Family members frustration with my migraines
Greetings, First - thank you for having me. I have had migraines for about 5+ years now. I'm not sure why. Photosensitive, allergic to everything, can't even be on a boat, get vertigo that easy, too much salt and some foods give me migraines. Stress too. Not sure if it was a post menopause thing but drs. said no. I am 59, husband 64 (fit as a fiddle, never sick, still working like he was 30), and we have four adult children who have come to understand my condition. One of my daughters is a doctor, so that helps, but is rather cold ("nothing you can do, so deal with it"😉, my other daughter is extremely sympathetic, so that helps, poor kid gets them occasionally so she understands the pain, sons are so-so. They have learned to live with Mom's migraines. However...husband. In sickness and in health....um...remember that line? He acts like I'm ready to be put in a nursing home, or making this up, or trying to get out of doing anything, and when I do feel good, gets frustrated that I don't want to go run around like a chicken with my head cut off because I know...um...a long drive in the sun will probably bring on a migraine, going to a noisy restaurant or crowded festival isn't my cup of tea either. I have learned to manage my migraine symptoms as best I can, so that part, managing (i.e. ok, go to festival but not for long, but that is never the case, once there...we are there all night...he just does not understand.) He has ADHD, so is very hyper. We are total opposites. Marriage was fine until this migraine thing. I was very active too. Retired a few months ago, daughter married in June, and I swear, I'm still recovering from it all, between retirement (forced, laid off) paperwork to fill out asap, then a huge screw up in paycheck, then all the planning and put togethers for wedding (I ironed 40 tableclothes)...social interaction and music and no sleep wedding weekend, I've had migraines every week now. This last one was a doozy, it hurts to the touch, only today do I feel well enough to get on this page. I've had botox and everything, nothing helps. But does anyone have a spouse that gets angry when you have a migraine. I mean, I asked my husband to pick up Nilla wafers for nausea and he said he would then when he got home from work laughed and said oh I forgot...very smug this time. My son went and got some. Sometimes my husband can be great (when I was working, he blamed it on work, so that was ok, now I think he doesn't know what to blame it on), and yes, he is a "fixer". I feel like one of the things he can't fix, so I'm "useless". Yes, he has used that word. It hurts, and its (I think) verbally abusive to say things like that. I've tried educating him. His coldness and "disgustedness" makes the migraine worse when I feel like I'll be "in trouble" for having one. I missed my daughters birthday dinner and she understood, but he was rolling eyes, "whatever", etc. I did read that yes, its frustrating to not have your partner like they used to be...but you are the one physically suffering, so I get both physical and mental pain, not just the loss of partner - and I try to remember that. I just wish I had some comfort during these migraines. Since this is such a source of contention I've told him divorce me and marry someone fun - I want you to be happy. He said "the kids would kill me". So...I'm glad you are staying with me just because of what you think our kids will think. That wasn't exactly the response I needed...anyone else out there have an angry spouse?
Oh
, I am sorry you have a very unsupportive spouse. It is difficult when support around you becomes contentious and hostile. I truly feel for you. My first thought was this, how are you managing these migraines? Are you seeing a migraine specialist to come up with a treatment plan to ease the chronic/episodic migraines? Are you trying to manage them yourself? How difficult it must be for you.
Have you considered counseling to help you through? It may be an option, even if your husband doesn't want to attend. Finding ways to move forward, accept what is, and to learn what you are capable of currently while managing chronic illness all the while not losing your sense of self is EXTREMELY important. What are you doing for self-care?
I am sending you thoughts of understanding, wellness, healing, and well-being. I certainly hope others log in and offer up their experiences.
Thoughtfully, Rebecca (team member)
P.s. I thought this article may offer you insight into some self care.
https://migraine.com/living-migraine/3-types-self-care
- Hi Lisa- Thank you so much for sharing some of your journey with us and opening up about what you are facing currently. It can be so tough to navigate life with migraine, period- harder still to be doing so with a less than supportive spouse. Interesting to hear about the various ways your children have responded, as well.
It must be difficult, indeed- to try to learn how to manage a very complex neurological condition for you as it has hit you later in life and later in your family's life and later in the life of your marriage.
I have had migraine since childhood and though it got worse over the course of my marriage (indeed it became chronic during my pregnancies), my husband knew what he was getting when we married. That actually didn't make it easy and after over 20 years of marriage, our union ended five years ago. I shared some about my journey in an article which I'll share with you here as perhaps some of the dynamics will resonate with you: https://migraine.com/living-migraine/divorce-excuse.
All that said, I'm certain there must be some unique complications that come with a chronic pain condition that arises later in the marriage. It sounds like your husband isn't handling it in a way that is supportive or helpful for either of you. This is a condition that is not your fault after all. I can relate to what you shared and I found my own husband's baggage about my condition too heavy to bear as having migraines was heavy enough.
Have you considered pursuing couples counseling? Migraine is so hard, and marriage is hard too! Having some help from an unbiased source may give you some useful ideas about how to transition into this new reality you've found yourselves in.
My ex and I were opposites also - which didn't help matters. I hope that counseling (for you individually and as a couple) may support and assist you through this. I will also say that my perspective- (as someone who has gone through separation and divorce - which seemed like an impossible nightmare before it happened) is that I'm now happier than I ever was before while living on my own. I'm released from feeling guilt over something that was never my fault and something I cannot control. I have been able to make my life exactly how and what I want it to be. I'm close as ever with my kids- and though I'm still managing chronic daily migraine, I feel more emotionally healthy than ever. It's a relief not to be counting on someone who isn't and doesn't want to be coming through for me. I don't at ALL mean to be encouraging you in this direction as everyone is so different. Just to share there are all sorts of possible outcomes that can occur and sometimes those that are most scary can turn out better than alright.
Again, I tend to think counseling would be the best next step to see if you both can get on the same page - and can clear the way so you can both better communicate about your feelings and needs.
In the meantime, we are 100% here to provide information, support, and compassion to you. Hope you will stay in touch and let us know how you are doing. Thinking of you- Warmly - Holly (team member)Thank you so much Holly,
I appreciate you sharing your story and it resonates 100%, and I'm sorry for your situation although you pushed through! Good job! I'm like in limbo. When my husband is away (hunting, fishing, extended time)...I feel so relaxed. No pressure. Never have a migraine. My schedule is my schedule and I don't have someone saying "what did you get done today", or "are you going to lay around in bed all day", or "look at me and see all my big accomplishments, what did you do?" (are we a team, or opposing sides and keeping score?). When I worked...well, I could say I was at my job. Now...of course he sees me as doing nothing. As us migrainuers know...keeping the house, making dinner, running errands, all of it...can be a struggle but is unseen as an "accomplishment". And we "look fine". Here is the other problem. He retired at 55 but went to work for some wealthy people who wanted odd jobs done. They paid very well, the owner of this company they owned got along well with the husband. Husband had Type 1 diabetes and passed away a couple of years ago. Oh my, made me realize how much longer money can keep a person alive and comfortable - yes, I was sad for the owners situation but nothing like installing an elevator in your home because of amputations (my husband installed the elevator and was the their hero). Bought a tricked out van, etc. Had every possible surgery and treatment to live longer because they could afford it. And...to put it in perspective, his wife spent $35,000 on an operation for one of her horses. Well the owner of the business passed away. Wife on her own very comfortable. Still employs my husband. I don't think there is anything going on as she is about 10 years older than my husband, however - I always feel comparison, whether it's in my head as jealousy and resentment because she is 100% active - I have to hear how she cleans the barns, etc. and is soooo active and loves to travel and is social, etc. So I always feel compared. That, and if I had more money...I'd have the luxuries to make my condition tolerable. I KNOW my husband likes her company because when he picks up his check from her it's a gab fest and it takes him a good hour. And...we did almost reach a breaking point when the owner was still alive. They took my husband out for dinner (I'm never invited), to then go look at some property because they wanted his opinion prior to purchasing it. I had a medical emergency with one of the kids, tried calling him 10 times. He had turned off his phone. Then, at Christmas, after the owner passed away...his wife took my husband, one of her friends, and one of the other handymen out to dinner. I actually was invited, but had a migraine. My husband went anyway. I felt like they were all double-dating, a foursome. Am I wrong...I would not have went if it was the other way around. Our marriage had been so solid that it wasn't something we would have done, we were quite old-fashioned. Also, when the owner's son got married...my husband did all the labor for the wedding, etc. all summer prior for the venue - but day of wedding, all fine, eat dinner, then "BANG" dueling pianos. My head burst. It was a good exit time, and I said I'd like to go home, and he said fine then go home. I think it was then that I realized how things had changed. We never go to events alone. He proceeded to get so drunk that our daughter had to go back and get him at 2am. Of course, he went on and on about how he danced with the wife of the owner. This comes from someone who does not dance. Does not dance with me at weddings, etc.
That said - it was put my foot down time. We have kind of worked it through, but I just feel this "I'm here out of sense of duty" vs "I'm here because I love you no matter what". And yes, I try the reversal, like what if he had my condition, or worse, and I'd deal with it. I didn't marry him for money or walking or talking. What always worries me is that I don't think he could handle anything worse.
Back to present day, as in this week. Husband talks to non-doctor daughter behind my back about my migraines, he admits it, which makes me feel just great...both say "must be allergies"...if you took Benedryl you'd be ok. Daddy's little girl sides with him as she says allergies give her a headache and the pollen count is up. Put two and two together. I do think it's funny that he won't talk to the doctor daughter or any other of our kids about it. But they don't realize they are are talking to someone who had a major nerve numbing procedure done as a last ditch effort, been through botox, you name it, poked with needles so many times, I've done everything. These aren't just "headaches". And yes, for the 100th time, I know I'm "no fun". Now...he just stopped home to see what I am up too. (I had a killer migraine past two days, feel better today). It's not a "checking on you to see if I can help or I can get you anything" visit, it's a "what are you getting done" check in. Personally I was proud of myself as I've cleaned the car, done laundry, and I'm going to the library. He literally laughed at me, and of course he wants praise for any job he has done around the house.
He won't go to therapy - so I apologize for the venting. I have the "migraine hangover" too, so i'm crabby. If I had my way I'd be sleeping and kicking this migraine out for good. Feels like it could return at any moment.
Again, thanks for letting me vent - and I feel like I have a safe place. Us miganiuers haven't liked our lives turned upside down either. I miss being in a boat, taking long drives, etc. My family farm is 2.5 miles away, but sun and curvy roads scare me. So I don't visit like I used too. I LOVE dark and rainy days. So when everyone says, oh it's a nice day lets do this this or that, I'm like...I'm going to puke. It's depressing for me too. And I do not mean any disrepect in any way shape or form, but we don't have a "disease" like cancer or MS, so no sympathy here.
Again, thank you for letting me vent and sharing your story. I will try to have some more discussions with my husband when it is good timing. Knowing that I'm not alone, not crazy, means the world to me. May your kindness come back to you!
-Lisait just gets worse...omgosh...I printed off "9 Things Someone with Migraine Wants You to Know" because it hit the nail on the head (no pun intended) and was an easy read and my husband exploded "I KNOW what a migraine is". (Really, ever had one?) "You just take everything I say the wrong way". (I know there is a word for that, he is deflecting or whatever, I think he wrote the how-to manual on that one), so I basically shut down on trying to educate, the conversation, etc. He enjoys arguments and drama and I just won't go there, which annoys him more, but it just gets immature. And...affairdar...last night it took him 2 hours to drop off equipment to Widow Moneybags, which should have taken 1/2 hour...without me bringing it up even our 35 year old son said "hmmm guess dad is having sipping wine with you know who" (she loves her wine, of course, I don't). Sorry to vent...but even if nothing is going on, the connecting with others, because I'm "no fun" hurts. The son that lives with us is sobering up (2+ months sober!), a first - I'm so happy about that, we have been battling this for more years than I care to remember, but now it's like Dad is the odd man out because he doesn't drink, and I know he feels awkward (so be it!). I'm off subject now, but venting is preventing my soon to be full-blown migraine. Thanks for listening. Hi Lisa - So sorry to hear your well-intentioned attempt to help your husband more fully understand what you're up against backfired. It sounds like you were met with defensiveness instead of the compassion you were seeking/needing. Kudos to you for trying to find resources to share with him. That is exactly the kind of approach I encourage - that people find articles that resonate with them to share with loved ones. These unbiased resources can sometimes help increase understanding in a way we can't do on our own. It can help our friends and families better understand that we are not the only ones who are living with this condition- indeed that we are part of a much larger world of people (over a billion!) living with this disease. And, as you and I were discussing earlier- it can help others understand that this condition is not something we are causing.
Ultimately, I encourage you to continue to seek resources that resonate with you - and deepen your own understanding of this condition and how it has impacted your life. As you continue along this part of your journey of discovering more about migraine - all it has taken from you- as well as all you have learned from it- and all it has given you - you will be stronger and wiser for it. A lot of what you've shared in the last few days has shown a lot of wisdom, insights, and growth in this way. I applaud you for doing this kind of work and reflection. We are honored to be a part of your journey. Warmly - Holly (team member)
Oh Holly...I could have written what you just did too...yikes. Right now I feel like he is only staying in our marriage because of what the kids would think (our one daughter just got married, one due to get married in April, "how could Dad abandon Mom"😉. It's like he is waiting for me to file for divorce so he can point a finger at me.
But like you said...right now...so many changes at once. I'm taking it one day at a time. I'll at least wait until after the April wedding...but Holly...I've even said...hey, if you would be happier with someone else who is more active, etc. go for it! I love you and want you to be happy. If I can't make you happy anymore, let's just get real. All he said in return..."the kids would hate me". At our daughter's recent (June) wedding...I'd been waiting for him to see me in the MOB dress I picked out with my daughters (they were as happy as me), it was beautiful, we were all giddy about it - I've NEVER had a nice floor length dress (never went to high school dance, etc). Wouldn't let him see me in it before the wedding (although he never asked either), but at the wedding...he didn't say a word. When I said "my don't you look handsome", all he said was "thanks"..."oh I think I see so and so over there". (Ms. WidowCash wasn't invited to the wedding LOL, so it wasn't her). And that said...too many things do add up. Not obvious, but they add up over time don't they. We aren't stupid.
I did just go to the library and started reading (before I get another migraine), A Brain Wider Than the Sky, can't hardly put it down it is so relateable.
This forum, and your support and mirror-image story and relatbility, have been the best medicine. On a practical note, my routine is shut blinds, motionless in bed, Ubrelvy, Promethazine, Clonazapam. But again, knowing I'm not alone has saved me from the "is it even worth it to stick around" thoughts - we are all in this struggle together.
Funny thing - my sons are the most compassionate. My oldest son - I cancelled on him yesterday - he said no worries. The younger son ALWAYS asks if I need anything (he is 35 but still lives at home), so is always willing to pick anything up, which helps. But again...not really anyone to talk to (as you can tell LOL!).
And funny story...at my former employment...when I said I had a migraine, one of my employees was compassionate...the other...omg a fruitbag. He told me to drink caffine packet after caffine packet after caffine packet. And I don't think he realized he usually was the cause of my migraine with his non-stop talking due to his consumption of his cure-all caffine!
I feel a weight off my shoulders, comforted, and calm after talking to you.
What is your migraine routine, triggers? How do you deal with the triggers?
THANK YOU from the bottom of my heart. I needed an outside party to shed light for me.
-LisaHi sweetie! So sorry I couldn't get back to you yesterday- I'm sure you understand more than most that I was trampled by a migraine attack. Still rough today so I'll keep it short- but just to say- I so completely relate to all that you've shared. I have two boys and find them to be deeply compassionate and loving as well.
Also- regarding your husband not wanting to be the bad guy? Isn't that just the bee's knees? I had to giggle at this because my ex- after I caught him cheating- suggested we continue living under the same roof while he continued his other relationship ?!?!? because having it all was working for him and he didn't want to be the bad guy for the kids (or in public) and end our marriage. Ultimately I had to kick him out! Wild. There was an extreme level of narcissism going on there.
It does sound like you've got a lot of life changes in front of you with another wedding on the horizon (congratulations, by the way!). The story about the dress broke my heart- but I can unfortunately relate to that too. My 21st wedding anniversary was a few weeks before our marriage exploded- and I had to force him to make plans to celebrate (I of course now understand why but at the time I was so hurt). I bought such a nice dress and it was like I was invisible. He was so checked out of our marriage by then, and I was in denial and was trying so hard. It was an awful dynamic. I look back at that time and am sorry for what I put myself through. It was humiliating. I'm so sorry your husband didn't properly see and acknowledge your beauty and all you had done to be there for that special important family day. There's nothing like throwing out a compliment in hopes of getting one back just to hear silence. Oomph. Been there.
I've never heard of Brain Wider Than The Sky- tell me about why it resonates with you?
We'll have to get into work stories later! Navigating ignorant coworkers- and bosses- phew. I'm interested to hear about your former career.
We also have a similar treatment protocol. I have chronic daily migraine so live with some level of moderate to severe pain around the clock. I take a CGRP as well - though mine is Qulipta. I also take Phenergan (does it make you have to sleep for 6-8 hours after taking it?). It wipes me out and unfortunately, I have to turn to it frequently as I have nausea and vomiting quite often. I take several other preventatives and rescue meds. My migraines are super stubborn.
We're 100% here for you. I'm so glad you found us. You will find we have a great team of people at migraine.com and our community is wondrous too. Most of our team also lives with migraine so there are days we go in and out of being able to respond immediately- just like, I'm sure, you do. But we have a deep bench of terrific folks. We're all doing the best we can to manage this harsh disease. Connecting here- finding kindred spirits truly makes all the difference. And I'm truly glad to have found you! All love- Warmly - Holly (team member)
