Living with Chronic Migraine: My Expectations vs Reality

As I have mentioned before, I have chronic migraine. I wish they happened just every now and then; unfortunately, they are quite frequent. I do take medications to try to prevent them, but still need breakthrough medicine when a severe migraine attack strikes.

I have things that go on in my head about living with migraine that I wish were true. The fact is that a migraine attack causes my life, and the lives of others, to be turned upside down at times. Below are my honest thoughts.

The pressure to show up when your body demands rest

Expectation: I will get out of bed today. This thought is what runs through my head nightly, for the next day. I feel this is kind of like an affirmation.

Reality: I cannot get out of bed every day. I may wake up and have so much fatigue, pain, nausea, or lightheadedness from dealing with a migraine or post-migraine, that I just can’t make it.

I feel like I am always telling people that I am “sick” or saying, “I’m sorry.” It is not like I plan this. It just happens. All I can do is lie there, rest, and medicate when necessary. With chronic illness, there may be many days like this, but I do my best. I get up when I can. But, if I need to be in bed, I stay in bed. My body lets me know when it is going to be a down day.

The frustration of tracking your screen productivity

Expectation: I will be on my computer being productive every day, Monday through Friday. This was something that I told myself a few years ago. Now, it is a big, “I wish,” (insert smile).
Reality: I get on my computer maybe three days of the week, for about an hour or two. For one thing, just seeing the words go across the screen, the eye strain, or the onset of mild migraine symptoms prevents me from doing more.

It is difficult just turning the computer on knowing that there is much that I want to do each day, but just can’t. If I have been doing something else that day, I may not be able to even get on the computer at all. I do what I can. It is attempted on many occasions, but stopped before it’s truly started.

The internal battle of managing medications, appointments, and brain fog

Expectation: I will take my medications on time. I will not miss any appointments. Nothing will stop me.
Reality: I do sometimes miss my monthly migraine shot, as scheduled. I add it to my calendar because I have so much “brain fog” and will forget. I do not always see the notification to take it that day, or I feel too sick to take it. I will simply take it on the next day that I feel up to it though.

I have to call in, and cancel appointments, when the migraine symptoms are too much for me to make it. This often means canceling on the same day. Thankfully, when I explain what is going on, they do not charge me a same-day cancellation fee.

I am not Superwoman (lol). I know we all seem to think that we can do whatever we want, when we want. That is a big nope. We can try and sometimes, we succeed. Other times, we are not as fortunate. That is okay though.

Finding grace and educating the people in your life

Do what you can, when you can. Hopefully those around you will understand about your illness(es). Thank the friends and family that do get it, and possibly try to educate everyone else. Not everyone will understand, but in time, maybe.