Part 2 Lessons Learned: Through the Eyes of a Person with Chronic Migraine

Go, Go, Go, STOP!

Let me be the first to say on behalf of all those living with migraine, we need your support. Even when we turn our heads and murmur, “I’m okay!” Those of us who have lived this way for awhile are used to just saying “I’m okay” and trying to ignore what we are dealing with on the inside.

As the one who is suffering, I will still push myself beyond what I know I should because I feel like I have to keep going. I feel this way because I have these responsibilities that are weighing on my heart. So without fail, there is this giant glass wall that eventually shows itself. And let me tell you now, when we hit this particular wall we are down for the count, likely for a few days.

How do we end up here with this wall

Simply put, we end up here from pushing ourselves too far or by trying to ignore the pain for far too long.

This happens because we have responsibilities, we love other people, and we feel obligations. In many cases we are not just someone with migraine disease, we are spouses, parents, employees, students, and various other titles. These titles put pressure on us to perform or to accomplish certain things. Those pressures are very real for us.

More times than not, we know we failed you and it’s knowing that we failed to perform what we feel is good enough, that hurts us more than the actual physical pain we feel daily. There is simply no way to explain to someone the feeling you have when you miss somebody’s birthday party or a graduation event.

I cannot express the times that I have sat on the floor and cried from a combination of the extreme pain from migraine and the knowledge that I failed to make it to some family event or occasion. I know they do not really understand why I cannot just ‘deal with it’ and come for a few hours. At the same time, I feel that I am partially to blame for this because there are those times I say nothing and just push through. I say that I am okay even when I am most definitely not okay.

But why do we pretend we’re okay

In my experience, there are so few people who care enough to look into my eyes and truly ask me if I am actually okay or not. This is why we end up ignoring how many spoons we have left and push ourselves beyond what we know our bodies can handle; we simply get tired of letting everybody down. We get tired of holding people back and being a disappointment.

I can ask on behalf of every person with migraine that you try to see how much we want to be able to do everything. We want to be able to live a normal life and function like a normal person.

We mourn over the life that we have missed out on and will continue to miss out on. We cannot help but feel the emptiness that comes with chronic pain conditions, especially those of us who are in pain daily. There is this life we had pictured and then there is this struggle that we have received. At the end of the day, we need to know that you still love us, that you understand why we couldn’t accomplish everything today, and ultimately that it is all going to be okay.

We need to know that you still love us unconditionally. 

If you haven’t already, be sure to read – Part 1 Lessons Learned: Through the Eyes of a Person with Chronic Migraine

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27 comments on “Part 2 Lessons Learned: Through the Eyes of a Person with Chronic Migraine

  1. MandieB says:

    I actually have one coworker who cares enough to notice when I’m not well and has pretty much made me leave work because she didn’t believe me when I said “I’m okay”. She kind of mothers me in a sense I guess and cares enough that I know when she asks me to go home I know I should.

  2. wappaw says:

    This article is so on point. I was just driving home today thinking of how much of my life I have missed due to migraines, as a wave of nausea passes through my stomach, and an electral current rolls across the right side of my head. I really don’t look for understanding from anyone but I do appreciate the love and understanding from my wife. She as been a trooper for over 30 years of vacations, family events, and day to day living, interupted and ruined by my migraines.
    Unless someone actually suffers from migraines they have no real idea of the feelings involved from the moment one starts to evolve, through the excruating pain of the main attack, and then the total crapping feeling of the after effect.
    All I can say is “Keep on keeping on”, and pray to God some type of cure or remediation is developed…

  3. dragonfire says:

    I have only recently begun to say “no”. People don’t understand unless you’re squinty-eyed and turning colors. And even then, why not 10 more minutes?

    You have to understand that sounds, lights, and smells greatly intensify our pain and we should be in bed. We’re sick. You wouldn’t ask us to be out with the flu, would you?

  4. Amanda Workman moderator author says:

    That’s exactly part of the problem. Since people cannot see say a broken arm or somebody fighting chemo, they do not see it as legitimate. But it is still extremely legitimate and you still need to put yourself first! It is not easy to tell our loved ones no but you need to do what is best for your health. I no longer commit myself to an event, I simply say I will try to be there. That way if I cannot I didn’t promise I would attend or do whatever it may have been. I hope over time you learn to put yourself first and to take care of yourself. You matter and they will learn to deal with it. Sending you lots of love and strength
    Amanda Workman

  5. JR says:

    I know that my darling Wife Sherri Knows & cares when I have a Migraine ,which are Daily & we have learned to live with them & she has done a fantastic Job!!! Semper Fidelis!!!

  6. Amanda Workman moderator author says:

    Caring and understanding spouses are definitely irreplaceable. Give her a hug in thanks for me too! Plus thank you to y’all for being a military family. That’s never an easy task either! Sending you both lots of love
    Amanda Workman

  7. bluebird says:

    One of the challenges of chronic migraine is the tease of good days. Instead of just a few hours in the morning, I recently enjoyed 2 1/2 days of feeling well. It was startling and a bit confusing. Ordinarily I collapse and withdraw in the afternoons, unable to focus well enough to do crafts, I can’t see well enough to read and my curiosity is profoundly diminished. Suddenly, I have energy in the afternoon, I am not in bed….What to do? Dare I start a project, imagine a life of creative activities and friendships? Feel like I have my personality available to play and contribute to my community.I have a reprieve!
    When I was hit again with the all too familiar exhaustion and poor concentration etc…I needed to cry. Acceptance is one thing and “being teased” with the freedom of a healthy life was all the more difficult to bear. But the reality that my brain can function normally and my sense of humor and “passion for life’s possibilities” is still available means I am not broken. I have chronic migraine not other neurological conditions that are more permanent and for that ultimately I am grateful. One terrific headache specialist told me that one way to know I had not stroked out was that I could have hours of completely normal functioning. Oh how precious were those days!

  8. Holly H. says:

    Very well expressed! Hitting the glass wall is a good way to put it, isn’t it? You are going through a day trying to pace yourself, but still suddenly you are D O N E. Energy gone, the ability to continue is down to just enough to get back to home base. And, get back to home base you must, for once your “overwhelmed button” has been pushed, the ability now to even cope enough to function is waning.

    That question regarding the decision of when to keep pushing and when to know not to even try is so hard… mostly because we know the answer in hindsight. I go to bingo at the senior center here in town with a friend; she loves it, and it’s an outing for me. When I took a look at my cards today, I could see right away that the ability to delineate the numbers were a struggle. By the time a half hour had gone by, I was confused as to what I was looking at, and then I actually faded out for a bit. In hindsight, pushing through today was not the correct decision. But my world is so tiny, that hour and half outing one to two days a week with a friend is golden, so I pretended that I Can Do This, when, in reality, I could not.

  9. sherose says:

    I feel the same way. Sometimes I just say, I’m ok because I’m tired of saying l feel like my head is in a vice

  10. Amanda Workman moderator author says:

    I think a lot of us do this quite often to be honest. Just because we get tired of being judged or having to explain the migraine etc. But you definitely need to remember to take care of yourself first over just pushing through. Sending you lots of strength
    Amanda Workman

  11. I can relate to every post here and can’t believe there are so many like us. Our issues are so similar. and only we know how it feels to live the life we live.
    I took the one year TAKE COURAGE COACHING course and did learn so many things about living with pain. It did help me to control quite a bit of negativity, which improved my life. But every day is a struggle
    Thank you all for being here.
    Leslie C.

  12. Amanda Workman moderator author says:

    It’s great that some life coaching was able to help you deal with your pain and the negativity that can creep up on you because of it. Considering how many of us do have so many of these issues I do wish that doctors would communicate about these struggles with their patients more but since they don’t, that’s why we are here to try to help everyone see they are not alone!
    Thank you for sharing with us!
    Amanda Workman

  13. Amanda Workman moderator author says:

    Thank you for liking my analogy. You are definitely right that it’s easier to see in hindsight when we should have called it a day. It seems like every time is just enough different that it makes it hard to know. It’s definitely hard to consider canceling those few moments that you do have out with a good friend. I’m sorry a migraine decided to interfere on that time on you. That’s never nice. I hope your friend is an understanding one and can say drive y’all home in that case etc. you definitely don’t want to drive when you’re that impacted. Sending you lots of strength and positivity
    Amanda Workman

  14. makena123 says:

    Thank you so much for posting this. It is so nice to read that there are other’s who feel like I do. My migraines never end, wake up with a bad one, go to bed with one. It never ends. Somehow I manage to work every day, but I do have to skip some activities with my son if it is a bright day outside and I feel so bad. He has seen me in tears several times, but I cannot help it. The pain is so extreme it makes you cry. Does anyone else ever feel like there is no hope left? I have tried everything imaginable to treat my migraines. I get really depressed sometimes because I feel like they will never end.

  15. Amanda Workman moderator author says:

    I think we all have those days where we feel like it’s hopeless sometimes. But, there really are a lot of new medical options now available in the US that were not previously such as the Gamma Core device. Plus they are working on the new medications for prevention specifically for migraine. So there is some hope. It can get hard to see some days when the pain is omg but look at your loved ones, people or furry ones, and remember there’s always another door or window when one closes. Stay strong honey. Sending you lots of love and strength.
    Amanda Workman

  16. sherose says:

    That is me as well. I feel as if I live in a torture I live in a chamber

  17. MiLynn says:

    Thank you for the article. When my children were growing up, I felt I let them down time after time, missing holidays, birthdays, school events, etc. Sadly 3 of them also get migraines, I do everything I can for them and am their strongest supporter.

  18. Amanda Workman moderator author says:

    It is very hard to raise children with chronic migraine and I’m so sorry that some of your babies have migraine now. I’m still very hopeful that the new medical advances will be beneficial to us very soon. But they are lucky to have such an understanding and supportive Mom! It’s always the best thing to have a Mom that is there for you, even as an adult. You stay strong over there, for yourself and your kids!
    Amanda Workman

  19. kimmysue says:

    This is so on point! I feel like such a burden to my husband and 20 year old daughter. I feel like the roles have reversed and I’m the child they both take care of me. I take it one spoon at a time but “I’m okay” is an everyday thing. Please keep writing more articles we can share with Family who don’t experience these horrible thing!

  20. Amanda Workman moderator author says:

    I’m so sorry you feel like a burden. I know that feeling and actually went as far as to have the conversation with my husband, who reassured me I was not. We do the best that we can and yes some days that ends up being more than other days but at the end of the day we still have to take care of ourselves first! Otherwise you can make yourself so sick that you’re down for days and days. I will most definitely keep writing lady. You keep reading. Share any articles with loved ones that may help. That’s definitely part of what we want to help you with here. Stay strong!! Sending you lots of love and strength
    Amanda Workman

  21. Katie says:

    So perfectly said I started to tear up a bit! Keep on keeping on and hopefully those who really do care will stand by our sides. Thank you for writing this!

  22. Amanda Workman moderator author says:

    I’m so glad this article related for you. We definitely hope here that some of our articles can reach loved ones and make a difference in how they understand what we go through. Stay strong and hopefully together we can achieve it!!
    Amanda Workman

  23. Eric says:

    Thanks! This was so well articulated – this is just how I feel, time after time. Reading this made the burden just a little easier to carry. Thanks again!

  24. Amanda Workman moderator author says:

    Thank you so much for taking the time to read the article and comment! I’m really glad it resignated with you so much. You are definitely not alone. I definitely hope you can remember that on bad days. Sending you much love and strength
    Amanda Workman

  25. Luna says:

    “I’m not ok but I am ok.” The only constance is change. This is just normal but scary at times. Courage.

  26. Amanda Workman moderator author says:

    I can definitely understand the first part completely. You can only go one spoon at a time and each day may vary on how many you have available. Stay strong. I know you face a lot of challenges. Sending you lots of love
    Amanda Workman

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