I have enough.. Am I being unreasonable??

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Nika1995

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Hello Everyone,
I apologize in advance if this post will be hectic however English is my second language. I just had a big fight with my husband because he promised to his brother that we are going to attend his wedding in Pakistan this year along with our children aged 4 and 1 year old. I've just been diagnosed with fibro in June so I'm still trying to come to the terms that I'm going to be in pain for probably the rest of my life. I just feel like my husband does not understand what I'm going through every day. I can't walk for more than 5 minutes and my legs are constantly burning. How am I supposed to travel 8 hours by plane with two young children while being in pain to country that has completely different weather, food (I suffer from IBS) and time zone! It's like fibro sufferers worst nightmare.When I explained to my husband that he can go but he should not assume that I will also come with the kids he said that I'm just headache. I was crying for an hour because he's acting like I'm the problem but was I asking for this condition? I'm the one that is in pain and I actually got fibro after traumatic birth of our second daughter. Am I being unreasonable? Would anyone of you just go for it and travel? Fibro flare can be terrifying let alone imagine being on the other side of the world far from the comfort of your home.
 

Lemon

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Hello Nika, I can’t imagine how hard that would be for you, and hope your husband can understand. However hard for him it is, I hope you can find peace and stay where you need to stay, to feel a lot better
 

sunkacola

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Hi Nika,

You have encountered the thing that is probably the most commonly found in all people with FM.

We are all different in our types of symptoms and what helps with it or doesn't but just about all of us have experienced someone who doesn't understand, doesn't try to understand, and/or who blames us for what we are experiencing. So at the very least, please do not feel alone. You have a great deal of support here!

To me, the most important thing is for you to take care of yourself.

If I were faced with something like this, these are the things I would consider:
1) If I felt that I would not do well with the trip, and would be miserable, I would be very inclined not to go.
2) If I thought the trip might make things worse for me, I wouldn't go.
3) If I had a partner who was not being understanding of my situation when I was at home, I would definitely not want to put myself into a situation where I would be away from home, and additionally in a situation where everyone else would be upbeat and celebrating and expecting me to do the same, as this would be very stressful - which would make me feel worse physically as well as mentally.

Bottom line: if your husband is this lacking in understanding now, think how much worse it could be for you if you go, and feel terrible, cannot participate fully, and he gets angry at you or blames you for that.

If possible, the trip regardless, (meaning whether or not you go) maybe you can sit down with him (and perhaps your doctor as well or an understanding friend or family member) and have a real heart-to-heart with your husband, explaining to him that this is real, and you are not imagining it nor faking it. That you need his understanding and patience with you because you are having to deal with something that requires you to be patient with yourself. That you may not be always able to do what he wants when he wants it, and he needs to reconcile himself to that, just as you have to for your life. Ask him to imagine how it would be for him if he were constantly in pain, and how he would need your understanding.
Some people come around in time, and are supportive when they fully realize it is real. Others don't. You can only try your best, and at the same time take the best care you can of yourself.
 

JayCS

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Hi Nika, I know some fibromites seem to be able to do a little bit of traveling, but I can't at all (a one hour drive is pretty tough for me), so I very much understand: mattress, food, not being able to self-care like at home, to rest properly and intensely, even the air.
I guess tradition, rituals & politeness etc. are the driving force for your husband. He's come out of a call with "your other world" and said something coming from there. Pretty sure his brother knows nothing about what you're going thru and your husband has not talked with him about it.
I like @sunkacola's idea of not talking directly with your husband about it, but with your doctor. Firstly just for the diagnosis and what it means for you in all depth. And only in the end about the impossibility to travel.
Another idea might be to do a test traveling for a shorter time. I discussed traveling with my psychotherapist and we worked out to make it clear that there is no way that I can now drive to the sea with all the wind and to try short trips very near home and self-caring as much as I can in the process. I communicated my symptoms clearly and this made it clear to my wife where my limits are and what happens. E.g. on holidays/vacation: if I can only go out for an hour or so a day due to the pain of getting there, then she will have to go out alone or reduce the type of activity. To build this up it may be necessary to learn to vividly describe how you are feeling (first to yourself, then communicate this to others). In my case, my wife is very empathetic, so sees it even before I feel it. That's maybe a sign of a truly loving partner.
Another - unlikely - idea is if you know anyone in your family who does understand how severely fibro is affecting you and can help put it across - if not to your husband then praps to his brother.
 

CreativeOne

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I didn't know this could also be triggered by giving birth. I have had 6 whiplash injuries, this all muscle connections to top of head and bottom of my ribs are fraught with trigger point knots. And oatmeal, hersheys spreads and corn trigger all over body pain. I googled them for common ingredients and it came to be high amounts of soy lisathin in hersheys and highest amount in any food in Oatmeal.
 

sunkacola

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I didn't know this could also be triggered by giving birth. I have had 6 whiplash injuries, this all muscle connections to top of head and bottom of my ribs are fraught with trigger point knots. And oatmeal, hersheys spreads and corn trigger all over body pain. I googled them for common ingredients and it came to be high amounts of soy lisathin in hersheys and highest amount in any food in Oatmeal.
Creative One, you might want to start your own thread to discuss this, as it is off-topic for this thread. Thanks.
 

rhiannamaree

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I had this same issue with my partner, over Christmas, I had a a massive fibro flare due to two types of tendinitis and bursitis in my right shoulder and narrowing of my shoulder bone.
I am still struggling every day with complete body aches mainly in the neck, head shoulders and calves. Previous to this I had my fibromyalgia under control for 6 months so it caused my mental health to deteriorate as well.
Leading up to our flights before Christmas my anxiety was out of control not knowing whether I would be able to handle my fibro, my three children and travelling in the middle of a pandemic.
I ended up having a nervous breakdown which made everything even worst but I decided to put my mental health first and didn’t attend Christmas with my partners family in another state.
We now have his brothers wedding coming up in March and his family are expecting me to show up but I am still not well and am dreading the thought of travelling during covid, we also have a child with cystic fibrosis and I am petrified of any of us catching covid, yet his family still try to pressure us.
My personal opinion from last experience is your health must come first regardless of who it might let down.
My partner has only now been supportive of my FM since I asked him to research it and to try and gain an understanding of what I am going through and we have been together for 4 years and I’ve had fibro for 6 years and diagnosed 4 years ago maybe having this conversation with your partner and having him attend doctors appointments so it is explained to him by a health professional. Sorry for the large message.
 

sunkacola

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riannamaree, good for you for not doing what you know is not right for you to do.

As for the pressure from the family members, here's a little trick that I have used to deal with anyone who is being insistent and trying to push me in a direction I am not going to go:

First, of course, there is a conversation in which I explain very thoroughly my reasons for making the decision I have made. I make sure they understand. Then, if they simply continue over and over to try to pressure me into changing my mind, ultimately I do this:

I choose one really polite, short and reasonable reply, such as : "I am not going to go this time because it would be injurious to my health and well being, and I will not change my mind so please respect my decision."

Or even shorter: "I have decided not to go this time."

Then, no matter what they say after that, I just repeat the same exact phrase, over and over. Word for word, the same phrase or sentence. Pretty soon they stop, because they cannot get anywhere and you are not engaging with them. If you argue with them they will only keep at it.
They may think you are being obnoxious, but they are the ones being ridiculous. If you have thoroughly explained, you do not need to feel obligated to explain any more or to engage in any further conversation.
 

rhiannamaree

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Thank you Sunkacola I will definitely use this the next time my mother In law calls as she is the one that had been pressuring me. Your very right every time I say it in a different way she still keeps going so I will definitely just repeat the same phrase and see if this gets through to her.

My partner has said if I am not up to it due to my health he will not pressure me to attend as he saw the toll it took on my health leading up to Christmas with the stress of going when I really didn’t want to put my self through that pain mentally and physically.

He also finally did some research and actually spoke to a friend that had fibromyalgia which really helped him understand what I am going through and has now been so helpful on my off days when I struggle to leave the bed.
I’m only 28 and feel like I’m 80 some days and it’s hard for people even my friends to see that as I look fine on the outside but am not on the inside.
 

sunkacola

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Yes, that is the thing about this syndrome. For a large part of the time for most of us it is invisible. We look fine and it's hard for people to believe we can be in that much pain.

the other thing about repeating the same phrase over and over is that it is kind of fun. It can take the sting of anger out of the whole thing for you, as you can turn it into something that can be amusing.....to you, even if not to them.

And if they ask you why you are saying the same thing over and over, you can just say, "Because that is all I have to say. I have explained this to you thoroughly, and have no more to say about it."
 

LolaMerle

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Nika and rhiannamaree: I have to say, as I am going through a flare-up and unable to be productive in any way, I am amazed at what you must go through when you have children to take care of, and especially rhiannamaree, with a child with cystic fibrosis! Just dealing with fibromyalgia on a daily basis and also taking care of children has got to make everything 100 times more difficult. And then being expected to travel at the same time? I can’t even imagine! I am a grandmother who raised my grandchildren (who are grown now), so I don’t have that extra job of taking care of children. My husband is so supportive and wonderful and he is willing to learn about fibromyalgia along with me, and no extra requests are made of me when I just need to rest. I guess I just wanted to send extra huge kudos to you mothers with fibro because I can’t even imagine having it and doing what you do!

I completely agree with sunkacola’s longer polite and reasonable response. There’s another saying that someone sent me once and I put it on the wall by my desk: “Pay attention to when people react with anger and hostility to your boundaries. You have found the edge where their respect for you ends.” There might not be anger and hostility involved at this point, but when people keep at you and refuse to accept what you are saying, I feel that statement applies. Sometimes you have to make decisions in your life that end up excluding those who don’t respect your boundaries, even if it’s a family member, which is hard.
 

rhiannamaree

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Thank you Lolamerle, being a mum with fibro can be so debilitating some days but I just have to push through for my kids, I feel sorry for them because they don’t understand what I’m going through and why I’m in bed some days and want me to play and When it comes to my daughter with CF I feel even more guilty as I feel she has it so much harder and she is much more resilient and such an inspiration for all she has gone through and will continue to go through and shes such a bright happy young girl! My two year old is always wanting me to be playing and some days I’m dragging myself out of bed and just pushing through the pain because i don’t want her to feel I’m not their for her or don’t want to play because she doesn’t get it at this age or regret time I haven’t spent with her so I try to do relaxing tasks like painting or play dough, watching movies together etc… my partner picks up the slack when I’m bed ridden at-least and is very good with all three :)
 

LolaMerle

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Rhiannamaree, your courage is amazing and inspirational. It gives others a chance to say “If she can do that, I can do that!”. I have a six year old grandson who hasn’t had friends for 1 1/2 years because of Covid, hasn’t gone back to school or started first grade, and has basically just been isolated. My heart breaks for him, and I feel so bad when he comes over and I just don’t have the energy to play with him. He’s gotten so into playing games on his iPad because that’s all he has to do. I taught him SlapJack with regular cards and he loves it, but a lot of the time I can’t even do that with him. I can’t compare my situation with yours, but I know how it feels when you feel like you are failing your children. All I can say is do your best every day, and be proud each night that you did your best. Set your expectations lower than what they would be if you didn’t have fibromyalgia, and realize that it’s okay to do that, so that you can be proud instead of feeling guilty. At the end of the day, look at what you DID do instead of what you DIDN’T do. Although it’s hard to see it at the current time, remember that children are so resilient and when they are grown, they will look back at their time with their mom and feel how much they were loved even though their mom had health problems. If you could compare yourself with a blind mother or a mother in a wheelchair, maybe you could see yourself differently and accept what you can do and what you can’t and maybe feel less guilt? I don’t have the answers but I know those feelings can eat away at you and use up energy you don’t have in the first place. You sound like a great mom to me, simply because you care so much. Be proud of that. Your babies will see it, too.
 

rhiannamaree

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awww Lolamerle you’ve got me crying 😭 happy tears of course!
I have struggled so long to find someone to talk to that understands what I’m going through and this forum the last few days has literally kept me going mentally.
I haven’t had a flare this bad since last December and it’s been 2 months of taking it one day at a time and delegating energy to my children, house chores, health appointments and to myself, it really has taken a toll on my metal Heath this time round because of going from being fit and heathy to bed ridden with debilitating pain and never knowing what or when it’s going to happen. It’s so mentally and physically draining.
 

Edit

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Hi Nika! don't worry about the English, here I am the English is my second language too. here in the forum everybody is kind and give good advice for anybody who suffering from this terrible illness. I feel sorry for you , because with two very young children on the plan for 8 hours , different climate and time will be a lot to take. If you have to go, try a good rest before you going and maybe ask your HB help with the children little bit more then usually do. I hope the pain and everything (for me the worst the fatigue) not getting worst and in Pakistan your relatives helping you around the babies. Please take care yourself this will be a hard time for you.
 
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