What To Do?

My biofeedback doc asked me a question today that sort of reframed things for me. She asked how often I go out and do something fun for myself. I do things I enjoy, but they are almost always at home because going out is often so taxing. I realized that when I have energy and feel up to doing stuff, usually that energy is spent doing stuff around the house, going to visit family or doing something with my husband.

With so much that goes undone during all the time I'm not feeling up to doing anything, I feel like I should my "available" time getting them done. Since my Botox injections have made doing much of the biowork difficult she suggested I use the next couple of months to do some things outside the home just for pleasure. The ultimate goal being to destress a bit, sort of bring down all my inner tensions, which may help to bring down my muscular tensions.

Worth a try. I've certainly tried many less pleasant and costly things to feel better.

Now I just need to figure out what to do. Any suggestions?

Mad Women

I'm totally into Mad Men. Having discovered just today that AMC.com is going to allow me to watch the first new episode on their website has made my day. We don't have cable so normally we have to wait for Mad Men to come out on Netflix before we can get caught up.

The website wasn't necessarily saying that they are going to carry all the new episodes online but for sure this first episode of season 5 is now available and I can hardly wait for my husband to get home so we can watch it together.

I'm a huge fan and I'm sure for many of the same reasons everyone else seems to be. I love the complicated characters, the time period, all the beautiful costumes and especially the women.

Different parts of me, at various times in my life, can relate to parts of these women on some level. Such formality would drive me crazy in real life but I love watching it. If I could figure out how to do it I would love to have Betty's hair style.

Are you watching? Do you love it too?

Just Do It

For four months now I've been avoiding making my yearly female check up appointment. My primary doc gave me the name of someone she recommends and I've fully intended to make that appointment, it just hasn't happened. I've never done this before. I've never avoided taking care of my business like this.

While I'm not entirely sure why I've done this I do have a couple theories. Part of me is pretty darn sick and tired of going to doctor appointments, taking pills, being poked, etc. Another part of me has a pretty sour taste in my mouth from my previous OB/GYN doc. Another part of me just feels so overwhelmed right now by fatigue and everything else that's been going on with my migraines and fibro.

Yeah, yeah, yeah...

Enough with the excuses. I need to just do it. It won't take much time. It won't hurt. It isn't a big deal. And when the appointment arrives I'll go and deal with it just fine.

Have you ever done this?

Dreaded Taxes

Normally I look forward to my weekends because no matter what is going on at least my husband is off work and we can spend more time together. This weekend is the one weekend each year I sort of dread - for this is the weekend we're going to do our taxes.

Doing taxes always puts me in such a bad mood.

This year promises to be a little more complicated because we lived in Virginia the first half of the year and in Missouri the second half. Between moving and my medical expenses I'm hoping we'll get some return, but one never knows.

Topping it off is an earlier than normal appointment first thing Monday morning. I'm moving SO SLOW these days I won't be able to shower before. I hate going anywhere without a shower but I need to go to the appointment to get my refills...such is life.

This is sort of a negative post so let me end on a high note - it's been a little cooler and cloudy the past couple days. I love weather like this :)

Welcome Spring!

Spring has certainly arrived. The flowering trees are in bloom, the grass and trees are all turning a brilliant green, we're getting all kinds of rain and the weather is now consistently warmish. I've gotten all my summer clothes out and am about as ready as can be for the coming summer.

I love this time of year, almost as much as I love fall. The only real bummer is that instead of going into winter, we're going into summer - a rather brutal time of year for this migrainista. This year I'm focusing on doing some indoor growing of edible greens for our sweet little rabbit. I bet we can save some money if I can grow most of his greens.

Other than the growing I am going to attempt to strip and refinish a small table this spring. I don't know if I'll be able to make it work between my headaches, my lack of back neck muscles and the increasingly warm temps but I'll try to make it happen.

What are you plans for this Spring season?

Something To Hold On To

Things are returning to normal around here after a great visit with my mom. While she was here I prioritized spending my energy with her and things around the house waited for me. My fatigue and such have been worse since the Botox I got last week so I've been moving slower than usual.

I continue to be surprised at how different this round of Botox has been than the last. The pain from the injections is still present though it is starting to go down, or I'm starting to adjust to it - who knows. The back of my neck is now completely useless so I've had to adjust the way I do things. The hardest thing to do now is wash my face. I simply can't hold my head up and I can't seem to find a good way to wash it at the sink. Perhaps I'll have to start washing it in the shower.

My eye brows are still drooping but at least the entire brow is now low instead of just the inside. Much better than the angry look I had initially.

I actually feel a little more hopeful that the Botox will impact my migraines this time around because it has been so different from my previous round. Maybe it's just wishful thinking, but a migrainista needs something to hold on to, right?

TGIF

My mom is coming down for a long weekend today. I'm really looking forward to seeing her, of course, hoping that I feel well enough to really enjoy visiting. Since the Botox on Monday I haven't been entirely myself so my fingers are crossed extra hard.

I'm not going overboard on the cleaning and such like I did the other weekend - but am slowly doing a couple things to get ready. Slowly, slowly, slowly doing JUST A COUPLE small things. Keeping myself in check here has been aided by the extra fatigue I've had lately.

What will you be doing this weekend?

The Waiting Room Game

Waiting rooms come in all shapes and sizes. Some have old magazines. Some have dirty toys for kids to play with. Some have TVs. Some always seem to be over crowded. Some have comfortable seating and others not so much. Some have medical brochures. Some are decorated in a soothing fashion. Some are quite plain and cold. They are ALL overly lit. You get the picture - heck, much like me, you've probably seen more than your fair share of waiting rooms too.

The thing is, no matter how much or how little thought has been put into patient comfort, the most annoying thing about a waiting room are the other people. I don't want to be stared at. I don't want to listen to kids screaming. I don't want to sit anywhere near someone who has a cold or flu. I don't want to listen to some rude person talking loudly on their cell phone. I don't want to smell cigarette smoke wafting off the hair and clothes of others. I don't want to worry about what the crazy person, who is talking to him/herself, will do next. And I certainly don't want to talk to ANYBODY.

I just want to be left alone. Is that too much to ask?

Here are some of the things I try to remember whenever I go to a doctor's office to encourage those around me to leave me alone:

1. Pretend to sleep
2. Pretend to read (I often can't concentrate in a waiting room enough to actually read)
3. Pretend to listen to music (this only works for short times as earphones become painful)
4. Look annoyed and unfriendly
5. Try to never look anyone in the eye

How do you feel about waiting rooms? Do you have any tricks to help you cope with them?

A Good Laugh

Just recently watched something that made me laugh out loud even though I was alone watching it (rare for me). Those who have watched Late Night With Conan O'brien will likely recognize Triumph The Insult Comic Dog, well Netflix recently made the best of Triumph available streaming instantly - SOOO FUNNY!!!

This is going in my Need-a-Laugh Toolbox.

Botox - 2nd Round

I just had my 2nd round of Botox today. Unfortunately, since it's been a couple months since my first round wore off my doc thinks I'll basically be starting over. Not a huge deal, I guess. Mostly I'm just really looking forward to giving my overly tense head, neck and shoulder muscles a chance to relax and hopefully in the meantime I can continue to work on my relaxation skills.

My skin marks pretty easily so I'm already getting a couple little bruises, which I didn't get last time. Then again, the resident actually did the injections, though very closely supervised. He likely just hasn't yet developed the skills that come from years of giving these injections.

Here's hoping (still) things start turning around soon.

Got Hope

Hope is so important, especially when you're living with chronic pain. Nothing I've encountered in my life has challenged my sense of hope the way my chronic migraines and fibromyalgia have. I've frequently been overwhelmed with the sense that I was in a horrible dark hole of pain that I may never get out of. I mourn for the things I can no longer do and the life I used to lead. I get angry about all the pain and the brain fog and the fatigue and the nausea...

Sometimes these things weigh very heavily on me and finding my way out of that hole can be very difficult. These are some of the tricks I've found helpful:

1. Laugh, laugh, laugh: This can be the hardest thing to do when you're in a hole. You can either fake it for a while if you need to (sounds cheesy but it really does work), or you can have some standby laugh inducers. There are some things that always make me laugh, certain SNL sketches, Arrested Development... Enjoying a good laugh always puts me in the right frame of mind to begin feeling better.

2. Set aside some time to really feel everything you are going through. Stuffing emotions only delays the inevitable. By giving them a time (not too long) you can honor them, understand them and then set them aside because emotions are just emotions and they don't have to run our lives.

3. Spend much more time focusing on all the positive things in life. I like to focus on the things I can still do, the blessings I have, the people I love - that kind of thing. This always helps me to keep things in perspective and remember that there is actually hope.

4. Do things that are fun and relaxing, no matter how big or small. Doing these things help me to feel more like a regular person and sometimes I even catch a glimpse of the old me. Honestly, this probably does the most to help me feel hopeful. I know I'm still in there and someday I hope to see more of that me.

Fantasy on the Road

Driving down the road today the sun felt like it was cutting straight into my eyes and then twisting my brains, scraping my skull. Since I was was still about 10 minutes from home I started fantasizing about ways to block out more sun than my shades can handle.

What if you could buy contact lens that had been tinted to block out the rays? You know how you can buy them to change your eye color, same kind of thing only these are going to protect from dangerous UV rays and darken the lights. I could wear them all the time and then supplement with sun glasses for a little extra blockage when going outside.

Wouldn't it be great? Assuming it didn't hurt my eyes to have something on them...

A New Perspective on Pain

Recently I watched a program on Netflix called Medicine Men Go Wild.

In this series of 4 episodes twin doctors from London go all over the world exploring medicine outside the traditional. The 2nd episode was of particular interest to me as it was all about pain.

The doctors went to a few different places where pain medications are not available and so are not used. It seems there was almost a cultural difference in the way these people approached pain. They seem to accept it and because of that it isn't as much of a bother to them.

Obviously they were talking about acute pain, not chronic pain and there certainly is a difference between the two. Never-the-less it got me thinking about pain, my pain. I've certainly had to adjust over the years to a certain level of pain because it's always present to some degree. These days it is only the really bad pain that gets much attention. Is this the same kind of thing? Is it possible, with time, the level of pain that I can adjust to will go up? Is it possible that in the future, with enough mediation and such, I could accept my migraines the way I accept the daily chores of life for example?

It would be interesting to see how these same groups of people cope with chronic pain within their communities and cultures.  

Weekend Recovery Continues

My husband and I had big plans on Saturday, well, big for us. We had dinner with a couple he has been friends with for almost 20 years. They live about an hour south of us so after dinner we had them over to our place so we could continue our visit. This was the plan from the start and since I hadn't ever met them before I was a bit nervous.

I went and did some cleaning that afternoon, the basics like the bathroom, the floor and then just straightened up a bit. The cleaning alone wasn't bad for me but following it up with 6 1/2 hours of visiting pushed me over the edge. The couple was very nice, down-to-Earth folks who were not consumed with perfection. Ideal really for someone like me who is dripping with imperfections. Unfortunately, no matter how much I am enjoying myself I know lots of activity like this comes with a price. I was expecting to pay the piper on Sunday. I guess I just wasn't expecting to still be paying today.

I don't often push myself like I did last weekend because it is better for me to keep things low key and as even as possible. Sometimes, in the moment, pushing myself seems appropriate and I'll just plan on recovery time after. Today I'm thinking that perhaps I shouldn't have pushed it quite as far as I did. I shouldn't have done as much cleaning as I did before going out. I shouldn't have stayed up as late as I did, visiting with these friends.

I just need to do a better job of setting limits and sticking to them. Consistently.

A Good Read

I recently finished one of the books the folks from Mayo's Fibro clinic recommended called Simplify Your Life by Elaine St. James. It was a quick read, a small book, divided into short well labeled sections allowing you to skip sections that don't pertain to you.

Living simply is something that has always appealed to me as a concept though admittedly it is something that I really hadn't put much effort into until more recently. I may not have ever been an extravagant person but there have certainly been times when I caused myself undue stress because I was living a fairly complicated life. I would say yes to things I didn't really want to do. I would work too much and even play too hard.

Living with chronic pain has really been the catalyst for slowly embracing and really putting effort into simplifying my life. I have completely changed the way to cook and eat, I've been cutting down on possessions and really trying to evaluate what I need to be healthy and happy. I don't answer the phone just because it rings. I don't answer the door just because someone knocks on it. Reading this book helped to really reinforce the changes I've already made and even offered up a couple news ones. Ideas on ways to simplify gift giving for example.

Simplifying life hasn't cured me, or even reduced my migraines but it has cut back on my stress levels and it has prepared me for the relaxation/meditation stuff that I'm learning. Plus it I've found that living this way suites me a whole lot better. It can be a challenge, especially early on. Fortunately, I've found that simplification begets simplification. The more you simplify the more you want to simplify.

I would recommend hunting this little gem down at the library if you're looking for some ways to simplify your life. It's also worth a bit of a chuckle as it was written in 1994, the early days of our modern technology. Interesting, this aspect of the book also shows how timeless these concepts are.