Maintaining Mental Functioning with Chronic Illness

If you read my posts last week you’d know that lately I’ve been getting back into reading after almost a year of not being able to physically read a book.

I’m reading both fiction and non-fiction and at the moment the main focus of my non-fiction books is my health. I did a review last week of one of the books I read, The Complete Fibromyalgia Health, Diet Guide and Cookbook, and I’m currently reading a book that has been called ‘a much-needed bible of information’ (Professor Warren P. Tate) for people living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management by Dr Rosamund Vallings.

Image from Goodreads

I will write a review of Chronic Fatigue Syndrome M.E. once I have finished reading it but today I want to talk about how these books are affecting my decision making processes.

Both of these books have got me thinking about how I’m managing my conditions both physically and mentally. Although there is a lot of overlap in the recommendations in each book, there are some major differences as well. The main one I have come across so far is in regards to exercise and diet recommendations. That is not the topic of todays discussion so I’ll expand more on that later.

Managing the mental aspect of these conditions (the brain fog, memory issues and mental health impacts such as secondary depression) can be especially difficult when you are suffering from multiple conditions are unsure which illness/condition is causing each symptom. Dr Vallings advocates for the saying ‘Use it or lose it’ for both physical and mental activities but puts a proviso on how much you use it at one time to take into account pacing and minimising symptoms.

The ‘Use it or lose it’ attitude is probably a good one to have but pacing is the key for ME/CFS. For example, this post has taken me an hour to write but I have had to break that into two blocks with a break in between as my current activity limit I’m working to is 30 minutes of computer work at a time.

I’m yet to read Dr Vallings chapter on depression so I can’t comment on how she recommends minimising the impact of this additional condition, but I can say that she believes that everyone suffering from a chronic condition such as ME/CFS is likely to experience depression at one point or another.

Both books advocate a positive outlook on life, recommending treatments such as Cognitive Behavioural Therapy to help us be able to turn negative thoughts into positive ones. The psychologist I saw earlier in my illness believed I was doing well at maintaining a positive outlook at that stage of the illness so we didn’t use Cognitive Behavioural Therapy, but he did say that it was likely if this illness continues for a longer period of time (which it appears to be doing) I may need help in the future.

My current goals that are focussed on mainitaing my mental functioning are as follows:

• Daily meditation as part of my relaxation time to help promote a calm and positive outlook on life.
• Daily reading (at least 30 minutes) that is broken into maximum 30 minute blocks. As previously discussed I aim to use reading for both fun/relaxation and educational purposes, encouraging my mind to begin to think about being strategic and creative again (both skills I need if I want to keep working in my current role when I return to work).
• Daily writing, either here on my blog or in my diary (which I haven’t used much since starting this blog).
• Daily drawing to encourage creativity.

I don’t always manage to fit all of these in but I am using them as a guideline for daily life. I really need to get back into some sort of routine and work out exactly what my limits are so I can return to work in some capacity.

These tasks are all paced and, combined with my physical goals/guidelines, form a basis for a flexible routine that reduces stress and doesn’t increase symptoms or lead to crashes.

Maintaining mental functioning when dealing with a chronic illness can seem like an overwhelming task (I know I felt that way in the early days of my illness) but with a little planning and consideration it is possible to find ways that do not impact negatively on your health. If you are severely ill, this may mean listening to an audio book or having a crossword/puzzle next to your bed that you do a single move at a time. You may need to incorporate more rest but spending even a minute or two doing something that encourages you to think, remember or be creative would be a great start at maintaining your mental functioning.

Do you have activities you do daily or weekly that help you to maintain or increase your mental functioning (thinking strategically or creatively)?

What mental functions do you struggle with the most as a result of your illness?

Physical Friday: The Complete Fibromyalgia Health, Diet Guide & Cookbook – Book review

(c) Megan S, December 2013

Today’s Physical Friday post is going to be different to what I’ve done so far. I’ve just finished reading The Complete Fibromyalgia Health, Diet Guide & Cookbook by Dr Louise McCrindle and Dr Alison Bested so I thought I’d provide a review for those of you who might be interested in this book.

Image taken from Goodreads (click to view original)

The Complete Fibromyalgia Health, Diet Guide & Cookbook aims to provide the reader with an overview of what Fibromyalgia is, how it affects those suffering it and how a change in diet can help minimise the symptoms through a focus on increasing the micronutrients for managing Fibromyalgia and reducing inflamatory foods.

Overall, the book is easy to read and divided into self-explanatory parts so that you can easily absorb the information in smaller portions. The authors advocate an approach to managing Fibromyalgia that takes into account both Western and Eastern medicines and philosophies. There is a strong focus on managing Fibromyalgia through diet, with half the book focused on this aspect, however they acknowledge the need to use other techniques as well.

The overall approach recommended by the authors is the ‘SEEDS of Health Program’, that looks at Sleep, Energy, Exercise, Environment, Diet, and Support as the key factors that influence Fibromyalgia symptoms. A lot of the information covered by the book I found to be a repeat of what I had already learnt through my online research and discussions with my doctors, however I did find it useful to confirm my approach.

I would not recommend attempting to read this book in large blocks, especially if you are suffering from Fibromyalgia. Although, as I’ve already stated, the information is laid out in an easy to follow and understand way, I did find that I became overwhelmed a few times and had to put the book down for a few days before reattempting to read a few of the chapters. Especially when it came to the diet section and the tables of foods to avoid (the inflamatory foods) and the anti-inflamatory foods which should be increased in your diet.

I like the way the book provides a four week menu plan with associated shopping lists and recipes, but again I found the long lists to be a little overwhelming all at one time. The authors do acknowledge this and recommend starting with modifying one meal for a week (for example breakfast) while continuing your normal diet and then slowly increasing until all your meals follow the diet.

Although I personally wouldn’t follow the menu plan precisely, I will most likely incorporate some of the recipes and the ideas behind this diet into my own.

This book is great for someone who is newly diagnosed and wants to have a better understanding of what is going on and what they can try in terms of management. Just remember to break your reading sessions into short blocks as, although easy to digest, the amount of information can be overwhelming for someone suffering from brain fog and fatigue.

Have you read this book?

Did you like this review? What details would you like in future book reviews?

Wisdom Wednesday: Gratitude Jar Update

(c) Megan S, December 2013

If you are a regular reader you’d be aware that at the beginning of this year I started a Gratitude Jar.

To recap, the purpose of this jar is to remind me at the end of the year of all the little things I’ve achieved or been grateful for during the year. Each night I’m meant to write down what I’m grateful for that day and add it to the jar with the goal of emptying the jar at the end of the year (or beginning of next year) to review.

So… how has this been working for me?

I think I’ve finally settled down into a good routine, but it has taken almost 5 months to work that out.

To begin with my jar was in the study next to my sewing machine. I didn’t always remember to go and write something down in the evenings and I was getting to the point when I was having to remember back a week or more to record things for each day.

I’ve solved that problem by moving the jar and all the necessary supplies to record my gratitude to my bedside table.

My gratitude corner (bedside table)

By doing this I see it there every night and remember to think about the day that’s just been and what I was grateful for.

You’ll notice in the picture that I have post-it notes, pens and scissors next to the bed. The post-it notes are so large that I can record 3 or 4 days at least on each one so the scissors let me cut each day off as I go.

To remind me where I’m up to, and so I can be sure I haven’t missed a day, I write the next date at the top of the post-it note as I cut off that night’s post.

I’ve also struggled with some days working out what I’m actually grateful for! I didn’t really expect this, but when some of your days are spent with pretty much zero energy and spending half (if not more) of the day in the bathroom throwing up it does happen. Those days I tend to record as ‘Rest Day’ and if there was one thing I really enjoyed (like being able to lie outside in the sun or cuddling the kitty cats) I’ll add that as well. This way there is no days that I have not been grateful for anything.

Have you set up something similar for yourself this year? If so, how are you going?

What are you grateful for on your worst days?

Mental Monday: Reading for relaxation and education

I hope everyone has enjoyed their Easter long weekend and that those of you who are having an extra long weekend in Australia continue to enjoy it!

I know that I am enjoying having E home to keep me company for the week. On top of family Easter events (last one is today), we’ve managed to play some new board games, build some Lego, read some more of our books, go for a short bike ride together and just relax and enjoy ourselves.

I’m loving the fact I’m now able to read again (more than 3 lines at a time) but I’m also finding that it’s a new area in which I need to learn to pace myself…

I love to read and when I was younger I would read multiple books a day. Many nights when mum said lights out I’d go under my blanket with my bedside lamp and keep reading (I even managed to burn a ring in the cover one night because the lamp got too hot). Many, many times I would end up cross-eyed from reading for too long.

From all this you can probably tell that when I get into a good book I struggle to put it down.

Reading is a wonderful escape path. When you’re in a good book you can forget about what’s happening in your real life. If I’m lucky I can block out my pain almost completely!

My goal from now on is to try and find a better balance. Like with drawing I’m going to aim for at least 30 minutes a day but I’m going to try and limit it to 30 minute blocks as well so that I don’t over do it like I’ve done a few times in the last week and many times in the past!

I’m aiming to have one ‘for fun’ book and one ‘education/information’ book on the go at all times. Right now I’ve got a couple of books on Fibromyalgia and ME/cfs from the library and a fun book off our bookshelf that I’m trying to read.

I may review some of these books here, especially the education ones if their relevant. I’ve also joined Goodreads and joined the Spoonie reading group on there so I’ll probably review most of my books there.

Do you like to read?

Do you read for fun or for information?

Do you have any book recommendations?

Happy Holidays! Enjoy the long weekend

It’s Good Friday today. The start of the Easter long weekend.

Here in Australia, many people are taking an extra EXTRA long weekend because ANZAC day is the following Friday so by taking 3 days off work you can have a 10 day weekend.

So if you’re doing this and having an extra long weekend, enjoy it!

What ever is happening for you this weekend, have fun. Spend time with family and/or friends, do something you enjoy and find some time to relax.

I plan to do all of these things. I’ll be spending time with family, enjoying some time outside, drawing, reading, and relaxing.

Do you celebrate Easter?

What are your plans for this weekend?

Wisdom Wednesday: Benefits of Drawing

(c) Megan S, December 2013

I never really felt I was any good at drawing, maybe because I have a slight perfectionist streak which made me throw away anything that didn’t exactly resemble what I was picturing in my head. Since early high school (when I got to select my own classes and dropped Art) I hadn’t really done much drawing at all.

That all changed early this year when I realised I couldn’t afford the price of the illustrator I wanted to illustrate the Foggy Frog and the Pain Gang picture book. My husband suggested I try doing the illustrations myself, and Lynn (the illustrator I had been working with) encouraged me by saying I might be surprised by what I can achieve.

So for the past few months I’ve been drawing, and I’ve got to say I’m actually really enjoying it!

I may not be the best at it but I seem to have gotten over my perfectionist tendancies, 0r at least I no longer have the energy necessary to worry over it, and I’ve recognised some of the other benefits drawing has to offer me.

1. Distraction: When focused on drawing I can distract my mind from what is going on in my body. Although the pain doesn’t go away completely I find I can block most of it out to focus on what I’m doing.
   
2. Relaxation: I find that if I’m able to focus my mind purely on my drawing I’m able to relax muscles that generally stay tensed all the time. This helps again with reducing pain and can allow me to rest easier after drawing.
   
3. Self-confidence: I’m finding the more I’m drawing the better my drawings are getting. This has helped me feel more confident in my ability to achieve this incredible goal of illustrating the Foggy Frog and the Pain Gang picture book myself. I also feel more confident in undertaking other tasks I felt were too difficult or out of reach for me.

These are three of the benefits I’ve found from taking up drawing. I’m setting myself a goal to try and draw for at least 30 minutes a day during the week. This is for the benefits above and also in the hope of completing the picture book ahead of schedule.

Let’s finish this post off with one of the initial sketches for the Foggy Frog picture book. Those of you who are backers of the project have already seen this one.

* All pictures in this post are copyright Megan S., 2013-2014

Have you taken up a new hobby since falling ill?

What are the benefits you’ve found from taking up this hobby?

 

 

Foggy Frog Kickstarter Postmortem

As promised last week, today I’m going to share with you some of the behind the scenes data from the Foggy Frog and the Pain Gang Kickstarter campaign.

By sharing this information I’m hoping to help others who may be interested in running their own campaign and to thank those who had a big impact on the success of the Foggy Frog campaign.

How it all began…

After having searched unsuccessfully for children’s books related to Fibromyalgia, ME/cfs and Pelvic Congestions Syndrome, and recieved such positive feedback on my Foggy Frog and the Pain Gang poetry and short stories, I realised there was an opportunity for these characters to fill the gap that I’d found.

I spent a few months refining the Foggy Frog and the Pain Gang story and began discussing the possibility of turning it into a picture book with some of my fellow bloggers and Twitter friends.

Once deciding to make the book, I researched the costs associated and realised I couldn’t afford to do this by myself, thus the decision to crowd fund the project and make this a campaign by the community for the community. I spent a few months working on the Kickstarter campaign page and building up a group of dedicated supporters and on Sunday, 2 March 2014, the Foggy Frog and the Pain Gang Kickstarter campaign was launched!

Just before I hit the launch button…

27 days later we had successfully raised $7,529 to get the first run of the Foggy Frog and the Pain Gang picture book published and distributed around the world!

Some statistics…

The Money

As can be seen in the Funding progress graph above, we recieved 30% of our target within the first 7 days and just over 41% in the last 2 days!

Using Kicktraq to monitor our statistics it was possible to see a breakdown of pledges, backers, and comments on the main page per day.

These graphs show that we had an average of 4 backers per day, pledging an average of $269 per day, however their was an obvious increase in the number of backers during the first week and an increase in the amount being pledged during the last few days.

Not many people commented on the campaign and the majority of comments were during the last few days.

The Backers

Using bitly.com I was able to track how many people accessed the page and where these people were coming from.

Overall, 840 people have viewed the campaign page, this includes the previews I gave to the rest of my support team (15 views total) and the people who have viewed the page since the campaign closed (28 views total).

The majority of these views came from Facebook (320 views total), unknown sources such as direct emails, or typing in the address (238 views total), and Twitter (205 views total).

Kickstarter provides project creators with a unique dashboard where they can see specific data on those that back their campaigns.

Of all of those who viewed the site, 550 watched the video with 56.73% of them watching it through to the end.

 

Officially the campaign had 111 backers, however once you include those who gave me cash that was added through my family members we actually had 115 backers.

As can be seen from the chart and table above, the majority of backers came to the site directly from emails or typing in the address or through Facebook. However, I must note that the dashboard isn’t completely accurate as some people may come through a particular route (e.g. Facebook) but then have a look around the Kickstarter site before returning to the campaign page and donating. These people would have been recorded as coming through one of the Kickstarter routes shown in green in the table above.

Two thirds of the backers were people I knew in person, with a third being strangers or people I only knew a little through the internet.

It’s also interesting to note that the average pledge amount was $67.83.

I’d like to take this opportunity to thank all of those who wrote articles about the campaign, you can check these articles out in the Media Room. Each of you brought traffic through to the site and helped to raise awareness of this important campaign.

The Reward Levels

The Foggy Frog and the Pain Gang Kickstarter campaign started with 7 and ended with 9 reward levels. Only one of these reward levels recieved no backers ($90 level).

As can be seen in the graph above, the $25 reward level was the most popular. This was the level at which people got a physical copy of the book as part of the reward. It also included everything from the levels below it.

Surprisingly, the second most popular level was No Reward, closely followed by the $15 reward level.

The $100 reward level proved to be the one that produced the most money for the campaign with 27% of the money raised coming from the $100 reward level.

Wrapping Up

The Foggy Frog and the Pain Gang Kickstarter campaign may be over in terms of raising the necessary money, but for me the hardest part is just beginning.

Thank you to each and every one of the 115 people who have shown their support for me by pledging money towards the campaign, and to those of you who were unable to pledge money but helped by spreading the word through Facebook and Twitter. Without all of you we would not be where we are today.

I am now working on the illustrations for the book and will then be getting revised quotes for publishing and printing this unique and much needed book.

Those of you who are backers of the campaign will continue to recieve regular updates from me which will include illustrations as they are completed. I will also keep the rest of you updated with occassional posts here on my blog about where we are at and how you can get involved if you wanted to.

I’m hoping this post will be a help to those of you who are currently undertaking your own fund raising or who are considering to do so in the future.

Please check out the following projects if you are interested in supporting more material like Foggy Frog and the Pain Gang to get published and available to the world.

My Invisible Life – a crowd funding campaign to provide funds for the ongoing maintenance of a wonderful story sharing website for those with invisible illnesses.

Why Mommy Hurts – a wonderful picture book for young children who have a parent suffering from Fibromyalgia or other Chronic Pain conditions.

I’d love to hear about your experiences with crowd funding or other fundraising activities.

How would you promote the Foggy Frog and the Pain Gang picture book to the community?

Why do you believe stories like this need to be shared?

 

Physical Friday: A Beginners Guide to Exercising with Fibromyalgia & ME/CFS

(c) Megan S, December 2013

For the past month, on top of working on the Foggy Frog and the Pain Gang Kickstarter campaign, I’ve been working with an Exercise Physiologist.

The goal of working with the exercise physiologist is to work out what exercise program I can maintain that will over time improve my physical health.

There are 3 key areas to focus on when working on physical health:

• Stength
• Cardio
• Flexibility

Today I’m going to provide a brief overview of these three areas and provide my current exercise plan as an example of what can be done.

It is important to remember that everyone is at different levels of health and what works for me may not be right for you, so before you decide to try something new please check with your doctor or health care professional! Especially given that most of us are suffering from various illnesses that do affect our ability to do what ‘normal’ healthy people can do.

Strength

Strength (or resistance) training is an important part of maintaining overall health. This form of training focuses on maintaining and/or building muscle which is important as it helps protect your joints from injury, improves your mobility, and can be beneficial in managing pain and improving your overall sense of wellbeing.

When beginning a strength training program it is important to understand where you are starting from and not to push too hard to begin with.

For example, people who are currently bed bound may begin with gentle range of motion movements and may actually need someone else to help move their body. While someone who is healthy and fit may be lifting extremely heavy weights to build and maintain their big muscles in their legs, back and arms.

Remember to start from your current position.

For me, this meant starting with some basic body weight exercises. I am not bed ridden but it has been at least a year since I’ve done any heavy lifting or weights programs.

What do I mean by basic body weight exercises?

When I first went to see the exercise physiologist at the beginning of March I was prescribed 4 exercises to do. These exercises focused on the main muscle groups (the quads, glutes, and shoulder and arm muscles).

My Strength Program

Sit to Stands (quad workout)

Sit on the edge of a chair, feet flat on the floor.

Stand upright, extending knees fully and engaging glutes.

Should feel this exercise working your leg muscles.

Start with a surface that is high, as this will be easier.

 

Wall Pushups

With arms slightly wider than shoulder width apart, and feet at a comfortable distance from a wall, gently lean body towards the wall.

Relax shoulders, and avoid chin moving towards the wall.

Push back out to original position, making sure not to lock elbows.

 

Bridge

Lying on your back with your knees bent, bring your belly button towards your spine to keep your core activated.

Slowly raise your bottom from the floor.

Should feel this working your glutes.

Remember to relax your upper body (neck and shoulders0

 

Arm Slide

**I was originally asked to do these standing against a wall, but my neck and shoulder muscles are so tight that I struggled to do the exercises. It has been modified so I now do them lying on the ground with knees bent.

Stand against a wall (with spine neutral)**, raising your arms to a comfortable height with your elbows bent to 90º.

Gently squeeze should blades together and down (arms will move down the wall). Only go to a pain free range of motion.

 

For the first week I was only to do one set of 5 repetitions for each exercises twice that week. If I didn’t have more pain/less energy/crashes from doing that I was to up it to 2 sets of the 5 repetitions for each exercise twice a week.

After doing this for 3 weeks, I have now been told I can add an extra day. So I will be doing 2 sets of 5 repetitions three times a week (Monday, Wednesday and Friday). With the modified arm slide, I hold the initial “arms up with elbows bent” position for 10 seconds before doing my 5 repetitions. This is to help stretch the necessary muscles to make it possible for me to do the exercise against a wall in the future.

Cardio

Cardio exercise is important to protect against cardiovascular disease. The exercises we do make sure our heart muscle is working hard and our blood is pumping around our body.

As with the strength exercises it’s important to know where you are at and start at a point that is not going to cause crashes.

For one person this may be getting out of bed and walking to the bathroom, for another it might be running 12kms.

There are many different forms of cardio exercise but for those of us with chronic illnesses the best ones to try are walking, riding a bike, or swimming.

These activities are low intensity and are less likely to damage our joints. This is important because we are likely to have less muscle protecting them.

My Cardio Program

Before seeing the exercise physiologist I had been trying to increase my cardio with a form of graded exercise therapy where I was increasing my exercise each week by 10%. I was walking or riding my bike daily (mainly walking), and occasionally going swimming. I had built my walks up to 30 minutes BUT was needing to rest for about 2 hours after each walk.

The exercise physiologist suggested cutting my walks back to 20 minutes maximum which seems to have helped with the length of rest I need after each session.

At the moment I’m not riding my bike and only very very occasionally going swimming because I want to focus on my walking and trying to increase back to 30 minutes slowly over time, with the exercise physiologists supervision. I aim for a 20 minute walk daily unless I have a day of appointments (where I walk a lot between them) or I’m participating in an outing or activity that will involve a reasonable amount of walking, riding or swimming.

Flexibility

Maintaining flexibility is extremely important for those of us who suffer from chronic pain conditions. Keeping the muscles moving and stretching them can be extremely beneficial for pain management.

The most basic form of flexibility exercises are stretches. Again, if bed ridden you may have someone else move your body and stretch it for you.

A more advanced form of increasing flexibility is to participate in yoga, pilates or tai chi. These exercises work on stretching and strengthening your muscles in a gentle way and also provide mental health benefits from the meditation like format of sessions.

My Flexibility Program

Very early on in this illness (after the first few months of complete crash) I began to introduce exercise into my life in the form of yoga. I started with just gentle stretches and moved slowly into more yoga poses.

At this stage I’m up to about 12 minutes of yoga a day. I do this either as a single session in the morning or as a series of stretching sessions throughout the day.

On the days I do my strength exercises I do them as a circuit with my yoga poses in between to stretch the muscles that I’m using. I’ve found that this helps reduce the number and length of rests I need during the exercise program.

So that provides a basic overview of the 3 areas of physical health and provides a few examples of how someone with a chronic illness (i.e. me) has found a program that works for them.

Do you exercise regularly?

What helps you most in maintaining your health through physical movement?

Life with Foggy Frog and the Pain Gang: Father Eddie Tatro’s Story

Father Eddie Tatro, from Bishop Eddie Tatro’s Study, has been a wonderful friend and fellow blogger. He has been reading all the true stories I have shared through the Life with Foggy Frog and the Pain Gang series and has offered to share his story as the first male story in the series. Below is Eddie’s story in his own words.

Eddie’s Story

I had no real physical pain issues in my life until way after university and seminary.  However, everyone feels pain on some level, whether it be emotional or physical, however those that are “normal” the pain passes.  Those of us who live with Chronic Pain Syndrome and Fibromyalgia deal with it at very high levels and on a daily basis.

Pain does change a person, and today my dear Readers I’m going to tell you how it has changed me.

First the back story on how I came to have chronic pain/fibromyalgia.  It was in February of 2011, I was in for a heart procedure at what was supposed to be a world class hospital.  Well instead of checking if I had any type of blood clot prior to surgery they went ahead and did the procedure and I stroked out on the table due to a small blood clot.  It was a very minor stroke but a stroke none the less.

From that stroke I had very mild paralysis on my left side of my body, which I did eventually overcome through physical therapy.  However I developed so much pain from it and still have it; the neurologist who followed me in the hospital came to the conclusion that the stroke did something to the pain receptors and nerves in my brain; and that I would be like this for the rest of my life.

That is the back story…
Pain has tremendously changed me, and in some ways for the better.  Yes I’ve always been a “sensitive” man, but I always chalk that up to my incredibly large heart, but I began to feel things much deeper.

I’ve become more of a loving person, and much more affectionate.  Yes my body hurts, but since this life changing experience I have wanted to cuddle more, and just be more lovey-dovey even if I do hurt.  The bad part of this (can there be one) is I can’t fully explain why and it sometimes pushes people away.  Emotional Padre is what one close friend called me after this happened, what can I say;  I think it is because I looked death in the eye and was granted new life.

Being in pain does limit what I want to do.  Intimacy when it did happen (not for my lack of trying but that’s a story for another day) was always wonderful but I would hurt so much afterwards, and still want to cuddle/snuggle.  I can’t hold my fountain pen for long and that kills me because I still like to sit down and actually write out a letter in long hand.  Doing simple chores can cause me the greatest pain as well, folding my clean laundry will put me in severe pain for hours.

There are days when I don’t even want to get out of bed and tend to my duties at church, which is more than just the occasional thing.  Still though I manage to fight the demon of pain (some days I lose though) and tend to my precious charges.

Even some days I am a grouch because of the pain, yes sweet, kind loving me can be a grouch; and that’s when I need some to gently hold me the most.  Dear Readers pain does all sorts of things to people and each one is affected by it differently, be patient with those that are in pain and so some love instead of vile vinegar to them; it will go a long way.

That’s how pain changed me in a nutshell, if you have any questions please feel free to ask me.

About Eddie

In his own words, Eddie is a man of God who loves all his family and friends, proud of his Italian American heritage. He blogs about a wide variety of topics and is always great at listening when you need someone to talk to. If you haven’t already checked out his blog, please head over now!

Mental Monday: Aspiration, Inspiration and Achievement

We made it!

Thank you so much to everyone who contributed to the Foggy Frog and the Pain Gang Kickstarter Campaign, either through donations or through spreading the word and sharing the project with everyone they know. Because of all of you we have successfully raised the $7,500 we need to publish and distribute the first run of picture books!

After a week offline spending time with E and going camping, I am now back and ready to provide some informative and inquisitive posts over the next few weeks.

Some time soon (I’m hoping later this week) I will dedicate a post to sharing some of the behind the scenes stats I have from the campaign and outlining what the next steps are and where we are going.

Today though I want to talk about a topic which has been on my mind a lot lately…

(c) Megan S, December 2013

What makes someone an inspiration?

Lately, with this Kickstarter campaign and just with the way I’ve been dealing with my illness, I have had a lot of people telling me I have inspired them to do things differently or just that I’m an inspiration to them. This makes me feel uncomfortable.

Don’t get me wrong, I’m glad that what I’m doing is helping others and making a difference! I just don’t feel comfortable thinking of myself as an inspiration. I still feel like I’m just aspiring to be who I want to be…

I would love to make a huge difference and help make this world a better place, both in terms of sustainability and the way humans treat one another, but I feel like I’m still learning and making things up a lot as I go along.

Maybe this is something that everyone struggles with.

The way I view myself and what I am doing seems to be different to the way others are viewing me. Being told that I have inspired others with the same illnesses as me to change the way they think about their life and to take on a project to help them have something to focus on is wonderful. It feels nice to know that I’ve helped that other person to make a difference in their own lives but it feels strange to think that others are looking to me for guidance.

People who have inspired me probably feel the same way. They come from all very different walks of lives. Some are famous and others are in the background, unrecognised.

I’m sure we all believe that we are just doing what we need to do. Most of us are not looking for fame and glory or any form of recognition other than a thank you or an encouraging comment. We feel ‘normal’ and ‘insignificant’ even, but others in our lives may view us as ‘heros’ or inspirations’ who demonstrate the behaviours and values that they want to be able to do.

Recognition and Achievement

I’ll admit that even I am surprised and overwhelmed by what I have managed to achieve in the last few months, but I still struggle with accepting recognition for these accomplishments. Everything I have achieved in my life has been possible because I have had support, I have had others helping me in achieving my dreams. I am very humbled by the support and encouragement I have been recieving.

Over the past 3 years (2012, 2013, and 2014) I have recieved recognition for my environmental work in the form of a nomination for the Channel 9 Young Achiever Awards – Flinders Port Environment Category. Each year I have been in the Top 3 Finalists for the award. I may not have won the actual award in any year, but to be nominated (or asked to nominate myself, as was the case this year) is an honour and I am very grateful for the opportunity to be recognised publicly for my work in this field.

On our way to the Channel 9 Young Achiever Awards Dinner 2014.

Similarly, I am grateful and extremely humbled by the recognition and support I have recieved for the Foggy Frog and the Pain Gang campaign.

Thank you!

Without each and every one of you none of these achievements would have been possible. I may be an inspiration to others but my inspiration comes from the community spirit I see in the groups I have joined and in the friendships I have formed through this blog and my work.

Who inspires you?

What do you believe makes someone an inspiration?