Tweeting

I finally set up a Twitter account after much thought and consideration. I don't know that I have it entirely figured out but I'm having some fun exploring. It's only been a couple of days but it has already inspired me to start thinking about creating a cartoon image of myself to replace my tuberose picture that I'm currently using for everything (blog, chronicbabe profile and now twitter).

Since deciding not to change my blog name to include my Fibro diagnosis I'm feeling a renewed sense of commitment to Migrainista. I guess this is sort of a result of that.

Are any of you on Twitter? I would love to follow you if you are.

Struggling to Relax

I'm struggling a little with the relaxation. When I first started doing it I found it pretty relaxing though I could tell that progress needed to be made with the deep breathing. Over the last few days I've noticed that every time I sit or lay to do my relaxation CDs one of two things happen. Either I am able to focus on my breathing and the imagery and such, get sleepy and fall asleep, or I find myself unable to focus, my mind just wandering from topic to topic.

This has been pretty frustrating. Part of me thinks I should try doing my relaxation stuff in the morning instead of the afternoon as I currently do but my mornings are usually pretty busy. Maybe I should get more relaxation CDs so I can have more variety to keep me more engaged. Part of me wonders if this is just the challenge of everybody who is new to doing relaxation techniques.

Have any of you struggled like this when trying to practice relaxation techniques? Any suggestions for me?

Novelty as Pleasure

I recently saw something on TV, where research was showing that the brain actually interprets novelty as pleasure. If you enjoy taking a walk, you will enjoy it more if you are not always walking the same path. If you enjoy going out for dinner, doing so with different people or going to different places will be more pleasurable. This is an interesting concept.

I tend to be a fairly habitual person but I do notice that I also tend to get sick of doing the same thing over and over. I love playing boggle with my husband but if we play too frequently I will get so sick of it that I won't want to play for months. I guess I never gave it much thought but I suppose I ought to.

Since the onset of chronic pain has forced me out of doing many of the things I used to do I think I have gotten myself into even more of a rut. In the past I have avoided doing many things. More recently I have learned that I can't entirely avoid everything and have made real strides to be more active and take more chances. But still my initial reaction to suggestions is no, I can't or I don't want to. Usually, if I do it anyway, I wind up enjoying myself and being glad I rallied.

Perhaps I should put more effort into planning ahead to do something different at least 4 times a month. We live in a new area and there is so much here to explore. It should be easy to find things to do. Today I'll spend some time making a list of things we can do.

Even as I'm writing about doing this, I'm getting excited about having some new experiences and exploring the St Louis area. Do you have a favorite thing to do? Are you more habitual or spontaneous?

Sleepy

I've been able to keep up the new exercise and relaxation program for more than a week now. It's a lot harder on the weekend days because my husband is home and we try to coordinate our activities. We finally had a chance to sit down and talk about all this new fibro stuff on Saturday and he on board with the program now too. I think this will make it easier for me to do what I need to do.

I've just recently increased my dose of Cymbalta as I continue to titrate to the prescribed dose. This increase has made me much sleepier. I'm finding it difficult to function, especially when sitting still like today when I drove to my husband's grandma's house, which is 30 miles. By the time I had arrived I probably shouldn't have been on the road because I was so sleepy. But, of course, I had to drive home. Yikes. Obviously I made it home safe but I'm still very sleepy and have a migraine coming on.

I know this is a side effect that will get better with time. Perhaps I'll just need to stick a little closer to home in the meantime.

Starting on the Path to Wellness

The self management tools I learned about at Mayo were all about pacing, moderation and balance. All of the concepts sound obvious and rather simple; it is about all the little things I already knew I should be doing (and sometimes do) but not enough and not consistently.

I'm a bit of a perfectionist, a type A personality. I tend to want to control things. Apparently this is a common trait among people with Fibromyalgia and plays a big part in why doing these simple self-management things can be challenging. Even today, armed with the knowledge and committed to implementation of these techniques, I find myself wishing I didn't have to make any changes, wishing I could just return to my life as it was before chronic pain robbed me of so much.

Making real change is going to be difficult here. It is going to require me to make myself a priority, have uncomfortable conversations with the people in my life to educate them about my needs and I will need to figure out exactly what I'm capable of and really change my life to fit my new parameters; and then stick to it.

So here it is: this is a list of the components that I will need to add and/or modify to help bring my life and pain into balance and control.

1. Relaxation
2. Decrease symptom focused behaviors
3. Stress management
4. Moderation
5. Positive thinking
6. Communication
7. Humor
8. Leisure/Fun
9. Spirituality
10. Exercise
11. Nutrition
12. Sleep Hygiene

In order to be successful I've decided to tackle the two areas that I feel will be easiest to implement. Then once they begin to become habit I will add an additional component and so on. I picked relaxation and exercise first.

Relaxation: I chose to tackle relaxation first for two reasons. First, a study was done with Fibro patients that showed by simply doing 20 minutes of relaxation/day for a period of several weeks by itself was enough to lower their experience of pain. The more they did and the longer, the more the benefit as compared with a group that did it inconsistently and for less than 20 minutes. The second reason was that I received several relaxation CDs in the class that made getting started easy.
My commitment is 30 minutes/once a day for the first month. Then slowly increasing to 20 minutes/twice a day.

Exercise: I also chose to tackle exercise first because it was something that I had already been doing before we moved across the country. What I learned was that this is something that really needs to be done daily, even if the exercise is simply gentle stretches. I received a couple DVDs and several handouts on the types of gentle exercises that are good for Fibro patients during the class as well. I'm finding that between walking the dog and doing some of these gentle exercises that this is going to be doable for me. And honestly, when I was having all that neck pain during my trip I immediately started doing some of the gentle stretches that I learned in class and found that there was some immediate short term benefit when I did them. I was told that doing the exercises regularly over the long-term I can expect to have more benefit.

My commitment is to start slow with 10-20 minutes daily for the first month, then increase to 30 minutes/daily.

I will document my progress here and tell you more as I continue to implement more of these strategies.

What Are Your Thoughts?

I've been thinking about my blog title and online identity of Migrainista. When I started this blog in January of 2010 all I knew for sure was that I had chronic intractable migraines and were not getting any better despite years of trying medications and such. The name fit because I was trying to figure out how to live the best life I could despite my migraines. Today the migraines are still as out of control as ever but I now know that I also have Fibromyalgia and some other issues commonly associated with the two (anxiety, depression, etc).

Today I can't help but wonder if the name just doesn't work any longer. I've tossed around the idea of changing the title of my blog to Fibromygrainista but don't know if that's such a good idea. On the one had I would like the title to more accurately reflect my experiences and my blog content. On the other hand I've spent the past year and nine months building my Migrainista blog.

What are your thoughts?

Still To Come

I've been trying to do a post on the self-management strategies that I learned during the Fibro class at Mayo earlier this month. Obviously it hasn't happened. I've barely managed to even get up and do the basics (shower, put dishes in the dishwasher, heat up some food). There just hasn't been any energy or ability beyond that.

My migraines have absolutely kicked my butt. The pain has been exhausting and I just haven't been able to even bring my thoughts together enough to do this kind of a post. Eventually I know I'll have a better day and will finally get it up.

In the meantime I'm distracting myself with the new fall season of shows, looking longingly at the book I want to start reading but can't because of the brain fog, fatigue and my eye pain from the constant migraine.