Pity's not required but empathy would be nice.

Hello, everyone! I've lurked on here for quite a while and just recently signed up. I'm sorry if this turns into a big vent but I guess I'm just trying to figure out how other people have handled extending patience to people that aren't showing much to them.

About 8 or 9 months after my husband and I were married, I began having serious problems with chronic fatigue out of the blue - I went from being a healthy, active 23 year-old to a practical zombie that barely made it through the day only to come home and collapse on the sofa. I was so tired, my functioning level took a huge nose dive. As you can imagine, this put a big strain on my new marriage but my husband tried his best to be understanding while we looking for some cause. He had to take care of cooking, cleaning, the whole 9 yards practically by himself. I was useless.

After many medications, many months and many tests, my doctor concluded that I was suffering from Chronic Fatigue Syndrome and now has me on a stimulating antidepressant, which has helped - but now, after a year of pretty good progress (though it seems now I'll never be back to my original energy level), disabling migraines have shown up and I'm so fed up with the whole thing, I don't know what to do.

Before I got sick, I rarely had headaches but I was known to have migraines from time to time. But nothing like this. Every single freaking day, I have at least a very nasty headache if not a full-blown migraine. Combined with this, I have migraine-related carotidynia - where I get severe ear and jaw pain, as well as inflammation of my carotid artery, which makes speaking and eating very difficult. More blood tests and a carotid ultrasound later, still no answers. I'm currently on a pretty low dose of the beta blocker propranolol (80 mg) that keeps having to be steadily raised, with Midren and phenergen for when they break through. Obviously, this low dose isn't doing me much good.

About 3 weeks ago, I had The Big Kahuna of all Migraines that left me feeling practically drunk. I was confused, had trouble speaking or keeping a train of thought, and my recall was in the trash. My balance was shot. I made more mistakes at work in that time period that I have the two years I've been there. This went on for 3 days before I finally became so concerned that I made an emergency appointment with my doctor (honestly, I've had such bad ones that, while it was an unusual suite of symptoms, I wasn't really concerned). So he sent me for an MRI and I'll get my results on that one next week. The neurologist was concerned I had something dramatic like a mini-stroke but I'm pretty sure it was just a helluva migraine.

My husband has apparently been just about pushed to the edge of his patience with all of this. I don't want him to pity me or treat me like an invalid, but everytime he asks "Does your head hurt AGAIN?", it's like a little knife being stuck in me. I don't choose to feel like this, and I really wish I didn't, but that's the card I've been dealt for now. I'm certainly not using it as an excuse. I really do feel horrible nearly every single day, but it's as if he expects me to snap out of it or just soldier through the pain so I can do wifely things with him. I've gotten to the point that I feel like I must complain too much, so I just don't mention it much anymore. Even when I don't have an active migraine, I'm usually so drained by them or suffering from "migraine hangover" that I feel far less than perky. The intense nausea is almost constant.

Honestly, there are times that I just want to beat his head against a brick wall and give him some ipecac syrup so he understands how it feels. I know it's just the frustration talking and I really wouldn't wish this on anyone, but I guess I just need to learn how to deal with his flippant attitude better. He professes to be concerned, which I'm sure he is, but I wish he'd just extend some of the sympathy to me that he expects everyone to give to him whenever he has a sniffle.

I'm glad you posted.

My hubby doesn't know what a migraine is, but when his sinuses flare he does at least say "I don't know how you put up with this everyday". So, I do get empathy from him.

I mainly wanted to respond to you symptoms of being drunk. I was tested for MS because my balance was so bad and I was having such vision problems. All tests were negative, just a migraine. Yeah, right, JUST a migraine.

wanted you to know Im listening and I care.

I understand exactly where you are coming from. My husband is not the least bit sympathetic, he thinks my headache are something I'm doing on purpuse to make his life miserable. We've had countless arguements...and the stress level over angering him with my pain really does not help.

It's never easy on the spouse of someone with a chronic illness, but you are so right, a certain amount of empathy is expected. I hear you...and I feel your pain...((Hug))...

Firstly, welcome. I hope you find some support and help here.
Sounds as if you are really going through it.
The understanding is a difficult one, you have to hope that people like and trust you enough to empathise.
Sadly many dont. I have lost all but two of my friends.

Ity took me a long time to accept that I have Fibro and I am still in denial to some extent because the migraines are by far the biggest problem. I have a daughter in law who never knew the other me and I struggle to have a decent relationship with her because she is a mixture of pity and dismissive.

I have had my husband almost 40 years. It was 30 when I got sick. He was happy to do whatever around the house, well maybe not happy....but although he never said anything about being in pain "again", he struggled with the effect it had on "us". He stewed on it and we had a huge fight about it where it turned out everything that was wrong in his life was my fault.
The next day he apologised and seemed to have realised he was in a rut and I was a good thing to blame.
Since then he never says anything negative, but I dont feel any less gulity. "I" have ruined our lives. Cant plan for anything, go anywhere. Not had a holiday since 1992....it sucks.

Must be rough for your husband when you are so young and not been together that long. But he loves you right?
And in time he will get it.....not totally...who does? But he will. If you dont do something to him first.
Just tell him you are learning to deal with it, and appeciate he probalby feels helpless to do anything really, but ask him to be patient and support you. Men are problem solvers, you have given him something he cant solve. They find it hard to handle that. Women tend to talk about things and it makes us feel better. Men, what's the point of talking, fix it or, well I don't know what they do in their heads....one of the guys on here will tell us I suspect.
Mine has got with it now, but I know he tries to not go there too much because he cant fix it.

I dont know if you feel like it at all and if you are on Facebook , but I have a page on there for CFS with migraine, and there are a lot of other groups with a loads of info. Much more than we get from drs in my experience.

If you want to PM me I can point you in the right direction, but that of course is totally your call

I know you will get some more comments. Forum seems quiet at the moment, but hang in there.
There will be someone here who can probably advise you better.
Take care.
Pen

There is not a lot you can do about what another person thinks. The only thing you can do is take care of yourself and hope the rest follows. My first husband used my pain against me and I would hide my migraines because that is when he would pick an argument.

My second guy is so kind about it. He does'nt really do anything extra because he knows how independant and stubborn I am, but when he knows I have one, he tells me he is sorry and does do little things to pave the way better for me.

In the end, it is how I deal with it. For me, pity is poison so I only allow myself a cry a thon once in a while. I'm the one that has to set the example for everyone. I will plug on like a trouper and I've gained respect in my family. In return, no one mocks me or undermines my headaches. I don't take my anger out on anyone and apologize in advance if I know I will be short.

I'm so sorry that you are in this predicament. Keep going back to your doctor and getting on preventatives and abortives and rescues. Don't let migraines win over your life.

Angela

Welcome to the forum! Always nice to have new members. I think you will find some good support here. We all understand the frustration that goes along with having chronic pain/migraine. I am very sorry you are going through this. Espcecially when you're a newlywed! I was glad to read that you had an MRI. I hope you will post the results. Perhaps when you are feeling frustrated with your husbands comments you could vent here and get if off your chest. It's almost impossible to be able to relate to chronic pain when you've not had the experience yourself. It's one of those invisible disabilities. Again, glad you found this site. I wish you the very best. You have my complete empathy. Gail

Oh, poor girl. It's bad enough having to deal with constant migraines, but than on top of that having a husband who is sulking and moaning everytime you have a headache certainly dosn't help.

I met my husband when I have already suffering from quite severe migraines for a number of years. I told him from the start that if he can't deal with my condition there is no point in us having a relationship. He was and is still very understanding. I sometimes tell him that I feel bad for him for having a wife with constant headaches, but he immediately points out that it's me who's suffering not him. Never to this day has he ever complained about us not being able to go someplace because of me having a migraine. Our relationship has always been in the spirit of "us against the rest of the world" and we and our wellbeing take priority over everyhing else. I consider myself very fortunate for having such a wonderfull and caring husband. I had migraine surgery on June 1st (you can read about it on my thread). Incidentially this was the day of our 10th wedding anniversary. Not the best way to celebrate an anniversary, but since I consider it a lucky date I hope the outcome will be a good one.

Your husband should hang his head in shame. Instead of giving you a hard time and stressing you out because he feels inconvenienced he should make sure that you are as comfortable as possible, give you a foot/head/sholder rub, bring ice packs, make sure you are not running out of medication, etc. Has he already forgotten that marriage is for better and worse and in sickness and in health? It looks like he might need reminding.

I hope the two of you can sort this out and find lasting happyness together.

Love

P.

I'm so sorry that you are having to deal with this. I understand being a newly wed with migraines. My ex-husband and I met when I was 18. We married when I was 20. He always knew I had migraines but had the attitude that was held at the time that migraines were stress induced. Even after research proved that it is a neurological disease, he kept thinking that they would "go away" if I just handled my stress better.

He was understanding until they became chronic. Then it all became about my inability to handle stress better. Or that I was hiding from life behind migraines. It was really hard to deal with as he didn't get over that until our children also started having migraines. Even then it took years for him to get that it is a neurological disease and start treating it as such.

You at least are starting from the place where we already know it is neurological. Has he gone to your appointments with you? It is a really good idea to have him go with you as he can ask the Doctor questions to help clarify the disease for him. Also making him an active partner in treatment may bring him a bit more understanding.

If he won't go with you, come here and vent. Vent any time. We are here to listen and commiserate. You are not alone. Hidden diseases are the hardest to deal with and hidden diseases that cause chronic pain are even harder. People who don't have pain all the time don't even know what it means to hurt somewhere 24/7. The toll it takes physically and emotionally is huge. We understand that.

I hope you can work things out.
Alli

One of the ways my husband has got better with them. I get him to do the reading for me.
My concentration is crap and he learns whilst he concentrates for me.
Also he has been my detective. He has joined me in trying to find one single trigger.
We have spent 10 years charting etc together.
Not a clue!!!

As he says, an internal button is pushed and bam!!!
Hormones it was and seemingly hormones it is.
No foods, nothing.....but his involvement in this, seeing my struggle to do the best I can has
improved his tolerance and attitude.

See if you can get him more involved, worth a try.

Pen

Thank you so much to everyone for being so welcoming to me! I really appreciate your thoughts and opinions on this. I don't know anyone in my day-to-day life that experiences chronic pain, and it's hard to make someone understand something that they don't have a reference frame for.

I know that most of my husband's issues come from just feeling helpless in the situation and he truly wants me to feel better, he's just bad at articulating it. We had a long talk last night about his comments and how they can hurt my feelings - he'll say things that are "just a joke" and get irritated when I become mad at it. To me, him saying that it's like he's married to an old lady because I fuss about the volume of the TV when it's too loud for my headachy comfort isn't funny, it's just hurtful. Particularly because I'm very sensitive to my (perceived and otherwise) faults as a new wife with all of the medical issues I've been gifted with. I can find humor in just about everything but there's a fine line between being funny and being unfeeling. I'm sure you all are very familiar with the beating your self-esteem can take when you feel absolutely useless.

Of course, he has his end of it to deal with, too. Between the headaches and the medication, I'm usually pretty apathetic and just kind of want to be alone most of the time.

My MRI results consultation had to unfortunately be moved to Friday because of unforseen issues at work, so I have even longer to wait until I maybe find out some answers. I doubt it'll show much useful, but you never know. At this point, I think I'd be happy if they told me half of my brain was missing or something - just so I'd have some kind of something to attach to. This whole "don't know how or why" it hurts stuff is for the birds.

I have found that over the past 55 yrs, people that do not get migraines never do seem to "get it". Most think you are making it up and a very few really care and are concerned. Tell your hubby how you feel. Try to find some kind of pain pill that will help you get past those bad days.

As for what guys think, most young guys do most of their thinking below the belt. Some never get past that. Hope it works out for you. My current migraine has been around since Saturday. I have had them last for months. I just did what I could and forgot the rest.

Hal

it is tough especially when youre newly wed! my migs started 6 months b4 we married and i spent our honey moon in bed witha a mig. when you think and read on this forum how people feel about those who dont understand what we go through as they havent experinced the pain it is the same for our partners. one thing you never stop doing is to talk about it, weve all had the partners who have misunderstood our migs and even years into our marriage we still go through the frustrating times when special times/events that we have planned to do togehter have to be cancelled or they goon their own. education about migs is the best thing you can give him and sit down and work out about your triggers and how you change your life to live with migs. also we do have to give them a thought too as it is very hard for them living with a partner that has migs too and sometimes all they need is acknowledgement from you that you know it is hard for them too and give them a hug. sometimes all you can do is cling to eachother through the pain. x

Wondering if you ever got the results of your MRI and how you are feeling these days.

I was 25-ish when my headaches became chronic, just over a year after my husband and I were married. He's a little younger than I am, so he had to deal with a chronically ill wife from a young age, too. And my list of conditions has grown with each year of our marriage! I turn 40 next week, so that's quite a list! Ha ha.

It did help for him to try to do his own internet research along the way with each diagnosis, each new medication, each new treatment plan. Now he has a friend who is a doctor and he bounces ideas off of that guy from time to time. That's how my husband feels involved, like he's contributing, "fixing".

Anyway, just wondering how things are going for you now.

Hi, Lynelle! Thanks for asking! I started another thread, aptly titled, "MRI results were normal, of course" haha. There was nothing unusual, which is good and bad, of course. Nothing glaring to treat is a blessing but also a bit disappointing in that there's nothing to point at to say, "There! There's the answer!"

My doctor has started me on a low dose of Topamax, 25mg twice a day, and despite the fact that some have had a very hard time with it and have warned me that I'll practically turn into a slathering, rabid monster...it's going wonderfully for me so far. Really, really well. I've had several days with no headaches at all and a few headaches that went away with no abortives. The breakthrough migs have been 10x worse but I'll take that tradeoff for now! My energy level has nearly returned to normal, pre-Chronic Fatigue Syndrome levels, too, which has been an unexpected blessing. I'm not getting my hopes up too much because I'm expecting this all to balance out once the initial "buzz" wears off, but it's nice for now.