Are you feeling better? 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?

Mental Monday: Social Media, Health and Privacy

(c) Megan S, December 2013

As we move into this Kickstarter campaign to raise funds for the Foggy Frog and the Pain Gang picture book I want to take a look at our social media habits.

Both in my online communities and my home life the issue of safety and privacy in sharing information online has been discussed over the last few weeks. As people become more and more reliant on technology for their communication and relationship building they are sharing more and more information about themselves online.

How do we know we’re not sharing too much?

I don’t have the answer to this question but it’s something I’ve been debating with myself and those around me. There are 2 key examples I’ve been thinking about a lot lately.

Firstly, my husband tracks his rides with an online service and I brought up the fact that it’s a bit concerning people can work out where he lives and works thanks to the information that goes up on the site that anyone can access. He acknowledged my concern and then pointed out that if anyone looked him up online (either on Google or in a telephone directory) they’d get both addresses anyway. With all the information that is available through Facebook, Twitter, LinkedIn, and other networking sites, it is now fairly easy to find out almost anything you want to know about anybody (as long as they’re online – which most people are). This scares me.

The second example is my blog and online presence. I want to be as open and honest with everyone as I can be, but how much information is too much? Especially when it comes to my health. Anyone could read what I’m writing here and elsewhere and, although I know the truth, people may misinterpret what is written or may abuse the information they have access to. For example, if I wrote about an outing I went on or an event I attended I would know that I was only able to attend that event with a lot of careful planning, scheduled rests both before, during and after, and usually with a massive payback afterwards. But someone else reading about the event may just see that I went out and had fun. They may question why, if I’m able to attend this event, am I not working, why can’t I attend another completely different event that they want me to attend, or why I claim to be unable to help out with certain activities. These kind of misunderstandings and miscommunications also scare me.

My questions for you are:

How can we protect ourselves from misunderstandings or misuse of information that is readily available about us online?

How much information do you share online about your health and activities?

 

An Invitation from Foggy Frog and the Pain Gang: We Launch Today!

In just under 5 hours the Foggy Frog Kickstarter campaign will be launched.

It would be great to get as much support as possible in the first few hours of the campaign to encourage others to donate as well.

Please join us on the Facebook page or Twitter (#FoggyFrog) to gain access to the campaign page and be one of the first to choose the reward level you’d like to support us at. While you’re with us on Facebook and Twitter, why not join in our conversation?

We will have a series of questions available for people to answer or you can share your own stories.

On the Facebook page you can answer the questions as comments below each question and add your own stories as separate comments.

On Twitter make sure you use the hash tag #FoggyFrog and to answer each question include the question number (e.g. #FoggyFrog A1: your answer). To add your own stories just be sure to include the hash tag.

Foggy Frog Launch Questions:

Welcome to the #FoggyFrog campaign launch. 

Q1: How are you today?

Q2: This is a celebration. How do you like to celebrate?

Check out the campaign here: http://bit.ly/FoggyFrog and watch the video.

#FoggyFrog causes Brain Fog, Fatigue & sensory overload. 

Q3: How do these symptoms affect you?

The Pain Gang consists of Gnawing, Stabbing, Burning and Needling. 

Q4: Are there any other types of pain you’d include?

Q5: How do you explain your illness to those around you?

Q6: Why are you supporting #FoggyFrog and the Pain Gang?

Thank you for joining us today, I hope you’ve enjoyed the launch.

Please take this opportunity to contribute as much as you can and share http://bit.ly/FoggyFrog with others.

Join us from 1 pm ACST (around 9:30 pm EST for those of you in the US) to make it clear that those of us with invisible illnesses deserve to have our stories heard too!

Invisible Illnesses: Raising Public Awareness & Gaining a Reputation

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

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

Reducing Technology

I’ve already discussed the general benefits of getting away when you have chronic illness. Today I want to focus in on one key factor I believe was beneficial to me; reducing my reliance on technology.

In today’s environment there is technology everywhere. This technology can be a good thing as it allows us to connect to others in a way that wasn’t available before.

For example, without technology I wouldn’t be here writing to all of you. People who live all over the world are able to connect in real time via the phone or the internet. Since being ill my connection with a lot of my friends and family has become very connected to the use of technology. Without it I’m sure my relationship with some of them would be a lot less connected or even completely gone. For these reasons along with many others to do with safety and , I do appreciate the importance of technology in our lives.

However, having gone basically technology free (other than a nightly phone call to E each night) while on my girls weekend on Dangar Island I have noticed how much more relaxed and happy I am without that constant connection and constant interruption to my daily life. This has got me rethinking my connection to my various technological items (tv, computer, tablet and phone). I do use these items for activities that are good for my health, such as connecting with friends and family as mentioned above and tracking my symptoms and energy usage, but I believe I am too connected to these items for my mental and emotional health.

To try and decrease stress and anxiety levels and increase feelings of happiness and productivity, I have decided to limit my time on each of these items. On a normal day I am aiming to limit:

• TV only in the evenings when E is home to ensure I try and do other activities during the day. This will not apply on crash days and really bad days when I can’t do any high level activities.
• Twitter/Facebook/Email/Blog Comment replies a maximum of three times a day (after first relaxation and exercise in the morning, around lunch time, and in the evening before dinner).
• Blogging and other online activities a maximum of 2 hours a day.

By reducing these activities I’m hoping to increase my emotional wellbeing by reducing my anxiety and stress related to having to respond to messages as soon as they arrive and increasing the time I spend outside in nature which I find very relaxing and beneficial to my health. I believe it will also increase my mental wellbeing by increasing my creativity and productivity to fill the remaining time in my day.

I am also considering having a regular day or weekend that is a technology free time (even if it’s once a year). I loved my time on Dangar Island and believe I have come back refreshed and reenergised to tackle my problems and dreams for my future.

Have you ever tried having some technology free time?

Related articles

• Disconnecting on Weekends Too Much? (sneekygeekers.com)
• How Technology Speeds Up Time (And How To Slow It Down Again) (huffingtonpost.com)
• Has the internet increased or decreased connectivity? (christiantoday.com)
• Stress, anxiety and depression – Five steps to mental wellbeing! (olivinexpresssblog.com)