Wednesday, October 7, 2015

So I Did A Thing...

Britt at @HurtBlogger came up with a really good idea at the beginning of the year. She was looking for a good way to get the word out about the realities of people living with RA. What started out as the hashtag #ChronicLife soon encompassed not only people with RA but more patient communities than probably anyone thought would play along. At the end of her 48 hour live tweet the hashtag was trending and a lot of patients were tweeting about what it was like to live as a chronic patient.

I'm guessing you're wondering why I'm sharing this with you, here's why...last week on Thursday and Friday I did my own #ChronicLife live tweet for 48 hours (Britt encourages this and if you give her a heads up she will pop in and tweet every once in awhile too).

When I started tweeting I had just broken another tooth thanks to dry mouth and Sjogren's so I knew I was already starting off with a bang. I tweeted through out the day along with @mommahsmusings (Mommah and I were doing this one together, it was her idea to do this during Invisible Illness Week to raise awareness for both). When I hit the 24 hour mark I felt pretty much as if I had whined the whole day. Some tweets were a big deal but others not so much, still I thought how many people want to read about my health all day?

So the next day I got up and decided that I needed to be more positive in what I was tweeting. I often think this is why so many people don't know the truth about Chronic Illness and Pain, we're too busy trying to cover things up to make it palatable for "normals" because if we don't want to listen to it can you imagine how a "normal" feels about it? Still that isn't right, so I continued to tweet.

By the middle of the day on Friday I had a sneaking suspicion that the person that I hadn't been honest about my health with was me and it wasn't a pleasant surprise. I had participated in the first #ChronicLife tweet but a lot of that was replying to other tweets and encouraging them as much as I could (a whole different ballgame). Now this tweet that I was doing was all about me.

When the clock hit midnight I felt thankful to be done and that I had hung in there to finish (posting was less frequent in the later hours of the day). I felt I had accomplished my goal and planned on Storifying my #ChronicLife the next day.

I was very surprised to wake up the next day in a serious funk. How could I have this much going on and be walking around telling everyone that my meds had me pretty well under control when my EDS, TMJ, Sjogren's and Raynaud's were all acting up?

When I started to pull tweets for Storifying I got an idea that maybe I wasn't quite as well controlled as I like to think I am. It was a rude awakening and I wasn't quite ready to deal with anything less than good news, after all I'm also recovering from my 3rd foot fusion surgery (pray for bone). Add on the fact that I have fallen 3 times this week and yeah, problems...I got 'em. I'm starting to break down issues and when and how they will be handled and if I can double dip with a few.

So while I thought it would be good to raise awareness in the community, I really had no idea that I would also raise a little self awareness too. I guess I need to find a way to be more aware of what's happening with my body without becoming a hypochondriac too. I've decided I'm going to back to journaling again. I tried this over the summer and I was really surprised to see tracking my pain and sore joints gave me a really good idea what to address with my Rheum. I also use Arthritis Power to track my pain and other issues but I never make the time to get in there every week and update, this needs to become a priority. If you haven't heard of it and want to give it a try, Go check out CreakyJoints they will point you in the right direction to sign up.

I'm glad that I have ways to keep myself aware of what is happening with my body. It seems that I have distanced myself from my body for a bit too long. It will be good to get back in touch and keep updated in a healthy way (one that hopefully won't turn me into a hypochondriac at some point).

Do you track your symptoms and pain? If so, how and where do you do that?

Oh, and if you want to check out my Storify for my #ChronicLife Live tweet, here's where you can. Happy Reading. One last thing, if you want to follow me on Twitter here's where you can.


PotentiALZ- Expressive Art for Alzheimers and Dementia said...

So I posted a long comment, and as luck would have it- poof- it disappeared. Let's retry. 1st bravo on explaining the fine balance (any such thing) of stating our symptoms without sounding like we are complaining. I try real hard to be positive and to communicate properly to my loved ones, and to be supportive to others in the RA community. I have found for me, I need to track my symptoms manually, as I am a "out of sight, out of mind" kind of girl (thanks brain fog). When I see my journal, it reminds me to write a quick blip- vs an app that I don't see. I also find on my more difficult days its easier to remember to track because we aren't feeling well. I need to be more faithful on my better days so I have a better idea when I go to appointments for comparison. I also want to say thank you to #chronicLife as I am a Twitter newbie, and being welcomed in to the family. I am finding great support and I am learning to connect my Alter Ego's name (no rheum for arthritis) with my name (Mary Alice ) as a sufferer of RA & Crohns when I communicate in cyberworld. Someone said yesterday "I thought no rheum for arthritis was a page not a person". No, I am a very real with person with unfortunate diagnosis, who chooses to take that and bring awareness! :-)

Mary Alice Landry said...

So yeah, I still don't get get Google blogger as my old work profile came up on the above post. I am learning one day at a time ! lol Mary Alice (no rheum)