Defying Pain

About three weeks ago I got a tattoo. I know, I'll never get a real job, or become a Japanese businessman. I'm sure I'll regret it forever, and I'll never land a decent man.

And I don't care. (For the record, I already have a decent...nay...AWESOME man, a good job, and I'm pretty sure I don't meet a lot of pre-requisites required for becoming a Japanese businessman, not the least of which is lack of equipment.)

I have been planning this for a long time. My husband actually helped me design it. I wanted a word that when I looked at it, it reminded me who I am. I wanted something that would uplift my spirit and be very meaningful to me. I also wanted it to be beautiful. We spent most of our trip to San Diego in late July discussing what word to use. One we both really liked was, "unbreakable" however I wanted it to be big enough so that if someone wondered what it said, they didn't have to get into my bubble. I also didn't want it going up my arm, into my armpit, and down my side. Again, bubble time. So we threw around a lot of words. I didn't want strength, or peace, or fortitude, or supercalifragileisticexpealidocious. I wanted something that defined me, but also gave me strength. I am a strong person, but not always and I don't WANT to always be strong. In fact, I feel that times of weakness are times I learn to be strong. I just felt that, for me, it was a little black and white.

Finally Roy blurted out the word, "Defy!" That was it. We both knew it. It was me to a T! The word has a number of meanings to me. In 2003 I had a Whipple Procedure that saved my life. I defied death through the blessing of early detection through an unrelated CT scan that found a pre-cancerous tumor in my pancreas. I defied the odds by keeping my 100 pounds of weight off that I lost in 2002, through two major health crises. I have always been the type of person that if you tell me I can't do it, I will show you 100 ways that I can to defy you. Don't get me wrong, I am not a "defiant" person in a negative way, but I defy the odds. 

I looked at my arm today as I was driving to meet a fitness client for a workout. My head was hurting and I thought to myself, "I hope I can handle this" and as I turned, my tattoo came into sight. I immediately thought "Defy the pain!" I set my jaw and thought "Bite me, pain!" and I drove on.

Now did that make the pain go away? No. But as a marathon runner I know that my determined spirit can defy pain to continue on to the finish line. 

I am sure to some people this sounds trite, to others silly, and to fellow chronic pain sufferers, ridiculous. That doesn't matter. What matters is how it sounds to me. No, I can't always defy the pain. Monday I spent all day in bed with two pairs of sunglasses and a hood over my head, crying with pain. Nothing helped. There was no defying it that day. But at the same time I can't let every day be, as my friends in the UK say, "A duvet day." I can't let fear of more pain keep me from doing what I want to do. I can't let depression from pain keep me from enjoying my life. Sometimes I just need to remember that I CAN push through things sometimes. If I can't, at least I can try. After all, I don't know how far I can go unless I test how far I can go. 

The y on the word is the flight trail of a dragonfly on the front of my arm. The dragonfly has a special meaning to me for a number of personal reasons. In general, the dragonfly holds great symbolic meaning:

• Change and transformation
• Adaptability
• Joy, lightness of being
• Symbol of the realm of emotions, invitation to dive deeper into your feeling
• Being on the lookout for illusions and deceits, whether are external or personal
• Connection with nature’s spirits, fairies realms

Defying the Pain!

It may not be for everyone, a tattoo, but for me the symbolism is comforting. The fact that Roy came up with the word and designed it for me touches me so deeply because he is not really a fan of tattoos. I love the size because it can be seen easily and there is no hiding it. I think that the reason I wanted that is that my chronic condition is "hidden" and no one who doesn't know me can see it. It makes it even more of a challenge because there are times when I hurt so bad I have vertigo and am not able to walk without being near a wall. It makes me worry that someone might think I'm drunk, or due to the fact that I run a lot, am faking it. I think I wanted something that showed. 

Training with Pain

I am slowly coming to accept/fear/realize that I might be living with chronic pain for the rest of my life. I wish I could clearly communicate how much this has changed my life. I know chronic pain changes EVERY life, but of course I only have my life.

It's summer and my usual summer routine for the past 9 years or so has been; get up early and go for a run or teach a bootcamp, then go for a run. Eat breakfast and then saddle up the bike and ride 25 miles to go see a movie and have lunch. Later in the afternoon we might kayak for an hour or so, or I'll meet someone for a second run. Two or three mornings a week I'd head to the lake before the crowds and swim a mile. That was my life. I loved that life! LOVED it! We lived and laughed and I just felt so free. Why? Because for many years prior to me getting my life together in 2002, I was obese and those things were only dreams.

Now I get up to head to bootcamp because when I planned my summer schedule, I thought I'd be rid of the headaches. I sit in the parking lot praying that no one shows on a day with a bad headache. If they don't I go home and either go back to bed, or go for a run if the head isn't bad. If I go back to bed I spend the day beating myself up for not going out. It isn't a lack of desire, it's that exhausting round of "How bad is my head? If I run, it's going to hurt more. Well what do I have to do today? Can I do the run and then chill and let the pain subside? It doesn't mean we don't kayak or bike, but it's one or the other, not both.

I think that because people see me doing things like teaching bootcamp and training fitness clients, they think it must not be that bad. I worry they think I'm 'whining' about it when I'm not. I am truly trying to hold my shit together long enough so that I can just get through the hour. Today I trained a client and had to stop my own demonstrations a few times to "monitor" but what was really happening is that so much pain was getting in the way of what I was doing, it was stop or fall down.

Today was a very rare summer evening session where no one showed up, and I hate to say I was glad, but I was. I got new glasses this morning and they took my headache from a "about what I deal with daily 4-5 level" to 11. It was so bad that I was in the garden store and I kept having to stop to keep from throwing up. Now that is NOT like me. It finally hit me that it might be the new glasses, and when I swapped them out it went down from 11 to about 7 which is better, but still is just craptastic. The rest of the day was just a cloud of pain.

I worry if I accept that this is it that I will either fall into a depression or I will stop trying. I know that I have the ability to make that choice, but I worry that if I say "Okay, this is it..." that I will let it define me. Until my brain bled, I was someone who was often called the Energizer Bunny. If you asked someone about me, they'd laugh and say I was crazy! I'd run marathons for fun, and my goals kept getting bigger every year. People who don't work out would accuse me of having "exercise bulimia" because they could not wrap their brains around someone who loves playing outside more than a 7 year old with a new bike. If I accept that chronic pain is going to be a part of my life, does that re-define me? I want to be known as the crazy, motivating coach who treats everyone like rock stars and makes them think they can do amazing things!

I just don't know. It's like there is no handbook for how to handle life when it changes dramatically in some fashion, but it is not something others can see. If I had an amputation, or a wasting disease, people would know and maybe I'd be able to see it and accept the difference. Now I look in the mirror and I see the same old me I've always seen with a tiny bit more muffin top than I'd like. But the inside isn't that person any more. The inside is scared and unsure and stops to think "Can I commit to doing that? What if my head is over the top that day?"

So I did a workout today but I didn't run and it's really bothering me, but the idea of getting my noggin a bouncin' up and down makes me nauseous. I want to go to bed, but I don't want to give into it and let the pain tell me how to live my life.

Okay, maybe I'm not to acceptance quite yet...

I Heart Summer

Next to Christmas, summer has always been my favorite time of year. Because I am a teacher, I do not have the opportunity to work during the summer. (Just to clarify, no teacher gets paid for summers off. We all get paid only for the hours in our contract and some are lucky to get extra time for special projects, but no vacation is paid.) I use this time to reflect on my teaching as a high school IT teacher, and to teach summer fitness classes and help others find their fitness groove. I also try to kill my husband. Well that's his definition of I get us out playing on the water, kayaking, biking to nearby and not-so-nearby cities, and all sorts of fun things.

This morning, my first official day of summer break, I felt really down. I thought back to last year. I remember still struggling so much with fatigue and brain pain, I had to cancel almost all of my fitness classes. It was really a hard thing to do because I felt I was letting people down. I didn't cancel the running group because I had a group of people who volunteered to assistant coach with me. We arranged it and I felt great that I could still do that, but very sad about the rest of it. Sadly most of the people who volunteered to help were unable to; some for very good reasons (like having new twins is HARD!) and some for unexplained reasons. Some just floated out of my life with no explanation. I still wonder what happened; what I said or did. That was very very hurtful and it still stings quite a bit because it isn't like I wasn't thankful, or was inconsiderate, or was faking it. Maybe they did think I was milking it.

I suppose that happens with most people who deal with chronic pain. There is always going to be those who think you're over-reacting. What are you gonna do?

I was sure that if I took last summer off I would return to work as a teacher rejuvenated and that would be the end of my healing.

I'm so afraid that it was the end of my healing, but that wasn't what I meant when I defined "the end of my healing". I thought I'd be completely better and the headaches would be gone, my energy would be back, my brain wouldn't reboot, and I'd be my old self again.

Since last summer I have seen improvement in my fatigue level. It isn't a problem any more, although I still need more hours of sleep per night. That's not a huge deal. What I have seen no improvement in is the brain pain. That's why I say I fear that was the end of my healing.

This morning I got out for a run early enough to take my older dog (he really is affected by the heat) and Flik my little Bo-Chi (Boston Terrier/Chihuahua mix). Flik is a BEAST when it comes to running. He has the terrier musculature so he's a great little runner. He's run up to 13 miles with me. Wiley has done up to 20, but he's starting to peter out around five now. Makes me sad. Anyhow, got out with them while it was still cool. I could feel the headache racheting up, so I didn't put it off. Unfortunately my plan to run five miles was dropped to three. My head hurt, I was dizzy, (common when my head is bad), and I had to stop early.

That's when I cried a little. I had a little pity party because I'm not who I was two summers ago. I hate that. I hate that I can't just hop out of bed, teach a bootcamp class, run a few more miles, then go for a 30 mile bike ride. (This is my definition of about as perfect a summer day as can be, provided my honey is with me.) I know I'll still be able to do all of those things, just probably not all at once.

So what can I look forward to this summer? I am teaching five bootcamp classes a week. Three will be at 6 a.m. and two at 5:30 pm. I think that's going to be just fine, and I do have backup for evening class. I will be teaching a stroller class at 9 a.m. two mornings a week. It'll be a low impact class, so I think I'll  be okay. I also have running classes on the weekend. I'm VERY thankful that I will be doing all of this, and I think I'll be okay. I know some days will be hard but I think I can power through, I just wish I didn't have to power through. I just look forward to the day when I don't even THINK about pain.

Headache today: about a level six.

If I'm Going to Have an Ice Cream Headache

...at least I should get some damn ice cream!

I wish I could clearly communicate what it feels like to have this brain pain. Sometimes there is pressure, sometimes there are tingles (almost feels like my brain is vibrating), usually my ears ring (but they aren't today, and really it's only one ear...maybe it's aliens trying to communicate), often my ears feel like they are "hot" and not in a good way. Today it's my ice cream headache where it feels like just after the spike in the ice cream headache when it still hurts but not as bad as the spike. So it's like the feeling never really goes away.

I didn't take any pain meds today, just some excedrin because I don't have any more refills and I don't want rebound headaches. It's also the end of the school year and we have summer school starting next week. I'm the IT person (and a teacher, I wear BOTH capes, 'cause I'm cool like Fonzie) and that means I have to have all computer labs ready to rumble. Unfortunately since I lost some of my memory last year I am flying blind on how to do this. Our school burned down a few years back and we didn't have summer school for awhile. Last year was the first time in years, and I am sure I set it up...who else would have? Unfortunately I literally have no memory of it. I did find an email that I sent out with usernames and passwords, so obviously I did it. I remember things I have done a lot before the brain explosion, quite well. In fact while I was in the middle of the short term memory issues where I would sometimes forget what I was doing while I was doing it, I could teach concepts I've been teaching for years. (It helps that my curricula is super-organized and I write it all myself). But if I had to do something new, I'd read about it before lecture, have it bookmarked on a computer, and ta da I'd totally forget it. Or math...that was fun. I would try to do math and my brain for a few months, could not do basic math. I am told I once argued with a student that 5+2 was 9. I learned to just laugh it off, say "Sorry! Brain damage!" and move on. It would hurt too much to force it.

But I digress...this has left me setting up for summer school with very little to go on. I think I'm doing okay, but it is a lot of stress. So today I chalked my headache up to stress. I think that was part of it. Part of it is that it's going to rain tomorrow so the barometer is dropping.

I don't know whether I should feel proud that I do get so much done with the brain pain, or if I should slow down. I guess my worry is that if I slow down I am giving in. I mean I'm 48 years old. I take excellent care of myself (I lost 100 pounds and I've kept it off for 10 years). I could live another 51 years (since my husband is aware that I fully plan to live to be 99 and then I'll reassess my life plans). Do I want to "slow down" when I'm barely halfway through my life? Hell to the NO! So I keep going. Today I managed a few things:

1. I got dressed. I know you're jealous of my accomplishments.
2. I went to work as a teacher (I teach high school IT classes).
3. I did not kill any children. Parents tend to frown on that.
4. I managed to set up the user accounts for summer school.
5. I set up the menu for week one of clean eating (first week school is out).
6. I taught a kick-ass bootcamp, although I couldn't participate all the way.
7. I donated a small amount to Hands for Baby Jameson. Check out Hector Picard's page and be prepared to be awed. What an amazing man.
8. I wrote this blog post. Well I'm writing this blog post. 

So back to the ice cream. Today's headache is brought to you by Ben and Jerry and the letter 7, which is about the pain level I have been dealing with most of the day. So where is my ice cream?

Flexibility is on the menu

Today was a GREAT day, head-wise. I had a headache that went from 5-8 on the pain scale every day since last Wednesday. However, I am proud that I was still able to run 13 miles on Saturday and 14 on Sunday. Monday, though was a rest day.

So today when my head was feeling much better, even with periods of no pain, I was thrilled. I couldn't WAIT to get home to run. Got home, changed my clothes, grabbed two of the dogs, and out I went. But for whatever reason, I was not feeling good. Usually if I start and I'm wonky, it'll settle within the first mile. However when I passed mile two and my disconnected feeling was still there, I knew that I needed to stop. I called Roy and he picked me up. 

I am learning patience and flexibility. I know that there are some who might say "If you can run 13 miles, you do NOT suffer from chronic pain." The truth is it is BECAUSE I can run long distances that I am living with, not suffering from chronic pain. As an ultra marathoner I have the capacity to put pain on hold. When you're in mile 24 and you know you have 8 more miles until the end of the 50k you learn to take quick body inventory and move on, putting any non-consequential pain out of your mind. It is because I can do that that I think I am doing so well living with the chronic daily headaches. 

I was disappointed today to have to call and finish two miles short of my minimum goal, but like there are times in a race when I have to know when to push on, and when to be smart, today I had to listen to my body and be flexible. 

Today there are a number of storms passing through. Look in one direction and the sky is blue with nary a cloud, look in another and it's black and menacing. In one direction everything is calm, in another the wind is blowing. So throughout the day I'd be feeling good then get a spike of pain that might last 2 minutes or 20. I think that's what was going on as I ran. The weather was just messing with my balance and it made me feel disconnected and like I might fall at any time.

Oh well! I got to hang with my boys (Flik the Bo-Chi and Wiley the Shepard-Heeler) for awhile and be out in the sun! I did finish another mile of incline work on the treadmill so I got 3.5 in today. Not what I wanted, but flexibility is the word of the day. 

Started out as a good day, but...

...then about 10 a.m. I got a searing headache in the back of my head. I was helping a student and wanted to just sit down and close my eyes. Hate when they come on like that. I miss the old me. Yesterday I got home, did some housework, had dinner, and then went to bed. No run. No time with my husband. Just bed. I wish my neurologist would understand that these aren't just "Ow I have a headache" headaches. I don't know if I minimize it. He just doesn't seem to get that I need some relief and not just pre-treatments that don't work (Amitriptyline). Sure on good days when the headache is light, I get a lot done, I go for runs, I teach bootcamp classes. That makes it seem like "Well it's not too bad if she can do that, right?" The truth is, too many days I am in bed all day. I've missed so much work that now I pay for every day I'm out (no more sick leave so I have to pay my own benefits and receive no pay on days I'm out). I'm just trying to make it through the last day of school with no more days off, so Roy drives me some days. Unfortunately today I didn't feel too bad, so I didn't have him drive me. :(

I am not this person who whines, cancels plans, feels "sick", talks about medications and treatments. I have specifically worked HARD to ensure that my body does not sustain damage due to poor diet and lack of exercise. I am all about being proactive and taking control of my health, but I can't do that any more...at least not right now.

Some days I think "Surely this will end at some point, right?" After all, prior to the subarachnoid hemorrhage I had next to NO headaches. I was rarely ever sick. If I took sick leave it was most likely a personal day. Then on January 28 that all changed. The neurosurgeon said the headaches would go away within 4-6 weeks. Then when I was passed on to a neurologist because the neurosurgeon does not specialize in non-surgical treatments he kept saying "I still think they're just going to go away."

He isn't saying that any more.

It's just so damned frustrating. What if this is my life? I feel like "Well, then you need to learn to live with it and move forward" but damn it all to hell I do not WANT to learn to live with it! It is not fair that I had a brain hemorrhage. I did everything right. I am willing to work hard and to put the time and energy into resolving this. It is just maddening for this control-freak not to have any control.

I Want Normal Back

On May 2 I had botox treatments to help with the headaches and this week I thought it was working. I can't tell you how exciting that was. I knew it was not going to take all the headaches away, but the hope was that it was going to mean the intensity was a lot worse.

Monday we had one of those "If you don't like the weather, wait 30 seconds and it will change" days. We had wind storms, hail, torrential downpours, sun, thunder, lightning. Normally a day like that would send me through the roof, but it didn't. I had a headache, but it wasn't horrible and in fact I came home and ran, I taught bootcamp...just a great day.

Then Tuesday another great day. Hardly any headache. I felt SO good. I had dinner with friends, went home and took the dogs on a HARD run, just was on top of the world. Wednesday morning I actually said out loud, "I think it might be working!" Eek! So happy!

But what goes up, must come down. I suffered through the last half of the day. I monitored bootcamp on pain meds, and held my 5k class. I came home and crashed.

Today is worse. I am so defeated. I just feel like I will never ever be normal again. I should be on top of the world. We have tickets to the SIFF and the world premiere of Much Ado About Nothing. We will be watching Nathan Fillion and Joss Whedon walk the carpet. I have been so excited about this, but all I want to do is head to the ER and get a shot to make the pain go away. It Hurts So Bad.

Wow...I'm listening to a TV show on my iPad and a lady just said, "I want normal back."

You said it, sister. I want normal back.