Trying A New Strategy For Balancing My Activity Level

Early on in August I wrote about coming to the realization that I was stretching myself thin too often between the additional tasks involved in home-ownership and the increased social opportunities. My body wasn't able to handle all the things I needed to do AND the things I wanted to do so I decided to take the month of August off from social engagements.

I spent the month pondering how to better balance my additional responsibilities with my desire to spend time with family and friends. Working with such limited amount of time that I feel up to participating in social activities and limited energy to spend on any activities I just wasn't sure how to move forward in a healthier way.

Then it hit me; start small and simple. Now that August is coming to a close, I'm going to start by limiting myself to no more than one social engagement a week. I think I can accomplish two things by doing this:
1. I will have a rule to follow that will help keep me focused on taking care of myself, which will prevent unnecessary flare-ups, increases in really bad days and overall just feeling worse.
2. Once I've communicated this simple new plan, everyone in my life might be able to set their expectations of me so when I have to decline an invitation they will understand why. At least, that's what I'm going to tell myself so I don't feel so bad when I have to say no.

I see this as a jumping off point. I'll give it a try through the end of the year and see if it has been helpful or not. If not then I can make changes.

3 Reasons The Ice Bucket Challenge Bothers Me

Ice Bucket Challenge

Three simple words that have exploded over the past month or so. You can't watch TV, look at Facebook or Twitter without seeing a video of someone pouring a bucket of ice water on their head. The exploding popularity of this movement kind of bothers me. I don't have any problems with raising money or awareness for ALS. So what's my problem?

Well, I guess it boils down to three basic issues.

1. I sort of feel like it has become a fad, something people are doing because it's the popular thing to do, celebrities are doing it and to draw attention to themselves instead of to ALS. I haven't seen any Ice Bucket Challenge (IBC) videos of people talking about ALS, how the disease impacts people, the research being done or even giving information about how to donate. Do people really know more about the disease now or are we just aware that ALS is associated with the IBC? For me it's the latter.

2. I am a little uncomfortable with blindly giving money to an organization that has NOT been vetted. I am not familiar with the ALS Association. I don't know what percentage of every Dollar goes to research, or to direct services for those suffering, or to salaries and overhead. Frankly, I am not even interested in finding out simply because my scarce energy reserves will be spent on Migraine and Fibromyalgia groups. I guess I think the IBC would be much improved if participants were raising money for charities of their choosing. This could be a great way to encourage people to get involved in something they are passionate about and give to organizations that are behaving responsibly. Consumer Reports has some great advice for vetting charities.

3. I am not crazy about the IBC in general. I get that it's fun to see the reactions of people who have just had really cold water dumped on them. But there are people who are getting hurt by the challenge. I've seen video of people falling off chairs while trying to lift heavy buckets and dropping heavy water filled buckets on heads. Even if everything went as planned, the thought of all those ice cubes hitting a head doesn't seem like a great idea (this might just be the reaction of a person whose head ALWAYS hurts anyway). Plus, seems like ice cold water on the head could be bad for some people.

I don't mean to be a kill joy, wet blanket, big bummer, stick in the mud, grouchy sick woman or anything like that - though I sort of feel like one because it seems everyone else is into it - but the longer this goes on and the more I see everyone and their kids (literally little kids) doing it the more it is bothering me. Obviously, it is only a matter of time before the public at large loses interest. I just hope it happens sooner than later.

Whimsy Wednesday

Pets are a constant source of comedy - what a treasure. 
Have a great day!

Crochet project goes awry, leads to frustration and tears

My cousin is having a baby. I got the invitation to the shower months ago along with the web address to their baby registry. Not wanting to get anything off the registry I decided to crochet a baby blanket for them. I coordinated with mom-to-be to make sure the yarn I was going to use would work with the nursery. I then set about creating the blanket - stitch by stitch - hour after hour - month after month. As I sat stitching I thought about the baby and wondered who he would be and how this would change their lives. It was relaxing and fun. 

Just last night, I stitched the final stitch. With just a few short weeks until she is due I was excited to put the finishing touches on and get it wrapped up and in the mail - wanting it to arrive before the baby. I laid the blanket out under a light to smooth out the transitions only to discover that something had gone terribly wrong. One of the skeins was a slightly different shade.

You can see the top 5 inches or so is darker 

I could just cry.

The yarn we picked had NO dye lot so it should have all been uniform. I check, double checked and triple checked to make sure that each skein had the same numbers on it. They were all the same, or they should have been. I honestly don't know what happened. I will be placing an angry call to the company later this morning to complain but that won't change anything. Ultimately, the blanket is ruined and there is no way to fix it. I will simply have to start again. 


Still full of the frustration and disappointment over having something I worked on for so long be ruined, I will need wait a week or so before I start again. It will be late but at least it will be right. On the upside, Gypsy did need a small blanket to put inside her crate so at least it will have a use. 

3 Simple Things To Do For The Chronically Ill People In Your Life

Over the years I've come to believe that nobody can ever really understand an experience unless they have gone through it. This absolutely holds true when speaking about living with chronic illness/pain.

No amount of explanation, witnessing or understanding of the various symptoms can tell the whole picture. Further complicating matters, no two people with the same ailment will experience it the exact same way. The variables are simply too numerous. 

The best we can hope for from others is that they do these 3 simple things:

1. That they believe us when we tell them what we are going through. We are not exaggerating or making things up. If anything we are minimizing the ugliness.

2. That they are patient and kind to us when we are struggling like when we have to cancel plans, leave early, struggle to find our words, need to avoid big triggers, etc.

3. That they ask questions and say supportive things instead of blaming, shaming or dismissing us. 

Whimsy Wednesday

Here is a very funny SNL spoof of the movie Her for your enjoyment. 
Have a great day!

Being A Chronic Pain Misfit

I often feel like a misfit. A big part of that is due to the drastic changes that have resulted from years of living with chronic migraines and fibromyalgia. I think I am the only person in my family and among my friends who finds the very idea of a beach vacation repulsive. All that bright sunshine like daggers from above as well as reflecting off the water, the inescapable discomfort of the heat and the mind numbing boredom that sets in after about 5 minutes of sitting on the beach...no thanks. I don't go to games, festivals or concerts because they are too loud, too bright, too crowded, too full of triggers. I can't be social day after day. I can't drink. I can't work. Exhaustion can set in after just a short bit of activity or sometimes for no apparent reason at all. Things that shouldn't cause pain, do. My brain can give out on me without notice.

Yep. Chronic pain sure does play a big role in making me feel like a misfit but it's not the only contributing factor. Even when I was healthy I was a bit odd. I enjoyed things my peers did not. Most people didn't get my sense of humor. I had an internal world of ideas and imagination that most people just were not interested in. At times my thoughts would take over and seriously slow me down.

All of these things are still true now. Add in the chronic pain stuff and, well, you can see why I feel like a misfit. I am. The person I am runs contrary to the culture, time and place where I exist. I don't mean this as a complaint, just an observation.

Sure I can pretend to be normal (whatever that is) when I'm out in the world. However, the older I get the more I feel disingenuous when pretending. Maybe those around me feel it too, I don't know. Maybe part of the problem is that I'm also pretending to be healthy when I'm out in the world. Perhaps I am just getting too old and too tired for these games. I guess when it comes down to it, feeling like I fit into a group matters less and less to me each year. Life is more complicated than that and who I am, oddities and all, is okay. I don't have much energy in general, certainly not enough for people who would judge me harshly for who I am.