Sunday, August 31, 2014

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.

Thursday, August 28, 2014

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.

Wednesday, August 27, 2014

Whimsy Wednesday

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

Monday, August 25, 2014

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. 

Friday, August 22, 2014

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. 

Wednesday, August 20, 2014

Whimsy Wednesday

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

Tuesday, August 19, 2014

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 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.

Monday, August 18, 2014

Starting a New Project, Slowly

The past 5 days have been odd. As much as I've craved composing a blog post, I just wasn't in the right frame of mind. It all started on Wednesday when our sweet little chihuahua, Gypsy, had to have a few teeth pulled. Doesn't sound like much but dental work on dogs always involves anesthesia. Wednesday, Thursday and even Friday were pretty tough for her so I wasn't able to get a whole lot done besides attending to her needs.

I had hoped to start painting this old antique wash stand over the weekend. On Friday afternoon, I took it apart cleaned it up and got all my supplies together.

Gypsy oversaw all the prep work, uncomfortable letting me out of her sight.

The only progress I actually made over the weekend was getting the inside of the drawers painted. Hubby and I ended up working on some other projects together, including moving a couple pieces of furniture, taking naps, and watching Netflix. The whole weekend was rainy or overcast so it was prime napping/cuddle weather. Plus Gypsy still wasn't feeling 100% so she appreciated the extra attention.

Now the plan for the week is to get that painting project going. I hope to have it all done and ready to be used by the end of the month. My chronic migraine and fibromyalgia have me moving at such a glacial pace, these small projects always take so long.

Wednesday, August 13, 2014

Whimsy Wednesday

If you are a House of Cards fan you are going to love Jimmy Fallon's spoof of it. And if you are not a House of Cards fan you ought to be. Check out part one and part two of this very funny bit.

Tuesday, August 12, 2014

Talking About Depression After Robin William's Death

The suicide of Robin Williams has produced two big responses. First, everyone is saddened by the loss of such a talented and funny man. Second, people are talking about the struggles he had with addiction and depression, which lead to his untimely death. As awful as this is, I'm so glad that it has sparked so much conversation about depression.

Far too many people still don't believe it's real. They blame those who are suffering; deciding they are weak, looking for attention, or just feeling sorry for themselves. Nothing could be further from the truth. Unfortunately, the world is not sympathetic to mental illness and everyone who has been impacted by it is well aware of this. That's why seeking treatment is so scary and getting better so much more difficult. 

Can you imagine the impact Hollywood could have on breaking stereotypes and educating people about the reality of mental illness in general by simply being open and forthcoming about all of their struggles. I bet depression is much more common in Hollywood than we know, just as it is much more common in our own circles than we know. Can't imagine this would ever actually happen, after all Hollywood all about creating an idealized fantasy world. 

I guess the best we can hope for is that over time the world will become a more enlightened and understanding place, where people can get all the support and help they need to better cope with whatever mental illness is plaguing them. In the meantime, let's do all we can to help support those around us who may be struggling. 

The chronic pain community is very vulnerable to depression and something I imagine we all struggle with to some degree from time to time. I know I have. 

Monday, August 11, 2014

9 Days into a Migraine and Counting

Now 9 days into a migraine stretch I feel myself on the brink of moving from coping to feeling tortured and panicked, which always happens on day 10. I can count on one hand the number of things I've managed to accomplish during this time and still have fingers left over. Those remaining fingers are crossed that the pain will resolve today and I won't have to face that horrible 10th day and beyond. 

Just in case it doesn't, I'm gearing up. As strange as it seems, I'm quite aware of how hard it is to deal with a migraine that goes on for more than 9 days. I'm not exactly capable of doing a whole lot to prepare but I am going to prioritize cooking a big dish for dinner tonight so there will be leftovers tomorrow and making sure I have all my meds, pillows, blankets and comfy clothes at the ready. 

A long stretch of migraine pain always gets me feeling annoyed with my body. What about the things I need to do? What about the things I want to do? What about my sanity? I'm pretty sure my chronic migraines and fibromyalgia just don't care about me. 

Thursday, August 7, 2014

Online Security Concerns

I've been thinking a lot about online security over the past several weeks, prompted by a request from a company to help them find people with migraines to try their app designed to help track symptoms and share information with our doctors.

I was reluctant because clearly online security isn't very secure. Major corporations, spending vast amounts of money, can't keep our credit card information secure. People can hack into our devices and activate our video cameras, watching and recording us. People can hack into our computers and record all of our keystrokes so even if the sites we visit are secure our info can still be taken. Even with firewalls and anti-virus software we are still vulnerable to cyber attacks. Especially on our mobile devices, which these days people use just as much as home computers.

It was on my mind and I was trying to decide if there was any way I could feel comfortable with the idea of putting my personal demographic information along with my specific medical information out into the vast cyber universe, giving up any kind of real control over what happens to it, when along comes the latest hacking story. Hopefully you saw this story. As you can imagine, I decided I couldn't bring myself to do it. I can just as easily keep track of things on my own, then control exactly who gets to see it. Sometimes the old-fashioned way of doing things is the best way.

When it comes down to it, nothing online will ever really be secure. All the passwords and encrypting that is done on websites is basically just a speed bump to a clever, determined hacker, giving us all a false sense of security. I probably will never be the kind of person who disconnects completely because I benefit greatly from being online, but I will always be very careful about what I do and what I share.

Wednesday, August 6, 2014

Whimsy Wednesday

Love The Big Bang Theory and even more I love the relationship between Sheldon and Amy. Here's a great scene for your enjoyment on this Wednesday.

Have a great day!

Tuesday, August 5, 2014

An Interesting View of Wellness and Disease

The title of this Ted Talk may sound like it has nothing to do with chronic migraines, fibromyalgia or other chronic pain conditions but when you watch you will see how it may actually be related. If nothing else it is an interesting take on wellness and disease and a possible contributing factor that isn't often talked about or treated.

Monday, August 4, 2014

Not Enough Spoons For Everything I Need And Want To Do

The summer has completely gotten away from me. How is it already the 4th of August?

The thing is, it's not just that time that has flown by, it's that I've not been doing a good job managing my chronic migraines and fibromyalgia this summer. I think it has been such a challenge because, for the first time, I'm having to manage both a house and a social life.

We did own a home in the early days of my chronic pain but we lived very far away from all our friends and family. Plus we knew we were not going to be living there long so we didn't invest much time and energy into making it our own. Since moving to the St Louis area a few years ago we have had a busier social life because here we live near a bunch of family and hubby has old friends who are still here.

Now that we are settling into our new home and life is normalizing (for lack of a better word) I'm finding the increase in demand on my time, energy and attention is making managing my symptoms more difficult. Right now we are battling to help our new sod take roots while trying to protect it from the weeds that surround our property on 2 sides and the moles that are trying to destroy it. We are trying to protect our house, ourselves and our pets from spiders, ticks, mice and other insects. We are still doing the things that need to be done to a house that aren't included in new construction like building storage shelves and organization solutions in the basement and garage. We are trying to plan for how to use our outdoor space and indoor space. I'm thinking about interior design and getting the rooms painted. We need to decide about a water softener soon and seal our driveway. The list goes on and on.

Plus, now I have a friend right next door. She had the summer off since she works as a teacher so we got to hang out and she helped me figure some stuff out around the house.

All of this is positive stuff and much of it will only need to be done once, especially the house stuff, but it may take us another year or more before all of the new house stuff is done. Even so, home-ownership really means that there will always be things popping up and demanding our attention. I really need to figure out how to better balance all this new stuff that I need to do and still have the energy to socialize.

I've decided to take the rest of the month of August off from socializing in hopes that I can break this cycle of symptom flaring that I've been in all summer. Hubby has a few weeks off before he starts taking some college courses in the evenings and we have a few things that we need to get done around the house, including spending some time together, before most of his spare time will be spent doing homework and studying. Hopefully in this time I can also figure out how to move forward in a healthier way. I simply don't have enough spoons for everything I need and want to do. I'm not yet sure what to do about it.