Tag Archives: zerotohero

Invisible Illnesses: Raising Public Awareness & Gaining a Reputation

19 Jan 14
Megan
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I’m posting this a bit late, but it is in response to yesterday’s Daily Post’s Zero to Hero task and Daily Prompt:

Do you have a reputation? What is it, and where did it come from?

Is it accurate? What do you think about it?

I have always had a reputation of being a bright and bubbly individual, easy to approach, who takes a positive approach to almost anything life throws at me. Sustainability was my life, in both work and personal life I tried to spread the word to be sustainable and do things in an environmentally friendly way.

Today I don’t want to talk about that me, although it is a big part of me and I have a reputation there, I want to talk about the current me. Home on sick leave, my reputation has changed (in my mind at least).

Moving from sustainability expert to invisible illness advocate

(or a combination of the 2)

Since becoming ill, I have begun to feel like I have a reputation for being lazy and unsociable (is that even a word?).

Photo (c) E. S. January, 2014

Photo (c) E. S. January, 2014

But I know, deep down, that this isn’t me and I know that the people who know me well shouldn’t be thinking that way. So, I decided to focus on what I could do to build myself a reputation that fit with the old me, but toned down to pace and fit with my illnesses.

To build this reputation, I started this blog. A way for me to clearly outline what I’m doing and how much it takes out of me. As a result of this blog, I have built a whole new group of friends here online and through my Facebook page and twitter account. It has also helped me realise how wide the problem is of lack of awareness in the general population, not only for the illnesses I currently suffer from (ME/cfs, Fibromyalgia and Pelvic Congestion Syndrome) but for all invisible illnesses.

To maintain some form of sustainability in my life, I am trying to make my activities as sustainable as possible. For example, I use recycled or secondhand material whenever possible for my sewing projects.

Sustainability comes into my campaign to raise awareness for invisible illnesses in the way I am forming my campaign. I really want it to be a project that comes from the community for the community. So, I’m building up a reputation of being a positive and cheerful individual who people can approach for support.

I am building a reputation, like the one I have in the field of sustainability, of being able to explain things in a clear and simple way that everyone can understand.

I want to ask all of you to become a part of my project to bring Foggy Frog and the Pain Gang to the world.

Join in the campaign by following my blog and following me on Facebook and/or Twitter. By doing this you will get all the regular updates on the project and get the opportunity to participate in some great give aways and contests I am planning to hold over the next month or so.

So please, if you don’t already, follow my blog and choose at least one social media channel to follow me through. The links to do all of this can be found in my side bar.

Thank you,

Megan


New Layout and About Me Page

12 Jan 14
Megan
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new website layout

 

I’ve update my About Me page and made it the front page of my blog and my tag line. I’ve also updated the theme for my blog.

In the next few weeks I’ll be adding a few new pages where I will be asking you for feedback on the support groups and websites that you use to keep in touch and get help.

What do you think of the new layout?

Do you have any suggestions on other things to add to the site?

Physical Friday – Yoga practice for Chronic Pain

10 Jan 14
Megan
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Day 6 of the Daily Post Zero to Hero Tasks was to try a new element. Today I’m trying out making my own video and posting on youtube to share with you here. Both making my own video and using youtube are new to me, so let’s see how we go. 🙂

This Physical Friday video post shows you part of my daily yoga routine. I’ve found the poses in this video extremely helpful in reducing muscle tension, and as a result pain levels.

So, please enjoy the video and let me know what you think. I may start using it more often when I’m too tired to type.

Do you use yoga as part of your routine?

What are your favourite poses?

Invisible Illnesses and Public Perception

09 Jan 14
Megan
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Image curtesy of Facebook

Image curtesy of Facebook

This post is written in response to day 3 of the Daily Post Zero to Hero tasks.

I’ve seen this image going around Facebook a lot lately and it has got me thinking.

Since my crash in April last year, I have become aware of this large community that I didn’t even know existed before. The Spoonie Community is one that I’m finding myself relating to, and becoming involved with, more and more as I increase my attempts at raising awareness and understanding how chronic illnesses affect our lives. Although my obvious focus is on Myalgic Encephalomyelitis, Fibromyalgia and Pelvic Congestion Syndrome, I am recognising the similarities between the symptoms and issues I face with these illnesses and those faced by others in the Spoonie Community.

A big issue is the fact that awareness levels about chronic illnesses in the general public, especially illnesses with invisible symptoms, is low almost to the point of being non-existant. I don’t remember ever talking about chronic illnesses in school when we learnt about health related topics. There was information on acute and life threatening illnesses such as cancer, and some information on mental health and topics like depression, but nothing on chronic pain, brain fog and fatigue. This lack of information and awareness leads to a lot of negative responses to people who suffer from these illnesses, with comments like those in the image above that demonstrate a lack of awareness and belief in the reality of the symptoms these people are facing.

Some of the illnesses, such as Myalgic Encephalomyelitis, isn’t even widely recognised or accepted as an actual physiological condition in the medical community. People suffering with these conditions often have to face not just the constant and often extreme symptoms caused by their conditions, but the disbelief and lack of sympathy from those around them. Many are even treated like it is all in their head and told that the issue is psychological.

I believe that it is important that awareness of these illnesses be raised in both the general and medical communities. This awareness raising should begin in schools at a young age to increase acceptance and understanding in the community.

Today I am taking the day to focus on my personal visions of what a successful 2014 would look like for me. On top of the obvious answers such as increased or stablised health, returning to work in some capacity, and enjoying time with my family and friends, I believe there will also be a section in there on increasing public awareness of invisible illnesses to help increase acceptance and understanding. I already have some ideas on how I can do this and I will share them with you over the next few months.

To succeed in changing public perception I believe we all need to work together. There are already projects out there that are focusing on increasing awareness around particular topics, such asthe Canary in a Coal Mine film focusing on raising awareness of Myalgic Encephalomyelitis, that focus on engaging adults but from what I have seen so far there is still a gap in education that would be suitable for all invisible illnesses and all ages.

Why am I here and what do I want to achieve in 2014?

07 Jan 14
Megan
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Seeing as I’m still relatively new to blogging I thought I’d follow along with the daily post’s Zero to Hero prompts.

I’m a little behind but the first prompt was to write a post introducing yourself and your blog.

Obviously I had already done this when I first began blogging but I thought this might be a good opportunity to reintroduce myself, as I have quite a few new followers, and to outline what I’m hoping to achieve this year with my blog.

Why am I here?

I’m here because I felt the need to share my story and to connect with others who could understand what I was going through.

April last year I was struck down with extreme abdominal pain that the Emergency Room doctors could not work out what was causing it. Almost immediately after that other pains and extreme fatigue (not the right word but I can’t think of a better one right now) and brain fog set in as well. Although I attempted to keep working for the first month of this, work eventually decided that their duty of care lay in telling me to stay home. I am very grateful they did as I really wasn’t being as productive as I usually was and the pain and exhaustion was so extreme I wasn’t even managing a full day in the office.

That began a journey of doctors visits and questioning of what was wrong and how we could fix it. No doctors yet have been willing to put their neck out and give a definitive diagnosis of what is wrong, however Myalgic Encephalomyelitis (ME/CFS) and Fibromyalgia is the main diagnosis that they are leaning towards; one doctor has written Chronic Fatigue Syndrome and Chronic Pain on one of my doctors certificates for work. I have also been diagnosed with Pelvic Congestion Syndrome.

My life as a knew it is currently on hold, and I have been spending my time planning a way forward. I now know deep down that even if I make a full recovery, which at this stage is still questionable, I need to make some changes to my life. This brings us to the next big question…

What do I want to achieve in 2014?

I have already outlined my aspirations for 2014 in terms of my life with a particular focus on my physical, mental, and spiritual health so I don’t feel the need to reiterate that; you can follow the links to read about it.

In terms of this blog, I am hoping to raise awareness of these invisible conditions that I have and to connect with more like-minded individuals who are journeying along a similar path to me; a path of self discovery. It doesn’t matter where you are starting from, sick or healthy, no idea or clear picture of where you want to be, I am interested in sharing my journey and learning from others along the way. I also want to strengthen the friendships I have already built in my first few months of blogging. The community here is just so supportive and caring and I love being a part of it.

So far in this blog I have managed to post every day, other than the week off between Christmas and New Years. This year I will not necessarily be aiming for this, as I believe to achieve my aspirations for 2014 I need to be getting out and participating in a wide variety of activities. However, I do aim to post at least 3 times a week (once for each of the focus topics for this year) and I will be posting other posts as I write them. I’m just not going to say I NEED to make sure there is a post up every day.

I hope this year will open up new opportunities for all of us. I have a couple of large exciting projects that I am just in the beginning stages of planning and these will be shared with you as they get closer to fruition. At least one of these projects I’m hoping will promote more interaction between myself and my readers, and also between fellow bloggers. I also hope to be able to get some guest blogging ocurring (both on my blog and as me guest blogging for others).

2014 would be considered a successful blogging year if I manage to educate at least 12 new people about ME/CFS, Fibromyalgia and Pelvic Congestion Syndrome and I have at least one guest blogger on my blog and I guest blog on at least one blog.

I look forward to sharing 2014 with you and I hope all our dreams and aspiriations can move towards becoming realities as we move along this journey of life.