Monday, April 30, 2012

Coping, Sort Of

I've entered into yet another string of bad days. The hallmarks of these days are always the same:
-my ability to think goes out the window
-patience runs thinner
-much less gets done
-appetite goes down - nausea goes up
-my mood becomes much darker as if feels like there is no end in sight

These spells do end - I know it in my head - but that does little to help me cope with all the emotional challenges it presents. Often times I find myself escaping into mindless Netflix shows from the semi-comfort of the couch. With the darkening drapes pulled, the sound and brightness turned way down on the TV, I can almost forget how miserable I feel.

Don't get me wrong, I still do get a couple things done on days like this. I'll do some light stretching, my relaxation practices and can even manage a load of laundry or other super light household chore. But mostly all I do is try to avoid focusing on the very squeaky wheel my body becomes. Perhaps there is a better way to actually cope. I just don't know what it is.

Have you found a more effective coping tool for these sorts of times?

Friday, April 27, 2012

Friday Surprise

Have you ever had a Kinder Egg? They are wonderful little gems. It is a hollow milk chocolate egg, with a lining of white chocolate. Inside the chocolate layers is a plastic egg and inside that is a toy. The chocolate is nothing special but the surprise toy inside is a real treasure.

Often these toys required some assembly and some even had moving parts. Once you put them together you were always surprised that a toy that size came out of the small plastic egg.

Over the years since I was first introduced to them they have delighted me. I always had some on hand for when I was having a particularly difficult day because I knew they would delight me.

Unfortunately, the FDA has banned these here in the US so it has been a few years since I've had one. So you can imagine my surprise when I saw the following, suspiciously similar product at the grocery store this week:

The Choco Treasure is the same size, the same concept, even has similar packaging with the multi-colored writing.

The execution is slightly different as the plastic egg slightly larger.

The toy in this particular egg was quite disappointing - a sheet of stickers - not exactly bringing a smile to my face. I'll buy a few more with the hopes that the toys are better in other eggs. It's a fun prospect - to maybe have a version of the Kinder Egg for me to be delighted with on a bad day.

Have you ever had a Kinder Egg or one of these new Choco Treasures?

Thursday, April 26, 2012


The Botox is finally beginning to wear off a bit. The good news is that now my neck muscles can hold up my head long enough for me to wash my face. The bad news is that my neck muscles can now spasm. All in all this round has been terrible and I can't imagine putting myself through it again.

I won't see my migraine doc next until August 1st so I have some respite time here as the Botox continues to work it's way out of my body. No doubt the doc will want to increase my SNRI dose when I do see him but I'm already feeling quite overloaded in the med department so I'm not looking forward to doing that. I feel like there should be a better way than just giving me more and more medication. Often the temptation is to just stop taking all these pills. Have you ever?

What I'd like to do with these next 3 months is see if I can find a place to get acupuncture and continue to work on my "road to wellness" stuff. I just wish there was an answer. I wish I didn't have to do this. I wish my life was normal. I wish I could work.

Okay, enough feeling sorry for myself. This is my lot to deal with and I need to focus on moving forward and doing the best I can. Onward.

Wednesday, April 25, 2012

Thoughts on Beckett

One of my favorite quotes comes from one of my favorite playwrights, Samuel Beckett. It goes: "I can't go on. I must go on. I'll go on." I loved this quote even before chronic pain began attacking my body and I identify with it even more now.

I could expand on it, explain all the times and all the ways this has rung true for my life with chronic pain (heck, for life in general) but Mr. Beckett put it so simply, so perfectly that there really is nothing more to say. His talent for sublime brevity is what I love most about his writings. Of course he wrote like that because he hated words - and I love it because I love words.

Anyway, I've been thinking about this quote lately, which got me thinking about his plays. I hadn't put a whole lot of thought into them in several years. Doing so through the Fibro/Migraine lens of today, I find these works that spoke to me back then seem to speak about me now. Instead of being simply moved by them I feel like I can relate.

If you have never read or seen a Beckett play I would highly recommend it. My favorite is Ohio Impromptu.

Tuesday, April 24, 2012

Disturbing News

If you happened to catch the CBS Evening News last night you may have also caught the disturbing news that social security disability benefits are expected to dry up by the year 2016. Right around the corner.

Despite my efforts to put this out of my mind and focus my attention on the factors in my life I have some control over, worry has crept in. After all 2016 isn't far off assuming the world doesn't come to an end on Dec 21st. The prospect is worrisome for me directly but also for many many others. Can you imagine a world without any safety nets?

This is a big issue, one that I will be paying close attention to in the upcoming election. The question is, will anyone in power being doing the same?

Friday, April 20, 2012

Less Anonymous

My husband had an interesting idea. He suggested that I be less anonymous with my blog.

Of course, the reasons I write anonymously have not changed but his reasoning was sound. He suggested that I could use a picture of me for my profile along with my first name and still be anonymous in the ways that are important to me. I don't want potential future employers to google my name and be able to learn all about my struggles. And I am certain I would edit myself too much if I knew all my family and friends were reading.

Don't really see why I can't use my picture along my first name while maintaining my anonymity. The way I see it, unless I become super famous (which won't happen) then I'll be okay. I've been tossing this idea around in my head for a couple days now and am seriously considering doing it.

What do you think?

Monday, April 16, 2012

A Sad Goodbye

In the early morning hours this past Saturday our precious little dog Lucy got very sick. A few short hours later she died at the emergency pet hospital. This sudden, rapid decline took us by complete surprise and has left a huge void in our family. We've spent the weekend mourning the loss, telling stories about her and just laying around in a combination of grief and shock.

She was such a big part of our lives. She wanted nothing more then for all of us to be together, all the time. Nothing was ever quite right unless the family was together - and nobody else was around. She wasn't crazy about others.
This is Lucy with our first rabbit, Mr. Miranda. She absolutely loved being around him. She would get so excited when Mr Miranda would approach her that she would freeze and have to look away.
Wherever Mr Miranda was, Lucy was never far behind.
And when he would lay down for a reset, she would too.
She loved being comfortable and often found comfort in the oddest positions.
She has been with me day and night since I had to stop working. She followed me around, comforted me was feeling particularly bad, she would lay with me when I needed to lay down, sit with me when I was working on a project...
She was always very protective of me. It was as if she knew how delicate I am and took it upon herself to make sure I was okay.
She was also quite a looker.
I like to think we gave her a great life. After all she had her own person with her all the time. She had two little rabbit brothers, 3 walks a day, regular meals, good health and plenty of comfy spots to sleep.
We loved her - enormously - and we'll always miss her. 

Sunday, April 15, 2012

Patient for a Moment Blog Carnival

The new Patients for a Moment Blog Carnival is up. The topic this time: Who Are You Without Your Disease. There are lots of great posts to enjoy so check it out!

Wednesday, April 11, 2012

For Cute Sake

Here is another oh-so-cute video of my sweet bunny Rupert - just for smiles.

Tuesday, April 10, 2012

I Am

Living with chronic pain has changed all aspects of my life. Back in the day I would have described myself as creative, caring, active, energetic, dedicated, professional, animal lover and social. Six years into my Chronic Migraines and Fibromyalgia I am no longer able to do many of the things I used to love doing like directing theatre, working full time as a social worker, painting and drawing. Despite not being able to do these things I still retain some of those descriptors and have even added some. Today I would describe myself as creative, caring, dedicated, social, animal lover, blogger, wife and homemaker.

With some modifications I've been able to continue doing many things I used to love doing. The brain fog and trouble concentrating have slowed down my book reading. But I do still read books, just not nearly as quickly. Exercising is something I'm still able to do even though I can no longer work out as vigorously as I once did. I still walk, stretch, lift light weights and do gentle yoga. Even though I have lost my creative impulses that got me painting and drawing I am still able to be creative. Now my creativity is focused on more domestic projects like cooking/baking, designing, saving money and living the best I can.

The thing is, I'm still a person. I still want the best life I can have. I experience the whole spectrum of emotions and thoughts. I am me. Life with chronic pain has impacted the person I am by drastically impacting the way I live my life. But that can be said about other big life events like getting married, having kids, moving, etc. I am not just Migraines and Fibromyalgia but they are part of me.

Monday, April 9, 2012

Headache Blog Carnival

The April edition of the Headache and Migraine Blog Carnival is now available. This month's topic is Building and Maintaining Hope.

Check out these great posts on this very important topic.

Friday, April 6, 2012

A Big Move

An unexpected move is on the horizon. My husband and I have been given the opportunity to move into a place super cheap. It is a property that his family owns and don't want to sell until the market picks up. Instead of sitting empty we're going to move in. It will be a little more space than we have and a lot cheaper than what we pay now. This will give us the perfect opportunity to save more money for purchasing a place down the road.

Saving money is on at the top of my list of favorite things and feels especially good as this time of year is VERY expensive with medical bills, our dog's yearly vet bills, new tires for the car (ouch) and an upcoming drive to Minnesota. To say that this will help us out, would be a huge understatement.

We don't have a set move date but it will slowly start happening right away. There is lots to do to prepare and it will all have to be done slowly. The place needs to be painted, the carpets need to be cleaned and then we can start slowly moving things over. The next couple of months promise to be quite busy. This will be a good test of some of my new pacing skills. Let's see if I can keep myself from overdoing it.

Wednesday, April 4, 2012

I Deserve Some Blame

People often don't get it. They don't understand chronic migraines, fibromyalgia or what it's like to live with these conditions. Of course, how could they without experiencing it? Heck sometimes I don't even fully understand it. These well meaning people often don't know what to say or how to react. Instead of asking questions or saying something supportive they often say things like "well you look fine", "you just need to get out more" or one of hundreds of other dismissive, blaming, discouraging or hurtful things. Unintentional or not it's quite frustrating.

On more than one occasion I've considered distributing a prewritten statement of sorts explaining things but have never actually followed through. Then it occurred to me, some of the blame is on me. I've made the conscious decision to NOT share much of the ugliness with them.

My family and friends know many of my stats like I average 18 migraines/months, it's been going on for 6 years, I haven't been able to work, etc. They all know I have this anonymous blog and why. When they inquire about how things are going I tend to be honest but smile, skip over the details and change the subject.

As much as part of me wishes they could understand I know understanding can't be achieved over dinner. My life these days is pretty complicated and my migraine/fibro foggy brain doesn't exactly make explaining these complexities easy. Besides understanding isn't necessarily what they are seeking with their inquiries.  

My family, friends and I may all be guilty of avoiding these unpleasantries in most social situations. They don't know what to say or do, and I just want to enjoy myself and try to feel as normal as possible even if only for a short time.

At times, when I don't feel like it (I rarely feel like it), I'll get dressed, put on makeup, go out, sit up straight, smile and converse. What they see very closely resembles the me they have always known and so that's how they treat me. Honestly, I LOVE the way that feels - it almost makes me feel like the old me.

So as frustrating as it can be that people don't get it, I know I deserve some of the blame. My hope is that from now on I won't get so frustrated by these comments but rather learn to enjoy the charade being played.