The last 3 weeks I have been in a migraine cycle from hell. Hell is the only place to describe it. I suffer from chronic migraine and even this rattled me. Here’s the thing I’d like to tell you about chronic pain, it’s too much for too long and too often!
You never get used to pain. I have found ways to mentally deal with it better, to alternatively treat it more naturally and ways to adapt my life but the reality is it hurts….a lot. With my migraines, I get insane pain (on all sides) that resonate throughout my entire body like a lightning bolt that never goes away. I throw up constantly (well, my body tries but at this point my stomach clenches so hard to keep any food in me that it’s basically violent painful heaves each time I sit up.) I have auras that consist of black dots, lines, zigzags, white light flashes and tunnel vision. I clench my teeth/jaw, fists, toes and thrash my body to the point I bruise. Light and sounds puts me at risk of passing out. The list of pains goes on and on and on while the minutes, hours, days and nights pass by.
When I was in labor, my nurse was able to tell me “Your contraction is at its worse, it’s getting better and going now.” The biggest battle besides the pain is not knowing how long the migraine will last. With this last cycle, I had points that I did not see the light at the end of the tunnel. The fear of living at a level 8/9 for the rest of my life was and is my reality. After an unending migraine, I don’t remember ever feeling better, can’t do anything to find relief and no one can tell me it’s going to be better soon because they don’t know that.
In comes the anxiety and depression that most chronic migraine sufferers experience. Anxiety about doing something to make it worse, about how long it will last, about missing out on life and about what will be missed in the future. Depression about being locked in a dark room alone for hours and feeling so alone. Alone. Alone to fight my pain because no one else can help. Feeling worthless and sad that this is my life and the way it will always be. Sadness from the things I can’t do and won’t ever do. The feeling of pain being the only feeling that I feel because nothing else can enter my mind is exhausting and unfair.
In fact, everything is exhausting and unfair. Even once the pain lowered, I was exhausted. Exhausted from fighting the pain and little sleep after days and days in bed. Looking at social media was too trivial. I can’t stand seeing moms complain about their kids when my children are my inspiration for everything and give me a reason to fight! Those moms are so ungrateful. In fact, the only reason I got out of bed was to go see my daughter for one hour at her school for an end of the year reception. I had spent the entire morning heaving from pain and used every bit of my energy to be there. One hour. One hour is where I spent all my energy in one day just to make my daughter smile and to make me feel human while other women are complaining that their kids are being kids….ugh, exhausting! (*Note: I’m planning on writing a series on how my children are shielded from these episodes….**spoiler alert** lots of help and preparation!)
Once I emerge from a cycle, I always find it difficult to enter back into the real world. The world outside of my pain, outside of my room, outside of my head. I look in the mirror and don’t even recognize myself. My face is broken out and I look so weak and pale. My list of to dos is a mile long and the cognitive damage and physical weakness make it difficult to multitask like I normally do. I have trouble with just one task and focus on that alone. The anxiety stays with me because I never know when my migraine will return. I walk on egg shells and give myself credit for doing even the smallest things.
Chronic pain is too much for too long and too often. Before this 3 week cycle, I had made it 4 days at a level 5 pain level. This was good, but 4 days since my last major migraine? It’s not like I got food poisoning and thought, “Wow, glad that’s over, I’m never eating there again.” I’m going through this dramatic traumatizing event and thinking, when will it come back? Not if, when. Will it be tomorrow once I eat a normal meal again, will it be when I leave the house, will it be when my children scream and my stress raises, will it be when I try to get my list done and push myself too hard, will it be in a few days with my menstrual cycle, will it be when the weather changes AGAIN, or will it be for no reason? It will always come back….and soon.
I questioned if I should write this post. I like to be optimistic and show my readers hope. But the reality is, I suffer. I suffer a lot. Hopefully I help many with writing MyMigraineLife but there is no cure and I live with that every day. This is not a post to make you feel bad but to remind you that you are not alone. That maybe someone has it worse and to show gratitude for everything you can do today. To remind you that you never know what someone is battling with and to be gentle and kind. And to remind you that someday it will get better. My better does not mean I’m ok, it just means I’m out of my dark room today and I’m writing! That’s better! I still have a long way to go and am very aware that tomorrow it could be much worse. All I can hope is that it gets better…..