“Venting About Migraine Disease”

“Part Two:  Enter, Stage Left”

The “denial and anger” part of this are wrapped up together in one ball. Having chronic migraines for 44 years pretty much takes the denial that you have migraines out of the picture, unless I decide one day that I am feeling really well, that I am up for “getting things done”. So, I go out and have a type A day, and do everything I can for 12 hours. I return home, exhausted, start having a serious aura which lets me know a migraine is on the way, and I get angry at myself for trying to do something the disease I have is going to make me pay for in about 6 – 8 hours. I awaken, typically, at 3:00am with a #8-9 migraine that takes, on average, 3 days to abate, depending on the rescue meds I have on hand that are still working.  With that level of pain, I have been known to bang my head against the wall, throw things, yell into a pillow, or just cry uncontrollably, each of which make the pain worse. Then I settle down with blinds closed, eye mask on, ice bag on my head, and wait for the medication to start reducing the pain. If it works.

By then my frustration level is also quite high because I did bring this on myself by “pretending” I had no disease to be managed. Somehow pretending seems less serious than “denial”, but that is only semantics.

When the pain is unusually bad, or someone says something to me that is so insensitive or hurtful, I wonder why I go on talking to them. My “anger” can return then as well, and I leave feel more isolated and depressed than the I was during the previous hour or two. With some of the newer meds the acute part of the attack is over within a couple of hours, a huge improvement over the meds I was on 10 years ago. However, they do not always work more than once or twice, so the search for working, usable meds is ongoing, frustrating for me, and my docs.

Did I mention they are also very expensive?

Many of my friends are in denial about my migraines. They do not believe migraines are a disease with no cure. They have compassion for the constant pain I live with, but it often feels hollow and condescending to me. How could they understand? Unless one experiences chronic pain, it is, I think, unimaginable. Some don’t believe I am in pain. Some think I exaggerate the pain. Some think I need to try alternative medicines, as if in 44 years I have not tried acupuncture, herbs, homeopathy, Chinese Medicine, kinesiology, chiropractic…the LIST goes on. Their road to acceptance of me as I am, is a lot harder than mine. They did not live through the two years I spent off all pain medications.

Around 1987, after getting off a daily dose of 60 mg of Librium (which I was told was not addictive by my doctor), Inderal & Tofranol (a beta blocker and calcium channel blocker), I decided I had enough of the allopathic community. I was recommended to a kinesiologist who was said to work miracles on chronic pain issues. So I booked an appointment. She tested me for food allergies, and after finding I was allergic to just about everything, gave me little bottles of herb and other homeopathic mixtures I had to take ever 2 , 3 or 4 hours during the day. Finding things to eat was a problem. If I went out, I would arrive with a list of ingredients to the waiter to pass to the cook to see if there was any dish that had none of these ingredients. Otherwise, I would have a bowl of plain rice and some vegetable that was not on the list.  Since I was not a good cook, my refrigerator was empty except for the 3 or 4 things I knew I could eat safely. I was on a diet desert. I went twice a week for a massage, and treated my migraines, as instructed by my kinesiologist with powdered Vitamin C. Lots and lots of it. After two faithful, and  very painful years, I went back to a neurologist with a migraine specialty. I just could not cope with the migraine pain. The migraines had increased from 1 every 6 weeks to 3-4 a month. I was exhausted, and it was starting to affect my ability to be productive at work.

Thinking about that time in my life in context with this post, I would have to put that in the “bargaining” category. I only did this once, and I think my frustration with all the alternative suggestions stem from this period. I tried all other alternative routes during this time, which is why, although they may work for some, have not proved helpful for me.

And did I mention they were all expensive and not covered by my insurance?

Thinking about friends that do not have this disease and are leading active, productive lives can throw me into a depression depending on how I am coping, and how bad the pain has been within the last month. Although I have been clinically depressed at times during my life due to co-morbid conditions not part of this post, depression is a funny thing. It can drag you down if you are not careful, so I would rather be angry for an hour or so and move on than wallow in a sinkhole of depression and risk a prolonged episode. I am not always successful, and a week’s bout of depression will come after a lot of pain whether I want it or not. I just lose interest in everything from dealing with so much pain.

The last stage of Kübler-Ross’s theory, “acceptance” after all I have described is relatively easy. Really. Knowing that I will always have this disease, and can only manage the pain, nothing more, is still difficult. There are all the pills I have to swallow for real, and who knows what they are doing, or have done to my insides, my organs, and other by-ways, veins, arteries, blood flow, and the all sensitive neurotransmitters in my brain. I don’t know how they are affecting my ability to bounce back from the daily migraines and auras which are pretty much constant these days. Not all of every day, but every day. I don’t know if they are making me susceptible to other complications because I am on newer, off label, cutting edge drugs. The others have all stopped working.  Insensitive comments from other people who used to make me so angry just go on my LIST I can compare with other migraineurs. Everyone has something in their life that is tough to deal with. Who am I to judge another’s situation against my own?

“Life is a Journey, not a Competition

(I apologize here if I have mistakenly taken a quote attributable to someone else for myself. Please let me know if I have done that and I will correct the error. Otherwise, I am happy to be its author.)

Getting rid of, or moving away from my denial, anger, bargaining, and depression from migraine disease, is a great part of controlling my frustration, and providing an outlet for venting over this disease. The disease is not going away.

“LET IT GO” is my new mantra.

This is not as difficult as it sounds. Sometimes I do it physically. If I have the energy to go on a walk, I do that and pound the pavement for as long as I am able, crushing the pain nerves, the auras, the pills, the endless forms and diaries, and anything else that is high on the venting LIS. If that is not possible, I burn pieces of paper with each item I need to vent over written on the paper and watching it go up in smoke. Other times I buy a balloon and write everything on the balloon with a marker, and let it go into the sky.  Personally I like this one, because I can take pictures of the balloon flying away, so I have a dated picture to look at, unless there is something else I want to add to the LIST. Then I go back to the paper or let fly an updated balloon of another color that identifies with the writing.

The last method is the one I prefer and do most often. It involves a kind of “meditation.” As an artist and a very visual person, it is easy for me to sit comfortably, close my eyes, and visualize all the frustrations, the anger, the pain, and anything else I want to let go of surrounding migraines. Then I gather it in a pile, and then, like Harry Potter using his wand on the Dementors, make the pile disappear. Poof! As all my emotional frustrations disappear into a cloud of smoke, I feel better and lighter than when I started.

During this process I have somehow managed to include the anger I direct at the caregiver” part of my self. The piece of me who puts up with, manages, and deals with the disease, at the same time I have this disease.  I give that self the understanding, compassion and care it needs with everything that needs to disappear. They are my frustrations, the things I need to vent about, just like everyone else. Including my self along with the disease is the most profound transformation that has occurred in all my years with migraines.

I have always had an excessive dose of compassion and patience for the troubles of other people. My own pain struggles have somehow heightened my innate empathy. I reach out to help others when I can. Without realizing it, I had left my the caregiver “self” out of that equation. Because I am single, live alone, and have no daily support system other than myself, the more I include my “self” as also requiring the understanding of what I deal with daily, and have compassion and empathy for what I am going through, it leaves me some space to work with what comes along. Even frustration and venting.

Staying in a state of “acceptance” of my disease is the most efficient way I know to handle the frustrations which come often, and rear their ugly heads at inopportune times. Venting has become easier. I have better ways to cope with them and let them go. Migraine disease is not who I am, after all. It is just part of my journey.

May your journey and mine, be long and healing.