Monday, June 17, 2013

My Eight Year Journey

Yesterday was Father's Day, an important day in my life, but not likely for the reason you think. Father's day 2005 I got a headache. No big deal, you might think, why is a headache important? Well, the thing is, I still have that headache, 8 years later.

The only good thing about the many doctors I have seen is that they all believe there is something real going on, they just don't know what. I have had all kinds of expensive tests, most of which come out normal. Some things they know are wrong, like my reflexes not responding correctly.  All are neurological issues, but with no obvious cause. I now have a host of symptoms with no diagnosis, no treatment, no relief.

I rarely talk about my medical issues, but this post is all about them. It's not meant to be a whiny post, and I sure hope it doesn't come off as one. I'm not likely to mention anything about it again, at least until next year this time. It is a wonderful story, really, because it's all about coping strategies, living a victorious life despite challenges, and realizing your blessings far outweigh your burdens.

When I first got this headache, it was annoying. I was irritable, confused, and tired. After a week of having it, and having some other issues starting, ringing in my ears, eye pain, ear pain, and light sensitivity, I went to the doctor. Oh, it's likely just a bad migraine, take this medication. Nope. No change at all. Go for these tests, all normal.

The first few months were the hardest. All five of my kids were teenagers, living at home. I was homeschooling four of them. Some days I felt like I was losing my mind. Keeping the household going seemed too hard to do at times. They tried a couple different medications. The side effects were worse than the headache. One made it so I couldn't hold onto anything. It was a lousy way to get new water glasses, breaking all the old ones :-P

On a good day, my headache is like a shadow, barely there, like the remnant of a bad headache. On a bad day, well, on the worst days, I am non-functional, gasping for breath because I keep holding my breath, forgetting to breathe because of the pain. At it's worst it is easily the worst pain I've ever felt. Childbirth was a breeze in comparison. Broken bones? Been there, done that, this is worse. When it is at its worst, I can't talk, can't form a sentence even in my head. I can barely move, and can't really process anything besides the pain. Thankfully, there aren't a lot of the worst days. Unfortunately, the really good days aren't plentiful either. Most days are somewhere in between.

 The tension in my muscles because of the headache led to a bunch of neck issues, which at this point is causing more pain than the headache itself. I can do exercises for the neck issues, which helps with the headache, but makes the numbness in my hands, feet, and face much worse. 

One of the things I am most thankful for, is our God-given ability to adapt. I started learning ways to cope with my new normal. If I couldn't follow a recipe that day, I learned to cover up all the words in the cookbook except the line I am on. Move the papers around with each ingredient, and I could cook again. Light sensitivity especially bad? Sunglasses in the house works. Ringing in my ears driving me nuts? Turn on the radio, it's a distraction. Numb hands? Don't chop food with  a knife, use the food processor, use an electric can opener. Having trouble concentrating? Write a list of what needs to be done.

One of the big things that I started doing during this time was quilting. I have always loved quilts, and I always wanted to make quilts. I bought a couple quilting books years and years ago, but could never find the time. I had made a couple fledgling attempts at quilts, a wall hanging, and denim quilts for two of my daughters beds when we were redoing their room. When DD#1 was getting married, I decided it was time to try my hand at a big quilt, one for their bed. I picked a rail fence pattern, but put it on point to make it look a little more intriguing. I tied that quilt, and the next one I made for DS the Elder. I thought about all the people I wanted to make something tangible for, something to show them I loved them.

I think in those first couple years, I was really thinking this headache would kill me. I kept getting tested for brain tumors, hearing the word aneurism, and I always had it in the back of my mind, maybe they missed it. I think the beginning of my quilting was my legacy, and within the first three years of my quilting, I made sure all of my kids had a quilt made by me.

Quilting may have started out as a legacy for me, but it has become my coping mechanism. Creating is my outlet. I can vary my activities based on how I feeling that day, or sometimes that minute. Is my head so bad I can't do anything complex? How about making some string blocks? Can't stand the sound of the sewing machine? Do some cutting. Hands too numb to hold the ruler? Get out the Go cutter, press something, design a new quilt on EQ. Ever wonder why I always have a dozen projects going at once? That's why. It's not because I can't finish anything, it's because I have to vary my activity based on my pain levels.

Life has gone on in the last eight years. Kids moved out, kids moved back home, kids got married, grandchildren were born. Right now there are six people living here, and life is busy. When it's not as busy, I make myself busy. Staying busy keeps me from being depressed, keeps me from being so self-absorbed. Chronic pain has a way of wearing people down, making their number one concern the pain, or trying to avoid the pain, or dealing with treating the pain.

I am not on any prescribed medicine for the pain. In fact, I'm not on any medication at all. Most days I don't even take ibuprofen, but I will if I absolutely need to. I use heat packs and ice packs and such as frequently as I need them. I don't leave the house without sunglasses, even on a cloudy day. I do things as necessary to help me cope.

If you have medical issues, don't stop living your life! Adapt! Find new ways to do things, new methods that work better with your challenges. Learn a new skill. I started quilting after I got the headache, you can learn something new too.

This is my battle, and I will not let the pain win. I will enjoy my grandchildren, I will be there when my kids need me, I will be a wife to my husband. I will not give up, I will not stop creating, I will not stop praising God because He is good ALL the time, even when circumstances are not. The victory is mine!


marilyn said...

Wow, you sound just like me. I'm on 5 different preventatives for the migraines now. The latest is Butterbur and B2 along with Nortryptyline, propranolol and Topamax. I just came off a month of prednisone to break the rebound headaches. I've accepted the migraines as my new normal and also find that keeping busy helps keep the mind off the pain. I teach high school and often wonder how I make it through the days. I will be praying for you.

Unknown said...

Excellent post, Mel. Thank you for sharing this part of your story-its very inspiring. Love you!

Unknown said...

Umm...that comment was from me...Eva. I signed in, but it didn't use my name. lol.

angelindisguise said...

My friend had such bad migraines... Until she was disagnosed with an MSG allergy. Unfortunately most things - contain MSG. There are even natrual MSG culprits, liek tomato and mushrooms, seaweed and milk solids that affect her.

She changed her diet and only gets them occaisionally now.

Not sure if this information owrks for you.