I can’t remember what it feels like to not be in pain. I’m 31 years old and for the last 16 years I’ve had a headache that has never gone away. I realized recently that I’ve spent over half of my life battling this chronic pain. I don’t think a lot of people truly understand or believe how this can be. How can someone have a headache all the time? But for some reason, this has been the course of my life. The intensity of my headache waxes and wanes depending on the time of day and about 100 other factors but it never fully goes away. And it always gets worse as the day goes on, until it’s almost unbearable in the evening.
When most people get a headache they can take a Tylenol or Advil and the discomfort subsides. Things like this don’t even touch my pain. Even strong prescription medications don’t fully get rid of this headache, they only take the edge off. And the fogginess and side effects that they cause are not what I consider fun.
I’ve even been hospitalized multiple times at one of the country’s top headache centers, where a continuous infusion of lidocaine and other medications was pumped into my veins for 10 days straight, until I literally began to hallucinate, all in an attempt to break the chronic pain cycle. My first stay was briefly successful, but the pain eventually came back and I couldn’t take the intense side effects of the medication they sent me home on to keep the headache away, so I was back at square one. Oh how I wish popping a Tylenol would help even a tenth of my pain.
I often find myself wondering what it would be like to not have this pain. To wake up in the morning and not dread having to drag myself through another day of unending hurt and fatigue. Ah yes, the fatigue – I forgot to mention this. I live in a constant state of tiredness and have been told it is my body’s response to constantly fighting this pain. Do other people actually wake up in the morning excited to face the day, with energy to tackle all of their tasks? This is something I can’t even conceive of.
These past six months or so, I’ve felt that my purpose in the world has disappeared. I used to work as a case manager with elderly and disabled individuals, a job that gave me meaning and purpose. It also took my mind off of the relentless pain. However, my health declined so much last year that I had to quit my job. I was devastated.
My life since then has consisted of constant medical appointments, tests, therapies, and lots of time spent in bed. Every week I get a needle stuck in my arm for the infusions that I give myself each day in an attempt to help some of my symptoms. My arms are so bruised up, luckily it’s winter so people can’t see what looks like the track marks of a heroin user. Most days I have an IV line hanging out of my arm and have to wrap myself in Saran wrap to shower.
My lower back currently sports eight puncture wounds, from my recent hospital stay where I was stuck so many times in an attempt to correct a test gone wrong and patch a cerebrospinal fluid leak. I will spend my birthday this year in the intensive care unit, after a probe is stuck in my skull to test my intracranial pressure.
I am tired. Tired of being poked and prodded, tired of the constant pain, tired of doctors not knowing what’s wrong with me, and tired of people saying, “but you look so young and healthy”, when in actuality, I feel like I’m dying inside. I am tired of feeling like a bad wife, of missing out on family events, of laying in bed, watching my friends on social media living full lives, posting pictures of their children, and aching inside for the life I had imagined for myself before I got sick—a life as a mother.
These past 16 years have been so hard, and the past six months, the hardest of my life. But I know that they have made me who I am.
All I know for sure is that I have to do something with this pain. There has to be a purpose, a reason for all of this. And that is why I’m telling my story now. There just has to be some kind of purpose in all this pain.
Thank you!!!!! You have said it perfectly! I also had to leave a job working with individuals with disabilities. I myself am disabled due to these constant headaches! I have become a hermit. I leave the house for doctors appointments. I love my church but the lights and fans kill me! Today the sun is shining. Off the snow. My headache loves that fuel. I hide inside. I have one friend and her family that have stuck by me. I am lonely, depressed, discouraged. There are all the new meds out but not available here. Pain clinic says it’s not their problem. Neurologist says take excedrine. My hallucinations are now talking to me. I talk back. My doctor says keep a log. I have a headache log. A food log. A log of my feelings. A journal of my life. A journal of uplifting sayings that don’t lift me up. I am sick and tired of being sick and tired.
Thank you for letting me vent. Your posts could have been written by me! Nice to know I am truly not alone!
Sabrina,
Thank you so much for sharing your thoughts. I’m so glad that my words helped you to not feel so alone but at the same time, I’m so sorry that you are going through this. I know how discouraging and lonely it can be. You definitely have a friend in me from now on. I’m so glad that you found my blog. You said that the new migraine meds are not available where you live. Are you not in the United States? I know that here, a lot of insurances aren’t covering them but Aimovig has a program that will send it free for a year.
I am also very sensitive to light and sound. I have to wear my sunglasses constantly. I’m sorry to hear that it keeps you inside feeling like a hermit. Sometimes online groups like on Facebook can help you feel less alone if you can’t get out. Please feel free to email me any time you want to chat. I will pray for you. Don’t give up hope. Maybe the new migraine meds will be available soon where you are and really help you!
Hello! Thank you for your kind words!!! I live in a small village in northern New York. The doctors here are in the dark ages! Botox is the treatment of choice. Hopefully we move this summer to Kentucky! They have a headache clinic in Lexington that is in the top 5 in the country! Sunday was a beautiful sunny day but for that reason I was unable to go to church! My dogs, both rescues, are a huge comfort to me! Thank you for your thoughts and prayers my new friend!!!!
Hello! Thank you for your kind words!!! I live in a small village in northern New York. The doctors here are in the dark ages! Botox is the treatment of choice. Hopefully we move this summer to Kentucky! They have a headache clinic in Lexington that is in the top 5 in the country! Sunday was a beautiful sunny day but for that reason I was unable to go to church! My dogs, both rescues, are a huge comfort to me! Thank you for your thoughts and prayers my new friend!!!!
I have a granddaughter who has terrible headaches going through what you are it’s horrible in an out the hospital I pray they find a cure it’s very painful to watch an not be able to help her her
Hi Meredith,
I’m so sorry to hear that your granddaughter is going through this. I can’t imagine how hard it must be to watch someone you love suffer and feel like you can’t help. I would say that you CAN help though, and the best way is to make sure that she knows that you empathize with her and believe that her pain is 100% real. It can be so hard with an invisible illness like migraines and I think a lot of us who have them frequently learn to put in an act and we appear better than we actually are because we don’t want to appear negative or make people feel sad when they’re around us. So it makes it hard for people to know what we’re really going through. Just continue to let her know that you see her pain and you’re there for her. She is lucky to have such a caring grandmother. I will never give up hope for a cure!
Omgosh! I am in constant pain myself and feel like I’ve tried every medication and/or treatment except a hospital stay. It’s so relieving and heartbreaking to know I am not alone and that someone gets it!! Thank u for this 💕
Hello, I just read this and it helped. I have really hard days. I have chronic and vestibular migraines. Everyday is hard. I have tried so many things. I just tried amovig and that didn’t work. I do get tired. I do have my husband and he understands a little. Sometimes it’s really lonely.
Marcella,
I’m so glad that you found my blog but sad that you have to suffer too. I also tried Aimovig and it didn’t help. I just keep hoping that they’ll come out with something new that WILL help one day. I feel like I’ve tried everything too. It is so frustrating. And lonely. But please know that you’re not alone. I’m right there with you! Maybe one day someone will figure out how to help us. Keep fighting!