If you have migraines of any type, you know that the second you say, “I had a migraine this weekend” that inevitably someone will say, “I get bad headaches and I just take a Tylenol and it goes away”.
Seriously, this comment makes me want to punch them. But instead I just move on and try not to let myself be bogged down by someone’s lack of concern. What is really strange is that this person probably thinks they are showing empathy.
Why does this lack of understanding come from? Well, my personal opinion is that it is used often to describe any headache. It has become so watered down that the true severity is now ignored.
Migraines come in many forms but there are a few factors that are the same for all types of Migraines. First is that the headache is only on one side of the head. Mine are always in the exact same spot…every single time! Second, sensitivity to light is so common among people with migraine that it is often the first thing they are told by Doctors to do…lay in a dark room.
But migraines also have 4 different stages that the typical headache will not have.
- Prodrome (pre-migraine): It can be a smell, a ringing in your ears…really anything that you can consider a sign that you should get ready. This is the warning bell…learn what it is for you and always listen to it. 90% of the time I smell blueberry muffins up to an hour before one starts!
- Aura: this is where the sensitivity to light begins. And depending on what type of migraine you have been diagnosed with can include but is not limited to, seeing light or dark spots on your vision, garbled speech, weakness, dizziness, paralysis and stroke like symptoms.
- Headache: this is where it can get tricky. Not all migraines include head pain. Yeap, that is correct! They are called silent migraines. You will be just as sick but without the pain. Remember that head pain is only a symptom of the migraine.
- Post Drome (recovery): I call it that “Day after the Migraine feeling”. This phase can include continued nausea and light sensitivity, decreased appetite, fatigue, difficulty concentrating, etc.
So, you see? A migraine is so much more than a headache.
Yesterday , I had one of those Hemiplegic Migraines that made me text my husband to come home from work. The pain was a 9 with spikes that were much worse. I couldn’t see out of my right eye, my right arm wouldn’t work and in trying to get my medication I dropped it. Fortunately, my oxygen was working properly. I laid there with my oxygen going, trying and failing to focus on breathing. Every pain spike left my body tensing up to the point that I couldn’t move most less breath. The more spikes I had the sicker I got.
My sweet husband gave me my medicine and held me tight through each spike until the medicine kicked in. He gave me a fresh drink and something to eat then tucked me into bed. He also picked my medicine up that I had accidentally sent crashing to the floor. He reluctantly went back to work and I went to sleep just knowing the pain would be gone when I woke up.
Two hours later, I knew the pain was still there before I even opened my eyes. I laid perfectly still hoping it was a bad dream…it wasn’t. Well, I will eat lunch because that really might help…it didn’t. When it was time, I took more medicine hoping it would do the trick…nope, still there!
I used every thing I knew to try…still there.
So, what do you do when the pain won’t go away? Today, I curled up underneath my favorite blanket on my bed. I listened to some documentaries I had found on youTube (yes, I am a geek) on my phone really low and I just tried to rest and I took some naps.
Nothing has really helped the pain though. What do you do on those days when the pain just won’t go away?
I have been battling Hemiplegic Migraines for over 20 years. They were only two or three times a year until two years ago. For some reason, my episodes started coming multiple times a day and most every day.
During the past two years I have had around 5 hospital stays, multiple ER visits, heart surgery and more medication changes than I could even try to list. I have changed my diet, gave up chocolate 😢 and tried really hard to cut down on caffeine (some what successful).
I have some really bad episodes but NOTHING compares to yesterday morning. The pain woke me up and the pain was a 9 on the pain scale with spikes of a 10! My husband gave me my medications and I used my oxygen. Every time the spikes would comes, my entire body would tense up. This pain lasted for almost 45 minutes before the medicine started working.
Needless to say, I spent yesterday in bed. Today every muscle in my body hurts and to add to the chaos there is a weather front coming through and the barometric pressure in falling. 😡
Maybe it is because I am tired from yesterday…maybe it is the weather today…but seriously! I just want to pull the covers over my head and hide. The paralysis, the inability to get my words to come out right, the brain fog and the excruciating pain… I am sick of it!
I never intended on this blog being a place to vent but I decided that it makes the blog real. So even though I don’t mean to complain, I decided to anyway.
Go ahead…comment below with your complaints about your chronic illness!
While many people are excited about the time change that brings longer days and warmer days, I am not among them. My Doctor from the Mayo Clinic says that my Hemiplegic Migraine react to circadian rhythms.
Well, what is a circadian rhythm? The “body clock,” is a cycle that tells our bodies when to sleep, rise, eat—it regulates many physiological and neurological processes.
So what does this mean for me? It means that one hour of sleep that everyone is loosing can send my “migraine brain” into a tailspin. It can mean an increase of number and/or increase of intensity. Sounds lovely, doesn’t it?
This change in time does not just effect people with Migraine. People with many other chronic illnesses experience an increase in symptoms as well.
Want to know more about circadian rhythm and migraines? Check out this article from The Cleveland Clinic: How ‘Springing Forward’ Impacts Headaches
For more information on how to make the transition easier, check out these 5 tips for surviving the time change.
We have all heard the saying, “My get up and go, got up and went”. What if you didn’t have any get up and go to start with? It left so long ago that you don’t remember having it and you most certainly don’t remember it leaving!
Most people battling a chronic illness also have extreme fatigue. Fatigue is so much more than just being tired. Fatigue will never be cured with an afternoon nap or a good nights sleep because you wake up just as tired as you went to bed…no matter how well you sleep.
This fatigue feels like a 1000 lb. weight is chained to your leg. Even with that extra weight, that no one else can see, everyone expects you to keep up because you “look okay”. So you try…some days you do pretty well but you pay for it the next day or the next week. Some days you fail miserably and you totally crash as your body leads a rebellion against you.
So, I have a new saying that sums up how I feel since my get up and go left and didn’t return. “I’m so tired My tired is tired”. Yeap, that’s right! My tired is layered with tired…hundreds and sometimes thousands of layers of tired!
What words or sayings do you use to express your fatigue?
What is a wall? A wall is the thing at the end of your energy. Everyone has a wall…EVERYONE!
Sometimes getting ready for the day (showering ,brushing hair and teeth, getting dressed, etc.) pushes me to that wall. Some days I actually have enough left to actually get out of the house. And yes, some days I wake up and I am mere inches from that wall.
So, what is the difference between my wall and yours? Location! Your wall, on most days, probably sits so far away that you can’t even see it…you might even get through your entire day without even getting close to it. For me, that wall just sits there. I never know when I will get so close to it that I collapse. It is always lurking…sitting there taunting me.
So, what happens when I hit my wall? Fortunately, I am learning to listen to my body and the signals. If I seem exhausted in an instant… I am getting a little too close. If I have been stubborn and pushed myself way too hard…well I usually crash into the wall so hard that I end up with a Hemiplegic Migraine where the paralysis can last for hours and the pain will last for days and the exhaustion can take a week to recover.
Anyone that has a chronic illness has a wall that is always closer than they would like it to be. Everyone that battles for every ounce of energy…every single day has a wall that lurks. But each person will experience hitting that wall in different ways.
What does your wall look like?
One of the first things I say after an episode and I am actually able to put words together is “I’m Sorry”. And now that I have learned the sign for I’m Sorry, I say it before I even get my voice back.
So, what exactly am I apologizing for? It’s not like I can help it. I am doing everything I can.
I am apologizing because there is nothing else to do. I’m apologizing because my life feels like it is spinning out of control. I am apologizing because maybe I had to cancel plans. But most of all… I am apologizing because I’m frustrated.
Does apologizing help? Nope! But it does give voice to all the things I am feeling…in just 2 words.
Does it mean that I am feeling sorry for myself? Absolutely not!
The next time you say you are sorry, ask yourself “What am I sorry for?”.