Always Put on Clean Underwear!

Did your parents tell you this as a child? There was a time when parents would tell their children, who were traveling ANYWHERE, to put on clean underwear. This was in preparation for a potential accident. Goodness knows you did not want the rescue squad to see you had on dirty underwear!!

What does this have to do with chronic illness and pain? Let me explain. For the entire length of my illness, no matter how bad I feel, I have always walked out of my home as put together as I could manage. Now, again, you might be thinking, so what? That’s what we all do and you might be right. I would encourage you to rethink this.

Going Out

My preparation begins at least 2 days to a week before my appointment or event. I sleep a lot. I eat a low histamine diet. I do not do any cleaning, exercise or anything that will stress my body. I stay off the computer. I do not schedule things back to back. There must be several days between any events (an event can even be just going out with my husband for a day to walk around or a phone call).

The day of the event, I try to relax for at least an hour before beginning the process of getting ready. I take a shower at least 3 hours before we need to leave my house. After my shower, I usually need to lay down for at least thirty minutes because the hot water causes a release of histamine and my muscles are very tired. I put on makeup and rest for a few minutes. I dry my hair and rest for a few minutes. I get dressed and rest for a few minutes. I brush my teeth and sit down until the nausea subsides. This is all assuming there is no dizziness and my headache isn’t at a pain level above 5. In that case, it takes longer and I may not be able to keep the appointment.

Once my appearance is okay, I need to make sure I have water and snacks if I am going out. In addition, I always carry a bag with medications, towels, plastic bags for ice, and nausea bands. Once I make sure everything is there, I go.

If I am driving, I need to make sure I look up the route before I leave. I have to do this even if I think I know the way because I’ve been there multiple times before. Otherwise, I will get into my car, leave my street and realize I have no idea where to go. This happens frequently.

After appointment or event, I come home and go to bed with ice packs and Advil. My headache pain is typically at least a 6 at this point. You may ask why I only use Advil and that’s a great question. It is the only pain medication I have available to me. Other migraine medications have not worked. Truly, just going to sleep helps more than anything. It usually takes at least three days to a week to recover, depending on the event.

What’s my point? Back to the clean underwear! Making sure I always look my best when going out has, in a sense, backfired. I look okay. Most people I encounter, including my doctors, think I’m okay. “Well, you should see the woman who can’t be in the light.” “You look fine.” “You can do what you want to do.” “Maybe if you exercised more and lost weight.” These are all things I hear on a routine basis. I have always tried to look my best. It never occurred to me that doing so makes me look well when I’m not. The only one who truly knows what I go through is my husband. He sees my everyday struggles just to be.

Let People See

The last time I went to see my general practice physician, I went exactly as I felt. I did shower but no makeup, no doing my hair and no trying to look presentable. I was clean and that was enough. It was an amazing visit. I found out that my doctor’s office did an IV protocol for migraines (similar to the emergency center protocols). If I had someone driving me, I could have done it that day. Didn’t know despite being a patient for at least two years. They also give IM injections of pain medications if you don’t have a driver. Again, didn’t know. It had never been offered. This physician is very good and patients wait years to get appointments with her. It wasn’t entirely her fault. I take most of the responsibility. My efforts to look presentable along with my brain fog (confused reporting of symptoms), had completely convinced her I was fine most of the time. What I was reporting was not what she was seeing!

Tomorrow, I will suggest a few things that may help you present a more accurate picture of your true situation.

Until then, keep choosing your way to healing with peace!

Chris