Power, energy, and other random thoughts…

Set up for reading by the fire, with a nice cup of tea and Pepper (cat) for company.

It’s been over a week since I last posted. Between my major projects (Foggy Frog book and AAEE 2016 Conference) and the weather here it’s been difficult to find time to write here.

Yesterday, just as I was about to write my post, the power went out at home. It was out most the day so instead of working (everything I’ve got to do at the moment is online) I spent the day reading Harry Potter and playing with the cats.

It was interesting working out the best ways to stay warm when the heater didn’t have it’s fan (it was warm right in front of it but the heat didn’t get very far) and I didn’t have electricity to make the gas hot water work for a bath or the kettle work for tea.

In the end, I used the stove (gas and I could light it with a match) to boil water for tea and just sat as close as I could to the fire most the day with the cats for company.

Anyway, on to what I was planning to talk about yesterday…

Testosterone – an Update

It’s been over 3 months since I started on Testosterone treatment for pain and energy management.

Using the syringe to measure and apply the cream to my skin
Using the syringe to measure and apply the cream to my skin

The first few months I didn’t really notice much difference. There was a good reason for that though as, although we started at the usual dose for women and doubled it at the end of each month, I didn’t seem to be absorbing much of it. The free levels in my blood only went up by 0.3 over the first two months from 0.4 to 0.7 (normal range for women is 1.5 to 8 – I don’t remember what the measurement units are sorry)!

Rubbing the cream in to make sure as much as possible gets absorbed
Rubbing the cream in to make sure as much as possible gets absorbed

However, once we doubled the dose again, for a total of 1 mL daily, my free testosterone levels in my blood have finally reached low-mid normal range (around 2). I’m beginning to notice some changes in my base levels of pain and a decrease in the number and intensity of the crashes I have. Nothing really worth claiming as a significant improvement yet, but even the change in crash frequency has allowed me to get a lot more done recently.

Foggy Frog and the Pain Gang Book Launch

We’ve set a date for the official book launch! There will be a live event on Saturday 24 September 2016 at Burnside Library, followed by a series of online events during Invisible Illness Awareness Week (September 26 – October 2 2016). Register for the live event here and stay tuned for more details of the online events.

If you have your own blog or podcast and would be interested in being a part of the Invisible Illness Awareness Week events let me know in the comments or contact me below.

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

Separating me from M.E.

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?

Taking Stock and Share Your World Week 26

Share Your World

We’re halfway through the year, so I thought I’d do another Taking Stock as well as answering the Share Your World questions. In fact, given that the 4th question in Share Your World is a ‘Currently List’, they fit together well.

Taking Stock – June 2016

The concept is really simple, a snapshot of where you are, who you are spending time with, how you are feeling and much more. To create it just add a sentence or two next to each category below…

You can check out my March Taking Stock here.

Making : The print-ready files for the Foggy Frog and the Pain Gang picture book. We’re finally close to publishing and launching the book!
Cooking : Sourdough bread. I’m baking regularly, at least once a week.
Drinking : Water.
Reading: Harry Potter and the Philosopher’s Stone (illustrated edition).

Set up for reading by the fire, with a nice cup of tea and Pepper (cat) for company.
Set up for reading by the fire, with a nice cup of tea and Pepper (cat) for company.

Wanting: A pain-free day… not something I can see happening soon, but I’d love one!
Looking: At different book covers to finalise the Foggy Frog cover design.
Playing: Board and card games with E.
Deciding: What my plans are for the next financial year (today is the last day of the financial year here in Australia).
Wishing: I had a clearer head so I could focus better.
Enjoying: The nice weather today (Tuesday – I wrote this post early this week). The sun’s out and it’s not too cold.
Waiting: For the results of the Foggy Frog cover design. Kickstarter backers have the chance to vote on 3 different options. Taking their comments into consideration I’ll be creating the final cover.
Liking: Freshly squeezed orange juice and freshly baked bread.2016-06-13 10.55.50
Wondering: When I should officially launch the book.
Loving: Spending time with family and friends.
Pondering: What to do for dinner tonight.
Considering: Whether to make myself a cup of tea.
Buying: ISBN’s for the Foggy Frog and the Pain Gang picture book.
Watching: Some new (to me) UK show on ABC iView, Breathless. It’s not really my sort of show so far, but I’m giving it at least this episode before I decide.
Hoping:
 E has time to play another game with me this weekend.
Marvelling: At how fast my friend’s children are growing up.
Cringing: At having to repeatedly read the same line before I actually make sense of what I’m reading.
Needing: A nap. I’m reaching my limits for today.
Questioning: Who to actually vote for in the elections. I’m not really impressed with any of the politicians.
Smelling: Lollies. I needed some sugar to keep going today.
Wearing: Trackies and a long sleeved top.
Following: What’s going on in the election campaign.
Noticing: The cats curled up in front of the fire.
Knowing: My friend Jan will be coming to visit soon.:-)
Thinking: About what to make for dinner tonight.
Admiring: the sun shining off the plants in the front garden.
Sorting: My sewing/spare room. It’s a bit of a mess again so I need to rearrange and clear again!
Getting: more and more excited about the progress with the Foggy Frog book (you’re probably seeing a theme here).
Bookmarking: The Facebook Page I’ve set up for the Foggy Frog and the Pain Gang picture book.
Coveting: Some sort of baking mat so that I can avoid using so much alfoil when we’re cooking.
Disliking: How my joints ache in this cold weather.
Opening: The mail from yesterday.
Giggling: At some of the silly promotional brochures being sent out by the political parties.
Feeling: Flustered and achey.
Snacking: Nuts and dried fruit.
Helping: Plan the AAEE 2016 Biennial Conference.
Hearing: The postie going by.

Share Your World – Week 26

What’s your most memorable (good or bad) airplane flight?

I haven’t had many flights and none have been that memorable. If I had to choose one it’s a toss up between my first ever flight, a trip to the Gold Coast for a St John Cadets National First Aid Competition when I was about 15, and my first overseas trip, New Zealand, with E about 10 years ago.

How many bones, if any, have you broken?

None as an adult, as a child I broke my elbow.

If you had your own talk show, who would your first three guests be? (guest can be dead, alive, famous or someone you just know)

My show would align with my blog and business, focusing on living a simple, sustainable and meaningful life with or without a chronic illness. I’d probably choose the following to be my first three guests:

  1. David Attenborough. I’ve always looked up to him and what he has been able to achieve in his life.
  2.  Jennifer Brea. She’s been able to do so much even though she lives with severe Myalgic Encephalomyelitis.
  3. My mum. She’s always had a good perspective on life.

Make a Currently List: What are you reading, watching, listening to, eating, needing, wanting, and missing right now?

See above

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up? 

I’m grateful for acupuncture which takes away most of my pain (for a little while at least).

In the next week, I’m looking forward to just seeing what happens. I don’t have many set plans yet for the week!

Are you feeling better? You’re looking good!

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?

Share Your World Week 25

Share Your World

Winter is definitely here in Adelaide now and I’ve been trying to stay warm inside by the fire the last few days. It’s been nice to spend time snuggled with the cats in front of the fire.

Share Your World – Week 25

How many languages do you you speak?

Only English really. I can count to ten in Japanese and Italian (the 2 languages we did at school) and I know a few other words but I don’t speak any other languages proficiently.

What are some words that just make you smile?

Kitty, baby, happiness, yummy…

If you were the original architect of one existing building, which building would you select?

I’d probably go with an eco-house… maybe even a hobbit-hole style house. I love watching grand designs and seeing all the different ideas but I don’t think I could choose just one.

Would you rather have telepathy or telekinesis?  (Telepathy is the communication using your brain waves, telekinesis is channeling the energy onto physical objects to cause substantial, observable physical changes.)

Telepathy… E is always joking that I can read his mind so he doesn’t need to tell me things, it would be great to actually be able to:-) Also, when he leaves the shopping list at home, I could just send it to him easily.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up? 

In the last week I’m grateful for E’s help in finally getting the cover designs ready to be voted on. This brings us so much closer to having the book finished and available.

I’m looking forward to seeing our friends this weekend and acupuncture on Tuesday (my pain levels have been really high the last week or so)!

Working with Chronic Illness – My experience Part 2

2016-02-28 14.11.28

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?

Share Your World Week 24

Share Your World

Another week has gone by and we’re back for another round of Share You World.  I’ll apologise up front if my answers don’t make any sense but I’m writing this after a busy morning out and I feel like there’s a giant cloud around my head at the moment. Anyway, here we go…

Share Your World – Week 24

What is the most fun thing you did in school?

I really enjoyed participating in the school musicals and the inter-school Choir events throughout school.

What is your favorite type of dog?  (can be anything from a specific breed, a stuffed animal or character in a movie)

Another difficult one for me as I don’t necessarily have a favourite type of dog but I do really want a beagle so I guess that will be my choice today.:-)

You are invited to a party that will be attended by many fascinating people you never met.  Would you attend this party if you were to go by yourself?

It would depend on the situation. If there was a reason for meeting the fascinating people (they’re relevant to my field of work or to something I’m interested in) then yes I’d go. If not, I’d probably not go as I like to conserve my energy for things that are important to me (like spending time with my family and friends) or that fit in well with my values.

Complete this sentence:  Never In My Life Have I…. jumped out of a plane… I almost did once when E and I were on holidays in New Zealand many years ago but (luckily, I think… I was very very nervous about it) the weather closed in and they had to cancel the jump.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up? 

I’m grateful for finally making it to one of the in-person catch ups of the local ME/CFS/Fibromyalgia support group I’m part of on Facebook.

This week I’m looking forward to taking some time to step back and reflect on the last year and begin planning what I’d like to do in the next financial year.