I’m fighting Complex PTSD, and
Chronic Migraine EVERYDAY. Why?
Because I’ve already survived all of this…
I’m fighting Complex PTSD, and
Chronic Migraine EVERYDAY. Why?
Because I’ve already survived all of this…
People have said many things to me about my chronic illnesses. I have chronic migraine, major depression, and complex post traumatic stress disorder (CPTSD). I’ve tried for a long time to understand what the point is when people say certain things to me. Why would you say these things to someone you care about?
“I go to work when I’m sick, but whatever.”
Okay. Well I hope it wasn’t contagious! Man, I’ve worked when I’ve been so sick I got lost going to see the doctor (neurologist) during my lunch hour. Did I mention I’d been to his office at least twice before? I’m not talking about a bad cold or diarrhea. I’m talking about getting lost in a town I’ve lived in for almost 30 years, going somewhere I’ve been more than once. Not to mention the intense pain of chronic migraine that caused me to seek out the doctor who prescribed the medication that scrambled up my brain. I’ve gone to work in severe pain too. So many times its just a blur.
“You need a better plan. That’s why things aren’t working out for you.”
The best plan in the world doesn’t help me if I’m too sick to follow it. This isn’t about a plan. Its about me being chronically ill. It took a long time for me to get this sick and it´s gonna take time for me to recover and/or learn to live with it. Things aren’t great for me but the kids and I have a safe place to live, food & clothes. I think we are doing well, especially considering what we have all been through.
“You just need to get over it.”
“Are you feeling better yet?”
This is such a loaded question. Better than what? On the days I don’t have a migraine I’m either exhausted and recovering from one or I’m worried about when the next one will come. Then there’s the CPTSD. I want to feel better so badly. I fight every day to get better. Please stop asking me this question. You don’t really want to hear the answer.
“I wanted to be there for you but I was busy.”
I understand you are busy and I respect your time and other commitments. I only ask the same of you in return. Please don’t ask me to run errands for you, take your dog to the vet, or deliver business papers. Don’t stop by unannounced and dump all your problems on me. My cup is full, overflowing actually. My priority is my children. You are a grown-up with no children at home. I think you can take care of your own stuff. I’d like to be there for you but I’m to busy fighting to get through my day.
“I know how you feel.”
I doubt that. If you know how I feel you’d never say these things to me. You would understand how confusing it is to have someone you care for hurt you in this way.
A part of me wants to believe you just don’t understand, but I’ve explained it to you over and over again. You’ve seen me so sick I couldn’t get out of bed. What do you think I’m doing here? Do you really believe I wanted to lose my job? Can’t you see how hard I fight to take care of my family? Don’t you think I’d like to get over it? Somehow you believe I enjoy reliving past trauma? Sometimes I wonder because I’ve realized you are one of my biggest triggers. I’ve explained that to you but I guess you were busy or you didn’t listen because you already know how I feel. I’ve pleaded with you to stop the behaviors that trigger me. You know I’ve begged you.
I’m trying hard to see the point. Why do you say these things to me? Do you think This will Help?
I struggle with this every day. I lost my health working for money. Living without the money is a challenge but worth the cost to reclaim my health. I’ve exhausted and depleted myself by worrying about my future and those I love. I’m fighting to live in the present. I fight every day, all day long and into the night. I want to experience living again before I die.
You don understand and I wonder if you ever will. I’ve tried so many times to explain it. I told you one of my biggest triggers, and you don’t even try to stop doing it. Instead you turn the blame on me.
I understand that in your past, someone acted crazy once around you while doing something I also do. That is very different than being completely isolated from my friends and family for over a decade by a raging narcissist. You see I was systematically stripped of my identity and self worth in ways I can´t fully put into words and then I watched him start to do it to our children.
When we finally got away from him he unleashed a fury we are still reeling from. I’m scared much of the time because of my past. That trigger I told you about, actually, every trigger I’ve told you about was a desperate plea from me. We got away from the narcissist but you can bring him right back in an instant. He instilled so much fear in us which is exactly what you do when you don’t even try to stop.
No, it wasn’t you who did those horrible things to us. You just spark frightening flashbacks and expect us to let it go and understand you are having a difficult time coping with life. How selfish of you. If you don’t stop then you don’t care. You don’t understand.
I’m not mad. I’m mourning the loss of a dream and the loss of the person I thought I loved. The loss of my best friend. You’ve been gone so long I struggle to remember who you are and he truth is you are both people. You are the one I care for and the one who cares for me and is kind. You are also the one who is drowning and I’m too scared to tell you I know.
You are soaked in a poison that soothes you but also takes your life a little bit at a time. It takes you away from me and the past has taught me to keep quiet to keep safe. It’s caused me to be triggered relentlessly when the you I care for is gone and the other you is here.
The pattern is set. I’ve made the mistake again. My vision is clearer now even with the fear. I hope I can stand my ground. So many people are counting on me. I wish you could come with me. It’s not fair to demand that you change and it does no good if you aren’t ready. My dream is dying. I’m not mad but I don’t want to watch you drown anymore. It hurts too much.
Today feels good. It has been three days since my last migraine attack, and I can think so much clearer. I want to go outside and work in the garden (and I did)! I’m able to spend some time working and cleaning the house, but most of all I’m planning things to do in the future. I’m not naïve enough to think I won’t have another migraine because I know I will, and if they are fewer and farther between then I can heal better.
I finally, after many years, found a doctor who listens to me instead of handing me a bag of pills. Physical Therapy, Dry Needling, Biofeedback and Cognitive Behavioral Therapy are all helping me. Today is good. Thank you!
I seek out information on migraines because they are a significant part of my life. What I find most interesting is learning about how my migraines relate to other symptoms I have. Looking back on my life I can remember experiencing some symptoms since childhood. I also remember observing symptoms in family members. Recently, I noticed a connection between migraines and my ears.
I have trouble hearing my youngest child sometimes. I see her lips move and I hear her voice, but don’t understand what she’s saying. I need to drive or sit in the front seat of a car and stare at the road. If I don’t, I’m motion sick and vomiting. My ears ring and throb sometimes for no reason. Sometimes, I’m just plain dizzy in every sense of the word.
The trouble hearing is a newer symptom starting in the last couple of years along with the ringing ears. Motion sickness has been a part of my life for as long as I can remember. I remember being dizzy as a child but it only gets worse as I get older.
Johns Hopkins Hospital does a great job of explaining migraine symptoms related to the ear. For most people, symptoms related to the ear don’t happen at the same time as a migraine. This has been my experience too. I started experiencing trouble hearing after my migraines became intractable. I suspect a severe episode of migraine attacks can trigger new symptoms.
The more I learn about migraine symptoms the more empowered I feel to fight back against them. Just knowing my difficulty hearing related to my migraine gives me more reasons to try preventing future attacks. Another reason to exercise, eat right and avoid migraine triggers. I need my ears, now and for a long time.
I’ve had migraines for as long as I can remember. When I was a child I called it being “dizzy” or motion sickness. As I grew into adulthood I started noticing my triggers, strong smells, bright lights, not eating regularly and not enough sleep. When my migraines became chronic and started seriously impacting my work and family life, I sought medical treatment. The medication worked for a while but in the end I needed more and more medication to get help & the side effects ultimately cost me my job. Lifestyle change has helped me cut the number of migraines I get and helped me stop many of them before they take hold.
I avoid strong smells. I don’t wear perfume, use air freshener or us strong-smelling cleansers. I can feel certain smells in my head and it hurts. I can avoid these smells at home, but outside the home I am careful. Many people wear perfume or cologne, and use air fresheners. I’ve gotten migraines by riding in a car with someone wearing perfume, or being in a meeting room with air freshener.
I’m sensitive to bright lights, flashing lights and direct sunlight. Particularly at night when driving. The lights on other vehicles are so bright I often wear my sunglasses. Flashing lights from emergency vehicles, turn signals, Christmas lights and signs are a problem. I need to turn my head and close my eyes. Hard to do while driving. I avoid spending much time in the direct sunlight. I am fair-skinned and burn easily, but the sun also triggers my migraines.
Not eating regularly is also a trigger. I get irritable, nauseous, and light-headed if I go very long without food. I try to make sure I have food available when I travel, even if it’s just around town. I don’t have many food triggers, but drinking too much caffeine or eating too much junk food will trigger a migraine.
I need to sleep. I’m not someone who gets by on 4-5 hours of sleep a night. I need a good 8 hours or more. During some of my worst migraine episodes, I felt like I could sleep for a couple of years before I felt rested. When I have migraines I’m absolutely exhausted afterwards. Sleep is healing for me. I need it.
I’ve made some serious lifestyle changes to help prevent my migraines. I no longer work outside the home like I did for so many years. Being able to stay at home with my kids and limit my obligations outside the home has helped cut the stress in my life. I’m just not always dependable. When I have a migraine, I don’t think clearly and I’m totally preoccupied by the pain.
I struggle to exercise and meditate regularly. When I am able to exercise and meditate daily, I notice a positive change. It relieves stress, helps me sleep, makes me want to eat better and just plain feels good. It need to find more ways to motivate myself to get on the elliptical.
When a migraine starts, I’ve had success taking an over the counter pain reliever, putting an ice pack on my neck and upper shoulders, and lying down in a dark, cool, quite room. It doesn’t’ always stop the migraine, but sometimes it does. I don’t want to ever be on all the medication I was in the past. I’m sticking with my prevention methods.