Sorry the elephant has been hiding...

In my mind there are always so many things I WANT to do. But then reality kicks in, fatigue kicks in, pain kicks in. Life is a never ending list of priorities and something always has to give. One of those things was this blog.

To sum it up, 2014 and 2015 have been rough years. Disappointment, sadness and stress have been the name of the game.

I still look for inspiration and hope from my fellow rheum-mates and spoonie friends. I have only been watching from the sidelines, rather than being the engaged patient I have been in the past.

So today I let you know I'm here, and that I have just been sitting quietly, I thank you all for sticking around!

I leave you with this thought...

Pain, pain go away, come again another…

Well, never!

I never thought that chronic pain would be my new normal. I hurt almost all the time. And when I don’t hurt it always surprises me and catches me off-guard. Drugs can control my inflammation and swelling but the constant aching and hurt never really go away.

Like so many diseases, chronic pain is just part of the package. Pain is almost always included in the deal.

That’s why when Canada AM did an interviewed with Lynn Cooper and Dr. Angela Furlan this week, I was so grateful. Grateful that people are starting to talk about the kind of pain that exists 24-7. The kind of pain that Tylenol or Advil laugh at, the kind that make getting through each day challenging.

Check out the Canada AM interview here: Chronic pain: With a plan, it is possible to live well

Ms. Cooper is the president of the Canadian Pain Coalition and because of an accident she has been living with chronic pain for 25+ years. She now suffers from fibromyalgia and migraines. Wow! That’s a whole lot of hurting for a long, long time. And yet she is well spoken, calm and appears comfortable. Can she really have chronic pain?

She said so many things that really hit home. She talks about being a really good patient always doing everything the doctors told her to do. Sometimes you think, if I do as I’m told, take the drugs I’m prescribed, then it was all magically go away. Years of being a guinea pig myself, I can say that isn’t the case when it comes to my pain.

Only after she realized and accepted that the pain was going to be part of her life, was she able to learn how to best manage it.


Dr. Furlan, helps explain the different kinds of pain. There is good and bad pain. Pain can be very useful when it's acting to alarm the system, when it's there to alert someone that something is wrong with the body, when it's telling you it may be time to seek medical attention.

But with bad pain, the alarm system is broken. She used the analogy of the alarm system in your home. Imagine someone is breaking into your house, and your home alarm realizes this and alerts you that danger is possible. The sirens go off, the police are notified. The impending break and enter has been averted. The alarm system did its job!

But what if, the alarm keeps going off and each time you check and double check but there is no reason for the alarm to go off. Something is wrong with the wiring or the sensors but there is no imminent danger. It’s just a big nuisance that keeps you up at night. This alarm (or pain) serves no purpose. It’s a “malfunction”. The repair people (health care professionals) look and look for a cause of the alarm but they never identify the problem. At least with your home you could get a new alarm system, or switch to a new provider or simply disconnect the system. But you can’t get a new body to stop the pain alarm from going off. Right?

Chronic pain is a broken pain system. The parts needed to repair it appear to be permanently "out of stock".

Ms. Cooper talks about the need to develop pain management plans, coping strategies, having a support system of family, friends and health care professionals and learning to prioritize and pace yourself so you can still do the things you love. She stresses that you must “do something that gives you joy, each day”.

Hmm... could she be counting her spoons?

She ends the interview by saying something so important. “You would look at me right now and not know that I am in pain but I am. Yes I am, very much in pain.” Remember how I said how calm, collected and poised she appeared? Looks can sure be very deceiving.

You can't see pain, but I can assure you it’s very real.

I had no idea I was a SPOONIE!

(I would be a hypocrite if I didn’t submit my own story into the Super Spoonie Story Swap – so here it is!)

It wasn’t until I realized that my RA was for real that I sought out virtual support. I was scared, worried, and a whole bunch of other unhappy emotions and I knew I needed to reach out.

I started with Facebook, I joined the odd RA group here and there. I picked groups that were closed so if I did decide to post something my FB friends would not know. I did that for about a year. They helped a little but I needed more.

I decided to try Twitter. People seemed to like it. But I wanted to be anonymous yet my true self.

I pondered a long time about what to call myself. Then ‘out of the blue’ it came to me. I will be known as “The Elephant in the Rheum”. It explained how I was feeling. My RA is there, in all its glory, yet no one is talking about it (including me). So I would be known as @ElephantRheum.

I had to Google how to use Twitter since I had NO idea. I had to learn about hashtags, retweets, favorites and all about those #FF (follow Fridays). Plus the multitude of short forms needed to make those tweets fit into 140 characters.

My first follower was @HurtBlogger (also known as Britt Johnson). I followed back, Twitter etiquette said I should. I’m sure glad I did. I’ve since learned she’s an amazing advocate for patients and doing it all while living with a chronic illness. Awesome!

So, one by one I found new people, like me, to connect with (plus the odd spammer too!). I was forming a community!

I started looking more closely at the people that were part of this new Twitter community. That’s when I started to notice the hashtag #Spoonie. It was usually listed after ones I could figure out like #RA, #Lupus, #Fibro etc. I just figured it was a rare or new disease and moved on (rare and new but somehow EVERYONE had it?!?). Then I started to notice it in people’s tweets. Spoonie this, Spoonie that. It was popping out of the page EVERYWHERE.

It started to bother me. I had to know! If I’m going to follow the lives of people with ‘Spoonie’, I’d better figure out what it is. So I Googled it.

I was SO wrong. It was not one disease, it’s not even A disease. It’s a metaphor for those living with chronic illness that are given a limited set of spoons each day to complete their daily activities. A pseudo-energy currency. Ohhh I get it! A Spoonie is someone that lives by Spoon Theory.

It was in that instant I realized that I was in fact a SPOONIE! It was all starting to make sense.

I stumbled across, #spooniechat, led by Dawn M. Gibson (@DawnMGibson). For a couple hours each week you can connect with your fellow Spoonies. You can help and support others who are having a bad week or just air your dirty laundry (always a hot topic! Haha – literally I mean actual laundry – check out #spooniechat for yourself to find out what I mean).

I learned to love live tweetchats. Engaging in real time! Not post something, and wait and wait until someone says something back to you, if they ever do at all.

I have since learned there are other awesome tweetchats. Lurk, participate, it doesn’t matter as long as you are respectful. My favs are #MedX, #hcdlr, #hcsm just to name a few. You just say what’s on your mind and go from there.

Another thing I learned is that many Spoonies have their own blogs. They use the power of the written word to express how their chronic illness affects them. I pondered for a long time about starting my own. It was @abrewi3010 (Alan Brewington) that urged me to just go for it. Thanks Alan, I did.

I have learned that being a Spoonie, isn’t a bad thing, it’s just a reality. And with it comes the opportunity to band with others, to share, to connect, to heal.

So many Spoonies I now think of as my virtual family.

Being a Spoonie wasn’t my choice, my stupid immune system decided that for me. But being a Spoonie means I am automatically entered into the Spoonie Club which makes being chronically ill a wee bit better.

Thanks!

(This is my entry into the Super Spoonie Story Swap - Helping to Build a Spoonie Blog Network.)

 

Brain fog or Writer's Block?

Join the Spoonie Blog Network today!

Patients telling THEIR stories!

Read all the details! 

 

Check out the Network Index!

 

 

 

Do you write your own blog?

 

Have you written a post you would love to share with others?

 

Then use the Submission Form!

And tell us where to find your blog/post!

 

 

I'm looking forward to reading and sharing your stories!

We can learn a lot from each other! 

 

The Network is Now Available

The first submissions on the Spoonie Blog Network are now available.

 

 

Have a look, and let me know what you think! Most important beginning reading your fellow Spoonies stories.

 

Enjoy!



*New Submission Form* for the Spoonie Blog Network

I'm still learning how to make this project user friendly for everyone.

Trying to keep things Spoonie Simple!


I have a new Submission Form that works must better than the original one I had set up. (I hope).

 

Remember if you do have problems using the Submission Form you can always email them directly to: elephantintherheum@gmail.com

 

Thanks! And keep blogging!

Building a Spoonie Blog Network

This September everyone is invited to join the:

SUPER SPOONIE STORY SWAP.

What is it?

It's a way to connect the Spoonie community, so we can support each other, learn from each other, one blog at a time.

If you are living with a chronic illness you already know that you need to carefully plan your daily activities to avoid over exerting yourself, this is what makes you a Spoonie.

The term Spoonie originated from the Spoon Theory by Christine Miserandino. If you haven't read it before, I highly recommend it! Does the story sounds familiar to your own life? Then I welcome you to the Spoonie club.

All Spoonies have a story to tell, so why not share it! And share it with people who understand and can support you. Through good days AND bad days.
 

I find inspiration and comfort reading about the journeys of other Spoonies. I have found so many wonderful blogs (and people), and I know there are many more great ones out there just waiting to be discovered. It's always nice to know we are not alone. Our disease may be invisible but we don't have to be.

MY MISSION:

To create a blog network just for SPOONIES!

(My long term goals are at the bottom) 

You can get involved in the SUPER SPOONIE STORY SWAP by either being an author or a reader or both! No pressure!

Links to all submissions will be displayed here:

So here's how to get involved!

Want to be an author?

It's simple. Write a blog post about what it means to YOU to be a Spoonie. The ups and downs of YOUR Spoonie life. (This is our first topic for the Super Spoonie Story Swap just to help get the network started).

There are no limitations. No minimum or maximum word count. Use words, pictures, videos. We are limited enough by our disease and this is one time for you to be free to say how YOU feel with NO JUDGEMENT. The most important RULE (if you can call it that) is to just be YOU.

Be sure to mention that you are taking part in the SUPER SPOONIES STORY SWAP to help spread the word and help build our Spoonie Blog Network.

Even better put this logo somewhere in your post/blog:

To submit your story please visit the submission page. There's more details/instructions there too!

Things to know about submission:

• Once your entry has been received and processed, a confirmation email will be sent to you.
• This email will also contain a link to your entry as it appears in the Spoonie Blog Network.
• If you are a blogger, anyone who wants to read your submission will always be linked to your own blog. After all it’s YOUR story and this will help introduce others just like you to your own blog and build your own reading community.
• If you are a non-blogger, that's okay. I have a special page on the Spoonie Blog Network just for you. If you decide in the future you would like to start your own blog, just let me know and I will adjust your submission to link back to your new blog!

Want to be a Reader?

Here's where you can find the list of submissions:

 

See an entry to like, just click the link! Read it, enjoy it, comment on it, and even share it. Be sure to let them read your own story too! Feeling inspired? Why not write your own post!

 

Submissions on Topic 1 will be received up until September 30, 2014. This is help me get this project set-up, there will be lots of opportunities to join in later, but hey why not be one of the first!

 

MY LONG TERM GOALS

Please, remember that this is a startup project and the look and feel of the Spoonie Blog Network may (and will likely) change as I learn how to best meet your needs. Afterall, we are building a Spoonie network ONE blog at a time.

Eventually, I want blogs and their post to be easily categorized and searchable. So when you want to read about someone else's experiences with a particular illness or with a certain situation you can easily find it without the hassle of Googling over and over and turning up empty-handed. A one stop place to find the information YOU need.

Each time you write a new blog post. Let me know, and I will add it to the Spoonie Blog Network. It's that simple.


The elephantintherheum.blogspot.ca serves only to organize and centrally locate all links to entries provided during the creation of the Spoonie Blog Network. However, elephantintherheum.blogspot.ca will not be responsible for misinterpretation, misrepresentation of any entries and their associated blogs as outlined in the disclaimer for elephantintherheum.blogspot.ca. If you have any questions/concerns please email: elephantintherheum@gmail.com