Physical Friday: Another busy week!

Hi everyone, today is the last day of the Foggy Frog Kickstarter Campaign. We’re now 76% funded and have less than 8 hours until the campaign ends!

I’m feeling very humbled and grateful that I have such an amazing group of family, friends and followers who have recognised the importance and the potential of this project and have decided to join us. This has been an amazing journey and I have been overwhelmed by the love, support and encouragement I have received.

Several of you have gone above and beyond what I thought was possible to help me promote the campaign and encourage others to join us. I want to say a massive thank you to you and let you know that if this campaign is successful you can expect a little something from me to show my appreciation.

Sorry, I’m starting to waffle now. 🙂

What I actually wanted to talk to you about today was pacing. I know it’s a topic we’ve covered before, but I’ve realised in the past 2 weeks that even when you feel like you’re pacing well you can actually push yourself too far.

(c) Megan S, December 2013

As you all know the past few weeks have been very busy and very hectic for me. Not only have I been promoting the Kickstarter campaign and responding to the requests and offers that have arisen from that, but I have managed to maintain some sort of social life and continued a very hectic schedule of appointments.

The first 2 weeks of this campaign I felt like I was on top of it all. I was managing to promote the campaign and spend time with my husband and friends while still having rest breaks, attending multiple appointments with the Naturopath, Physio, Exercise Physiologists, and my GP, and finding time for myself.

Unfortunately, the third week was horrible. I don’t know if I caught a virus or a bug of someone, or my body was just saying enough was enough, but I spent the third week either in the bathroom or curled up on the couch asleep (apart from a couple of appointments I made myself go to). From Monday to Friday I did no real work on the campaign, I didn’t have the energy to even do a few small chores around the house.

Luckily, this week I am feeling better (back to the pre-week 3 level of energy and pain) and I am now back into my campaign promotion and catching up on the other chores I had to do.

To me the moral of this story is even if you’re feeling fine and think you’re doing well, keep an eye on your tell tale signs (I believe mine are a slightly sorer throat and a quicker increase in muscle pain during activity) even if they’re hard to spot. I pushed myself too far, even though I was pacing. My level of activity during March has been almost double what I had managed in February and January put together. This may feel like an achievement, but if it leads to a push crash cycle it’s not.

The next few days are still very busy but after this weekend I’m going to reset and reconsider how I manage my activities, especially if I’m planning to return to work at some stage in the near future.

What are you tell tale signs you’ve done too much?

Do you have a routine that works for you or a technique for managing activities and ensuring you don’t overdo it?

 

Click on the image above to head over to the campaign and back us. Less than 8 hours to go!

I’m going to be online over here for the next few hours if you have any questions or suggestions.

Foggy Frog… Matching Funding

Yesterday we announced in our update on the Foggy Frog Kickstarter campaign that an anonymous backer has offered to match all pledges to the campaign up to $1,500 in the next 49 hours (was 72 hours yesterday).

This is great as it means that if you pledge today (or increase the amount you’ve already pledged) you’ll really be adding twice as much to the campaign. At this stage (with the matched funding – not on Kickstarter yet) we’re 62% funded.

Please pledge your support now by clicking here and selecting the “pledge my support” button (big green button) on the right hand side if the page. From there follow the steps to select your reward and pledge amount.

Remember every dollar will help us and we only have 50 hours left to reach our goal or we get nothing!

Mental Monday: Top 3 tips for preparing for a Kickstarter campaign with a chronic illness

As I’m sure by now all of you are aware, we have been running a Kickstarter campaign this month to raise the funds necessary to print the first run of the Foggy Frog and the Pain Gang picture book. We now have just over 4 days left to raise the $3,219 we still need to reach our target.

Running a Kickstarter campaign is not the easiest thing to do, even when you are 100% healthy and have all the time in the world. With several chronic illnesses, limited energy and multiple doctors and specialist appointments, this last month has been extremely challenging for me as the coordinator of this campaign.

In future posts I’ll talk about the steps I’ve taken during this campaign (and those I would’ve taken if I was doing it all over again) to ensure a good balance between looking after myself, reaching our goal, and still managing to have a life. Today I just want to share my top 3 tips for preparing for a Kickstarter Campaign with a chronic illness.

These tips are based on my own experience, as well as the extensive research I did prior to and during the planning stage of this campaign.

I did a lot of these things prior to launching the Foggy Frog campaign, but there were a few things I didn’t quite get right. These are the things I will focus on when I do a post-mortem of the Foggy Frog Campaign in the next few weeks.

I’d also like to note that these tips serve well for planning any event or campaign or even just living with a chronic illness. We should always research and understand what we’re getting ourselves into, plan in advance as much as possible, and make sure we have a support team around us to help when we need it!

Right now my focus is on completing the campaign. With $3,219 still to raise in just 4 days it would be great if you could all share the campaign with people you know and encourage them to participate!

Life with Foggy Frog and the Pain Gang: Jenn’s Story

Sorry I’ve been offline for the last week. I’m currently struggling with energy and tummy issues so have had to take a break from everything else to try and recover.

Foggy Frog and the Pain Gang Update

I’d like to start this post off by thanking everyone who has already pledged their support for the Foggy Frog and the Pain Gang Kickstarter Campaign. We’ve reached 50% of our goal and we have just 8 days left to reach our target or we get nothing.

Please get behind us now and help us reach our target! I know that if everyone helps out by spreading the word, and pledging their support (even $1 is great!), we can reach our goal and get this book out to the world.  So please use this next week to spread the word and join our campaign!

Now on to today’s story. About a week ago I was contacted by Jenn from Tangled Up in Passion, she was inspired by the true stories we’ve been sharing about life with Foggy Frog and the Pain Gang and wanted to share hers. So, given how much I’m struggling today… here’s Jenn telling her story (Thanks Jenn!)

Jenn’s Story

I guess I can say that I had a pretty average life before getting fibromyalgia and chronic fatigue syndrome (CFS). I was working full-time as a teacher’s assistant, just graduated from college with a Bachelor’s degree in psychology, and I was pretty optimistic about the future. However, I wasn’t really sure where I was going career-wise. I worked in childcare since being a junior in high school, so I wanted to do something different.

Boy, was I going to do a 360 a year after graduating from college or what!

The summer of 2012 was “The Summer from Hell”: the unemployment checks came late, money was very tight, I worked part-time as a sub for a horrendous childcare center (my full-time job was a seasonal one), I quit and was paranoid that I would lose my unemployment for quitting this job, and when I was going to return to work for the fall, we were going to have an extreme staff shortage (ten times the stress!)…

For sure, you know where the story is going.

By the time the fall came around and I was back at my seasonal job, I noticed that I wasn’t myself at all. I thought I was just dealing with the typical “work stress” and “job burnout” because I hated my job with a passion. I was dealing with more fatigue than usual, I was in pain every day (which began in my neck and back), and I had frequent panic attacks…

Yep, that was around the time when Foggy Frog and his friends decided to stay with me and made an oath that they would stick around!

During the winter, the symptoms worsened. I got sick frequently, I was tired all the time, I was depressed, and the pain was now in my entire body, coming in a variety of ways (burning, pins and needles, gnawing). I knew that something was wrong because no matter how much I rested, these symptoms wouldn’t go away!

Months later, I was finally diagnosed with fibromyalgia (however, I’m still waiting on the CFS diagnosis). I’ve been put on some medications which help with alleviating some of the pain, fatigue, and anxiety/depression. I also took an online course called “CFIDS & FM Self-Help Introductory Course” which further educated me on how to lessen the severity of the symptoms as well as techniques to use in order to have better control of my chronic illnesses. The course was very helpful and the textbook has some great tips!

With having fibro and CFS came some losses and drawbacks: I’m unable to work, money is even tighter for me now, I can’t drive as much as I used to (I can only drive to places about 10 minutes away), I can no longer eat things that contain gluten (since these illnesses have triggered a gluten sensitivity), and my family helps out with errands.

Despite the obstacles I have experienced, I have been led to many wonderful things: blogging, opening an Etsy shop where I sell my crocheted items, volunteering for the Meals on Wheels program, and I have met a lot of wonderful people through my volunteer work and through blogging.

So yeah, I don’t like Foggy Frog and his friends very much…however, I’m learning to deal with them. With having certain tips and techniques up your sleeves, you can at least keep them at a distance!

About Jenn

Jenn M. is the creator of the blog “Tangled Up in Passion” as well as the shop owner of the Etsy shop “Jenny Square Crochet.” Jenn has had fibromyalgia and CFS for over a year. Despite the hardships and changes that have taken place with her chronic illness, she has been able to find the blessings and positive opportunities from it. When she is not blogging or crocheting, she enjoys volunteering in the kitchen for the Meals on Wheels program, singing, walking her dog, and watching cartoons.

Foggy Frog Progress Report

Wow, just over a week and we’re a 3rd of the way to our goal! Thanks to the 51 people who have already backed the campaign, we have made it past the 30% mark that most experts say is the point at which you’re 90% likely to reach you’re final goal.

To celebrate this, and the fact it’s a public holiday here, we’ve added 2 new reward tiers to the campaign:

1. A Spoonie Survival Kit which includes everything from the $25 tier (all versions of the book, thanks and your name on the Wall of Gratitude) and a handmade wheatbag and meditation cushion made from upcycled materials in the colour of your choice.
2. A School Class Pack which includes an audio and Ebook version of the book and 10 paperback copies of the book.

As a reminder here are the other tiers available:

 

Hurry and get in quick to get your hands on one of these limited edition offers. Click here to add your support now!

Once again, thank you to those of you who have already pledged your support. I’d love to get to 100 supporters by the end of this week so please add your support, even $1 shows you care!

 

Physical Friday: 3 key steps to surviving a busy week with Myalgic Encephalomyelitis and Fibromyalgia

So… it’s Friday morning here, and the Kickstarter campaign for Foggy Frog and the Pain Gang is now in it’s 6th day and 25% funded. If you haven’t checked it out already, please head over and watch the video to understand what we are trying to achieve.

This week has been the busiest week I’ve had in over 8 months. Today is the first day in a week that I don’t actually have anything ‘planned’ with a set time I have to do it. I do want to catch up on the washing and do a few other littler chores around the house, but I don’t need to go to an appointment or meet up with anyone outside. Surprisingly, although I’m fighting with Foggy Frog to stay focussed on what I’m doing and fighting with my eyelids to stay open, I’m not actually feeling as bad as I thought I would today.

It’s Physical Friday today, so I thought I’d share with you the steps I took this week that I think may have helped me survive such a busy week without a full on crash (touch wood).

(c) Megan S, December 2013

3 Steps I took to survive my busy week

1. Plan in Advance

I knew in advance that this week was going to be extremely hectic and possibly even stressful so when booking the appointments I tried to space them out over the week and made sure I had time to rest both before and after every appointment.

To keep the impact of the Foggy Frog campaign down as low as possible I’d planned in advance how I was going to launch it. I asked friends to prepare the food, I pre-wrote all the questions for the online launch, and I prepared and scheduled emails to go out on launch day. Without having done this the launch would have been a lot more stressful for me and would have probably caused a crash on its own without adding the rest of the week’s activities.

I also had my first late night class (a 3 hour class starting at 6pm) for the illustrating children’s picture books course. Although I had no way of knowing how I was going to cope with this class, I had made plans for E to be ready to pick me up at any stage if it got too much and I made sure the tutor knew that if I left early it wasn’t that I didn’t want to be there, it was that I couldn’t last any longer. (Luckily it actually finished slightly early and I made it to the end).

2. Be Gentle on Yourself

There were multiple times during the week when I started to feel that it was all getting a bit too much and I wasn’t going to cope. At these points in time I made myself stop whatever I was doing, sit or lie down, close my eyes and just breath for a while. This technique seemed to work well as ‘mini breaks’ throughout the days when there was no way I was going to get my normal rest.

I also prepared mentally and let myself know that it was OK if I couldn’t get everything done. I gave myself permission to leave things early, or cancel appointments, and even though I didn’t need to do this in the end having the permission removed the additional stressors from my days.

3. Take Regular Breaks

This was a big one, and I discussed in more detail on Wednesday how I was planning to do this. Finding time for myself and just relaxing was probably key to reducing the impact of this week on my health and wellbeing. I’ve had 3 baths this week, done several short meditations, and taken very short breaks just to breath as I outlined above. The baths all used Epsom salts which increase my magnesium levels and reduce cramping, so they were extremely beneficial on the nights I was feeling over it all. The other activities just gave me mental space to step back and assess where I was at thus avoiding too much stress and discomfort.

These three steps have been vital to me this week and I will keep on using them during the rest of the Kickstarter campaign. We have just over 21 days to go and $5,600 still to raise. I know that we will make it because I know how important this book is for our community.

Everyone I have spoken to who suffer from any of the invisible illnesses (Fibromyalgia, ME/cfs, MS, Lupus, etc) all have the same story to tell… Lack of awareness and understanding (and even misunderstanding) in the general community about what it’s like to live with these invisible illnesses. Foggy Frog is the first step in providing awareness and understanding to the wider community on what this is like.

Do you have any other steps you would add for surviving a busy week?

Have you found you can maintain a higher level of activity for an extended period of time without crashing?

Please get behind Foggy Frog and the Pain Gang. Add your voice to ours in letting it be known that we want to be heard. A donation of just $1 will add your name to our list and the more people we get working together, the more likely it is that the general population will stand up and take notice. Visit http://bit.ly/FoggyFrog and pledge your support today.

Knitters wanted for penguin pullovers – ABC Melbourne – Australian Broadcasting Corporation

I know a few of my readers knit and crotchet… you may be interested in this 🙂

Wisdom Wednesday: Finding time for myself

(c) Megan S, December 2013

During this busy month, I am focusing on finding whatever time I can for myself. That means through the rush of running the Foggy Frog Kickstarter campaign, celebrating multiple birthdays in the family, attending multiple specialists appointments and hopefully attempting a very part time return to work, I’m also trying to find time to take regular rest breaks, meditate, maintain my yoga and walk routines, have relaxing baths, read a book and spend time with my husband.

Photo (c) E. S. January, 2014

These activities are important for maintaining my mental and spiritual health. Between each activity that I do I am going to find at least 10 minutes for me, to do something that relaxes and refreshes me for the next activity to come.

Wish me luck in my endeavours to maintain a balance between activity and rest, between Needs and Desires, and between helping others and looking after myself. It will be a challenge, but it is one that I accept and will fight to achieve as it is one that will mean the difference between a complete crash and a maintained or improved health at the end of March.

How do you make time for yourself?

What activities do you enjoy doing in that time?

Life with Foggy Frog and the Pain Gang: Trisha’s Story

Trisha from Notes from the Fog has been a strong supporter of the Foggy Frog and the Pain Gang Campaign from the beginning. Throughout the campaign she will be sharing her own Foggy Frog stories on her site, but today she is sharing her story here for us.

Trisha’s Story

After the birth of my youngest son in January of 2000, I started feeling really awful. I was tired. My back hurt and I felt a constant, dull ache throughout my whole body. My mind got muddled and fuzzy. Sometimes I felt dizzy or like I was dreaming instead of awake. Nothing felt real but everything felt overwhelming. At first I thought it was just from lack of sleep but it continued. And worsened. I wondered if everyone felt this bad, that maybe all parents were this tired and achy, even though no one else mentioned it. I had no idea that Foggy Frog and the Pain Gang were working on me, preparing for a takeover.

In the spring of 2003, Foggy Frog and the Pain Gang made their big move and completely hijacked my life. Two days after getting my first massage, they hit me like a ton of bricks. Foggy Frog took up permanent residence in my mind, making me feel foggy and groggy all the time. I was so tired, my body feeling so heavy that I could barely move. I had difficulty staying awake to watch my kids. The Gnawing Gnats crawled all over my body, gnawing away on my bones and muscles, causing intense, constant pain. They were joined by the Stabbing Spiders, the Burning Bats and the Needling Nematodes and together they attacked my back, my hips, my neck, my shoulders, my feet, causing many different kinds of pain, all severe and agonizing. My whole body felt achy, like it had been run over by a big truck. I realized something was very, very wrong.

I went to the Naturopath I’d been seeing and she tested me for a few different illnesses, most of which were terrifying. While I was online researching the deadly blood disorder she suspected, something told me to look up fibromyalgia. I did and my jaw dropped. The description of fibromyalgia was describing me and everything that I was experiencing! I went back to my Naturopath and told her my theory. She reluctantly tested me for tender points and seemed irritated when I flinched as she prodded each tender point. She did more blood work to rule out other illnesses, (and thankfully that deadly blood disorder) then finally, very reluctantly agreed that my symptoms fit a diagnosis of fibromyalgia…which, in her opinion, wasn’t a real diagnosis and, therefore, couldn’t be treated.

I ditched her and went to an allopathic doctor, who also ran some tests to rule out other illnesses, then prescribed several medications that didn’t promise much relief. This doctor told me that fibromyalgia is something that doesn’t progress but never really gets better either, so basically I would have to learn to live with it. Lovely! I read and researched on my own and everything I read pointed to the same conclusion: Frog and the Pain Gang were here to stay. This was very discouraging to say the least. They were making my life miserable and I wanted them gone!

Over the years, I’ve learned ways to keep Foggy Frog and the Pain Gang from getting too far out of control. If I pace myself and don’t try to do too much (which translates to less than half of what a healthy person does in a day) I can keep the pain, fatigue and brain fog to a level low enough that I can semi-function…most of the time. But if I left my guard down and do too much, Foggy Frog and the Pain Gang quickly remind me that they have the final say in how much I can do. They are always ready, waiting to launch an attack and cause a flare-up of symptoms. With lots of rest, the flares do eventually subside but the reality is that every day, even the days I call “good” days, I feel Foggy Frog muddying up my mind and the Pain Gang chewing on my bones and bruising my muscles. They are a part of my life now and there’s no ignoring them, only learning to live with them.

About Trisha and Notes from the Fog

In her own words, Trisha is a 43-year-old, foggy-brained stay-at-home mom who has struggled with health issues since she had mononucleosis at 16-years-old. Notes from the Fog is her journal of learning to live life well while living with the pain, fatigue and brain fog of fibromyalgia, plus all her favorite distractions such as pets, squirels and birds, her herbalism course, aromatherapy, teaching herself to sew and whatever else happens to strike her fancy.

Please don’t forget to head over to http://bit.ly/FoggyFrog and check out our Kickstarter campaign to get Foggy Frog and the Pain Gang out in the world in the form of a picture book.

Foggy Frog and the Pain Gang – Making the invisible visible by Megan Schartner » Foggy Frog and the Pain Gang Launch Party — Kickstarter

Please check out my update on the Foggy Frog Kickstarter page.

I have provided photos from yesterday’s launch.

Foggy Frog and the Pain Gang – Making the invisible visible by Megan Schartner » Foggy Frog and the Pain Gang Launch Party — Kickstarter.