“The rabbit-hole went straight on like a tunnel for some way, and then dipped suddenly down, so suddenly that Alice had not a moment to think about stopping herself before she found herself falling down what seemed to be a very deep well.” – Alice’s Adventures in Wonderland, by Lewis Carroll

Every time I find myself in one of the nasty migraine that lasts for days, a cycle of pain that I tend to call my roller coaster often reminds me of that little quote above from the book. As a writer I can probably find a lot of creative ways to describe what I go through with my migraines. I won’t bore you, especially now that I’m pulling from one that had me on the roller coaster for three long days.

The thing about the one I just got through is that I go through periods, an hour or so where the pain decreased enough for me to do more than just exist within the pain. Despite the pain I was at work, pushing through as I stared at the computer. I wore my sunglasses, I wore my hat. I found a place where the light did not kill me.

And I cried my tears.

Roller Coasters

rollercoaster.jpegI don’t like roller coasters. I don’t like them because I don’t like being scared. Fear was a part of who I was as a child for reasons that have no bearing today, but because of that time period I work hard to not feel it if I can. My current journey of self-transformation is to work on the fear of being alone. As I pulled out of this most recent migraine though I realize that I have another fear aspect to focus on working through. The fear that I’m the only one.

I am fortunate that I work in a place where they are accepting of my condition. They accept that it’s a part of my life. I can walking up to anyone in the office with my sun glasses on and they don’t mention anything about it. Not even blink an eye. If I have to go home, they tell me to take care of myself, ask me to let them know when I’m safe. So I do and it helps to know someone cares.

This year has opened up some of the worst ones I’ve had in a long time. I think it’s due to the weather and the changing nature of it with the pressure that comes with storms. Even now as I type this I can feel the pressure of the next sitting in my temples. I had mentioned in my last one that sucked me into a fog that lasted a month. Now that I’m aware of the potential of it I’m afraid it’ll happen again.

Young woman with a pounding headache

It started last Thursday actually, a squeezing of my head that came with light sensitivity and an inability to stay focused on what was being discussed. It came to point at a very important meeting I had to be on where I caught myself trying not to fall asleep. This is significant because I never fall asleep in meetings. Even the boring ones.

After I went home and slept for four more hours. This morning I stayed home for the same reason and I slept another five. That means 11 hours of sleep. In the last 7 days where I would usually get approximately 42 hours I sky rocketed to 68+ hours. Two days of extra sleep and it didn’t help that much.

That’s not counting the foggy parts where all I did was lay there, unable to do more than be suspended in the pain. Saturday was a good day for me, I was able to spend the time with my kids. We went out, had some fun, got some new things then it changed at 4 am the next morning.

The painful bits

At 4 am I woke up in pain and it didn’t go away all Sunday, just faded slowly with the occasional flare up to the higher level again. The type of pain where the idea of moving even hurts. Sunday, my son took care of me. My 10-year-old son… I hate that part most of all. The pain aside, the fear that I’ll fall in trying to go from one part of my house to the other, the fear the pain won’t go away. None of that compares to the anger and frustration of knowing that I’m in such a situation and state the roles flip of who is doing the taking care of.

It’s not supposed to be like this, that’s not how it’s supposed to work! But it does, it has to because I don’t have anyone else near me that can come and do it instead. My family is scattered around the US for the most part. My friends are casual and I don’t feel comfortable leaning on them to that degree.

And I won’t get into my ex even though he’d be the one who is very familiar with the condition, specifically my own condition. However we are not talking to each other so that makes it hard for me to be willing to rely on him for anything.

Stress head in smoke

Anyway… on Monday morning, I was at a dull roar, had my sunglasses on during a meeting when one of the newest of our co-workers asked me why. Yesterday she and I had a long talk about it, but I’ll get to that later. By the afternoon, I couldn’t stand being in the main part of the office because it felt like I was under the bright sun so I hid up on another floor in as much darkness as I could. It made me the most effective at work that day.

Tuesday started better, but again I was in that rolling change of pain, managing to be able to take off my shades only to have to dive back under them until again I was hiding on a different floor to work on.

This morning I just stayed home and it wasn’t until about 3pm that my head began to release the pain enough so I could listen to my son chatter away. When I asked him he confirmed he’d been waiting for 3 days to talk to me like he’s used to. Because of what happened last time, I forcing myself to pay attention, to catalog what is happening in my day.

I know I worked, and I know I had a few conversations and made progress on a work project, but still. I remember more the frustration that something is always alluding me. I simply can’t think straight or as fast as I normally do. Normal stuff that should be easy is difficult for me. I try, I really do, and that continues to feed into my frustration which starts me going down a different path of the rabbit hole. The one that is coated in a feeling of helplessness…

Self-care

selfcare.jpegA friend of mine asked me on Monday what I was doing for self-care and I told her honestly that I was eating. I realize that to most people who doesn’t seem like that’s a good enough answer, but please understand why I said that.

When the pain is so bad the idea of eating turns your stomach. It’s partly due to the side-effect that comes with migraines – nausea. However, as humans we need to eat, it’s a requirement. Because of both of those facts, despite my rolling stomach at the idea or smell of food, I have to force myself to put food inside me.

In retrospect perhaps I should do some juicing during my migraines so that I can get still get my nutrition, but I’ll investigate that later. Instead what I did was eat bland food. For example, this morning I managed to have four pieces of toast with peanut butter and coffee. That’s all I could do. Tuesday I managed to have some cottage cheese, apples and grapes, and a salad. I don’t recall having dinner, but I may have skipped it.

Monday, I’m not sure what I had though I remember a sandwich and pasta, not sure what else.

The other problem I have is dehydration because I don’t want to drink and when I do, I want to drink caffeine in the hope it’ll help. Sometimes, well to be honest, most of the time I forget, but I do try. So self-care for me comes down to food and water. Hmm, actually this is the first time I have come to realize that it’s very similar to the oldest form of punishment – a diet of bread and water.

Yeah, didn’t like where that ended, so moving on.

Does it end?

No.

I realize that’s not what someone would say and anyone who has begun their own personal journey in an initial diagnosis of migraines wants to hear. However I’m going to be honest and blunt, here are some truths in a nifty little list. Ready?

  • Migraines do not get better. 
  • Do not get pulled in by the stories of others at how it got better for them – it won’t work for you.
  • All you can do is manage the pain – most of the time it won’t do more than give a tiny bit of relief.
  • No one has the same kind of migraine as you do – my triggers may mirror some of yours, but not all of them and some of mine will make you doubt.
  • Treatment does help – right now I may not sound like I don’t think so, but it does.
  • There are good days and there are bad days.

It doesn’t help, I know. Learning truth rarely does even when we think it will. I don’t mean to be bitter, but I’ve dealt with these so long that I can no longer hide behind my reality. It hurts, it always hurts because of a simple fact ~ I am a chronic pain sufferer.

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