit and veg from your local farmers market, and if you need new furniture try and find a local designer/maker.
• Be mindful of your budget. Aim to keep spending under what you earn and save money for large purchases or emergencies in the future. If you use credit cards (like we do), pay them off in full monthly. Whenever possible don’t go into debt and don’t pay interest (mortgages are OK though).
• Recycle. Most local Councils offer some sort of kerbside recycling program. Make sure you know how it works and utilise it properly. By doing this you reduce the amount of waste actually going to landfill. Some items shouldn’t go to landfill at all but can’t be recycled through the kerbside program (such as batteries and light globes), again check with your local Council for the most appropriate way to dispose of these items in your area.
• Make it. When you have birthdays, housewarmings and other celebrations try making gifts and cards yourself. If this isn’t possible due to time constraints, buy people experiences instead of stuff.

Meaningful

To live a happy and fulfilled life it is important to participate in activities that are meaningful for you by identifying what is most important to you.

By doing this, and simplifying your lives so that everything you do aligns with at least one of the things that are important to you, you know that each and every thing you do is meaningful and has a purpose.

Using my own life as an example, I have identified 6 key areas that are important to me:

• Family and Friends
• Simplifying
• Mindfulness
• Health
• Continual Learning
• Work – meaningful and purposeful

Since identifying these areas I now assess my actions and activities to check that I’m doing something towards each of these every day. By doing this I know that what I’m doing is meaningful. It is helping me fulfil a need or helping me help others through meaningful and purposeful work.

LiveKen has been set up as a result of me searching for a way to do meaningful and purposeful work while dealing with debilitating chronic illnesses that have interfered with my ability to live the life I had before. Since attempting to live my life by these three principles (simple, sustainable and meaningful) I have begun to feel happy and fulfilled despite my conditions.

They help me maintain a positive outlook on life even through the tough times. Yes, I still have my ups and downs but overall I’m feeling good about life.

By living by these principles, you too can begin to feel happy and content with your life instead of stressed out and negative. Give it a try!

The A-Z Guide to a simple, sustainable and meaningful life

This A-Z guide to living a simple, sustainable and meaningful life has been developed with chronic illness in mind. That is to say, the topics that are covered have been developed from the point of view of someone living with chronic illness but they are relevant to anyone and everyone.

A is for Acceptance

B is for Budget

C is for Community

D is for Delegate

E is for Enough

F is for Faith

G is for Give

H is for Health

I is for Inspire

J is for Joy

K is for Know

L is for Learn

M is for Mindful

N is for Needs

O is for Outdoors

P is for Pace

Q is for Quality

R is for Reflection

S is for Space

T is for Transform

U is for Unplug

V is for Values

W is for Wonder

X is for eXperiment

Y is for Yes

Z is for Zero

Stay Tuned! Throughout November I’ll be expanding on each of these in their own post.

Have you taken steps towards a simple, sustainable and meaningful life?

Let me know if there is anything you’d like me to address in the expansion posts!

Life with chronic illness: Dealing with Emotions

Imagine waking up one day and finding that your whole life has changed. Just like that you couldn’t be who you thought you were.

One day you are happily working full time in a job that makes you feel like you’re making a difference. You’re keeping healthy by visiting the gym most days of the week, walking whenever and where ever you can, and working on your diet (eliminating foods that you react to). It’s important to you that you’re keeping your brain active so, on top of all those other things, you’re studying to improve your skills in a field you want to expand into.

The next day you’re curled up in a ball on the couch, struggling to stay awake and living with pain 24/7. You can no longer do any of the things you could do the day before. Dreams you thought were certain to come true in your future are now uncertain, possibly even gone.

Over time, and with the help of a large team of medical professionals and other support people, you’re able to slowly build up your ability to do some of the physical and mental activities you were able to do before but you’re still not 100%.

This whole process is bound to stir up emotions. Lots of them! Both in yourself and in those who love you and care for you. How do you deal with these emotions?

Life with chronic illness is an emotional rollercoaster and you tend to cycle through the various stages of grief and acceptance throughout your life including denial, anger, fear, and acceptance.

There are several different models outlining the stages of grief and how to deal with them. To find out more about the stages of grief and acceptance specifically related to living with chronic illness, check out this free e-book from Katherine T Owen from Healing CFS/ME and this post from Rev Liz.

Today I don’t want to focus on what the stages are but on how to deal with our emotions in general.

Lately, I’ve been struggling with feelings of anxiety, fear and depression as I try and reconcile my preconceived notions and dreams (those I had before I got sick) with my reality. I had at least a week of feeling overly emotional and struggling with bursting into tears for no apparent reason at times.

Now that I’m starting to feel better, I’d like to share some tips about how to cope with these emotions. These tips are suitable for dealing with any extreme emotions (not just negative ones). This is important because if you are living with ME/CFS or Fibromyalgia any stresses and extreme emotions can impact on your health.

1. Control what you can, accept what you can’t. This is a statement that’s easy to say but hard to implement. It seems pretty clear that you can’t control everything in life. When you live with a chronic illness this is doubly true. You loose control of any predictability in your day to day life in terms of pain and fatigue levels and what you’ll reliably be able to do. You find yourself unable to commit to activities or events, and when you do you may find yourself cancelling them often. What you can control is how you deal with these issues. Accepting that your life needs to be flexible helps you to reduce your stress levels. Determining your baseline and attempting to develop a routine that keeps you close to that baseline most days enables you to slowly build up what you can do.
2. Be Mindful. This links in closely with the tip above. By living a mindful life and trying to stay in the moment, you can focus on the things you can do and be grateful for what you have in life rather than focusing on those things you can’t control.
3. Have someone to talk to. This would preferably be someone outside of your immediate family. Why? The people around you are going through their own struggles learning to accept and adjust to the major changes to their lives that your illness has been responsible for. Having someone outside that you can talk or vent to is important for maintaining mental health. It’s important not to bottle everything up inside until it explodes.
4. Be as active as possible. I’m not saying go running, or even go for a walk around the block. What I am saying is do what you can to keep your body as healthy as possible. This may be as little as a few stretches in bed. I find when I’m able to be more active I’m able to clear my mind more and deal with the emotions that are there.
5. Sit with your emotions. As I’ve already mentioned, it’s important not to bottle up your emotions. I’ve found if I allow myself to cry if I need to and just sit focusing on my breathing and not trying to suppress my feelings it can help me work through them. You could also try journalling to get everything out.

These tips are specifically focused on dealing with the emotions that arise because of chronic illness in your life. They are not the be all and end all, and I’m sure you can add some more of your own, but they are a starting point. We have previously done a post on being mentally strong which also holds some helpful tips.

Do you have any tips of your own that you’d like to share?

How do you cope when your emotions are running high?

On Routine and Pacing

I’ve mentioned many times about trying to maintain some form of routine and pacing as a way of managing my health. Now it’s something I need to refocus on.

I’ve got goals and dreams that I want to achieve within the next few years, and in order to do them I need to be as healthy as I can be. As I’ve previously mentioned, over the last few months I’ve begun adding work back into my life and this has thrown the routine I had set for myself out the window.

Why is it so important for you to have some form of routine?

In order to maintain a lower level of pain and more energy I’ve found the only thing that even works a little is pacing myself. Without routine it’s hard for me to keep my step count consistent and to actually motivate myself on my crash days.

I want to increase my step count back up to where I was before I crashed around Christmas last year (an average step count of 7,000). To do this I’m slowly raising what my minimum step count is for crash days. Over the last 3-4 months I’ve raised my minimum step count from less than 2,000 to 3,500. I’m raising in 500 step intervals every few weeks.

But what about the things that happen in life? You can’t plan everything!

No, you can’t but you can set yourself up so that you have some reserve for the unexpected while still maintaining a general routine on a day to day/week on week basis.

What’s your plan?

At this stage I’m still formulating a new plan for pacing and setting a routine that is flexible enough but I think it will look something like this…

8 – 8:30 am

Do some deep breathing, get up and do a short yoga sun salutation

8:30 – 9:30 am

Shower or bath (pain relief technique) and get dressed, rest if necessary

9:30 – 10 am

Breakfast

10 am – 12 pm

High energy work/housework/appointments with regular rest breaks

(no longer than 1 hour activity at a time without a break)

12 – 1 pm

Lunch

1 – 3 pm

Lower energy work/housework/appointments with regular rest breaks

(no longer than 1 hour activity at a time without a break)

3 – 5 pm

REST (tv or nap depending on energy levels)

5 – 7 pm

Make and eat dinner

7 – 9 pm

TV

9 – 9:30 pm

Pelvic Stretches, prepare for bed

10 pm

Bed

It’ll take me a while to build up to this (especially the getting up and going to bed at a regular time) but it’s important to me to push myself without going past my limitations.

Have you ever tried to set yourself a routine? How successful was it?

I’m not “normal” but I’m grateful

What is ‘normal’?

I don’t think I’ve ever been what someone would classify as ‘normal’ but for the most part I’m happy with who I am.

Ever since I was young I haven’t been normal:

• I don’t cope with late nights and I never really did. Even before the Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) and Fibromyalgia reared their ugly heads in full I couldn’t stay out late without ending up in a lot of pain and struggling for quite a while afterwards.
• I’m allergic to so many things. At school I couldn’t wear half the uniform as I was allergic to the wool it was made from. I can’t eat dairy or gluten without ending up with a major rash. I react to most the medications I’ve tried for pain management.
• I’m a ‘greenie’. I don’t use shampoos, soaps, disposable sanitary items or even toilet paper most the time (more things I’m allergic to). I now make my own laundry liquid, I try to garden (something I’m not that good at yet), and with almost everything I do I’m considering what impact it will have on the environment as well as my health.

The things I’ve listed above are things that I’ve done, or wanted to do, for most of my life. Since getting sick I can add a whole new list of things that are not ‘normal’…

• I’m in pain 24/7. Most nights I hardly sleep due to it (thanks painsomnia).
• My energy levels don’t allow me to do too much in one go. I need to pace myself and only manage a few hours of work a day (that includes writing this blog).
• My social life is even further restricted by what my body allows me to do. I can’t go on long hikes and do many of the activities I participated in before I got sick.
• My life revolves around listening to my body… Something we all should do, but don’t.

Given all the ways I’m not normal, I could be forgiven for getting depressed and blaming the world for what’s wrong with me but I’m not and I don’t.

I’m grateful for everything I’ve been through. All the heartache and pain it causes has helped me to learn to be grateful for what I do have. The illness has helped me realise that I have enough in my life. I might not have everything I want but I have a roof over my head, food to eat, clothes to wear, and friends and family to love and support me.

Without everything I’ve been through I wouldn’t be who I am today. I wouldn’t have had the courage and the strength to step up and make my voice heard. I would still be working a full time job (in a field that I loved), spending all the money we earned, and pushing myself to keep going at a pace that was just unsustainable.

Before I go ill I worked full time, studied full time and exercised daily, all while trying to have an active social life. Since getting sick, I’ve slowed down to a pace where I can focus on the little things and work out what is really important to me. This has allowed me to focus my energy on these things; spending time with those I love (family and friends), making as little impact as I can on the environment, and helping others make a difference in their own lives (work).

I’m not ‘normal’ and I’m grateful for that!

I am who I am because of what I’ve been through and I wouldn’t change it for anything

well, maybe for a life with slightly less pain… but then I wouldn’t be who I am today.

What do you have in your life to be grateful for?

Considering the future…

I’ve been thinking a lot about how things have changed recently and how they’re likely to continue to change over time.

I was planning to move everything over to the blog on my new business website, LiveKen, but have found that not many people have been reading the posts over there and that the audience I’ve built here haven’t seem to have migrated.

So I’ve reconsidered how things have been working and I’ve decided that I’m going to just link the blog here at My Chronic Life Journey to the LiveKen page. That is, this is now the LiveKen/My Chronic Life Journey blog.

I may, over time, move the posts we’ve made over at LiveKen to this site just so we have everything in one place. The LiveKen business site will remain just that, a page for sales and to provide information on our services and products.

These changes may take me a few weeks/months for me to implement (especially as I don’t have a background in IT) but in the meantime I’m going to set myself a new routine that includes regular posts here and regular times working on paid jobs.

At this stage, I’m thinking a regular schedule of 2 posts a week (Tuesday and Thursday).

I’m hoping this process will help me further simplify my routine and establish better balance and quality of life.

Crashes and Flares: Signs and triggers

It’s been a while since I’ve done a post, either here or over at LiveKen, and I’ve decided it’s time I get myself back on track.

Why haven’t I been posting?

I just haven’t had the energy or the time to do it.

Over the last few months, I’ve slowly increased the amount of paid work I’m doing from nothing, to aiming for at least 8 hours a week. This is a big deal for me as I haven’t been able to work at all for over 2 years now!

This has been great for my self esteem, but it’s had a major impact on my ability to pace and the routines I had set up for myself to cope with these illnesses. In fact, I feel like I’m starting from scratch again in setting myself a routine that works.

For at least the last 2 weeks I’ve had almost no energy and a very high level of brain fog. Thankfully, my pain is remaining fairly constant although slightly higher than what I had managed to get it stable at. I would say that at this point I’m about at the same point in my health journey as I was 12 months ago. In that time I’ve had a major crash (around Christmas last year) and have slowly built myself back up. I have no idea why I crashed then and I am worried about the same thing happening again this year. The whole thing has me thinking about what causes these crashes.

Signs I’m overdoing it

Last night, as I lay in bed struggling to sleep due to pain and extreme fatigue (contradictory I know), I spent a lot of time thinking about how I can tell when I’ve done too much. The key signs I’ve identified are:

• Increase in fatigue. When I have done too much I fall back into needing to sleep during the day, something which I haven’t had to do regularly for months. I end up sleeping most the morning or falling asleep on the couch in the afternoon.
• Increased brain fog. My ability to focus, find the right words, and actually contribute to normal life goes out the window if I’ve done to much. This is usually one of the first signs and usually my husband picks it up before I do because of the brain fog.
• Sore throat and headaches. When I overdo it my throat feels like it’s burning and very dry. My headaches (which I get daily anyway) increase to a point that I literally can’t do anything. It generally goes from a constant tightness and ache to sharp stabbing pains and throbbing.
• Inability to sleep. Even though I become even more fatigued, my ability to sleep at night goes out the window when I’ve done too much. This is what happened to me last night. Unfortunately, lack of sleep can increase my symptoms so it becomes a vicious circle unless I somehow manage to get more sleep.
• Increased pain. Thankfully, this seems to happen less often now days but overdoing it can cause an extreme flare up of my pain levels.

Potential Triggers

Flares and crashes lead to a lot of the symptoms above but they don’t always occur from overdoing it. As I stated above, I had a major crash just before Christmas last year (from which I’m still recovering) which doesn’t seem to be related to overdoing it. Here are the triggers I’ve noticed seem to affect me:

• Too many steps. If I don’t maintain my step count I notice an increase in symptoms. I’m working to very slowly increase my step count. Before Christmas I was up to 7,000 steps average a day. Right now my upper limit (avoiding crashes and flares) is 5,000 steps and on bad crash days I aim for at least 3,000. This is something I’ve built up to slowly from 1,500 steps at Christmas. I’m aiming to get back to 7,000 steps average over the next few months.
• Sensory overload. Attending events where there are lots of people, bright lights or lots of noise tend to cause an almost immediate increase in brain fog.
• Weather changes. Hot weather seems to increase fatigue and brain fog and cold weather seems to increase pain levels.

I’m sure there are many others, but there the ones my brain is letting me come up with right now…

What are your signs and triggers?