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HordesOfKailas

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Hi everyone. This is my first post, so let me introduce myself. My name is Kailas and I'm dating a girl with fibromyalgia. We've been together for roughly five and a half years and she was diagnosed just about a year ago, when she was 21.

I've done a lot of reading about how to support someone with fibro (blogs, articles, etc), but recent events have made me want to get a more...personal take on things. She fell down a short flight of stairs a few days ago and bruised her butt, and just tonight she fell off of my front step and hurt her knee. The first fall was problematic because it made sitting still uncomfortable and damaged her morale. I assumed the fall was just a fluke, but this second one really worries me as she's dealing with enough without adding on extra pain. Obviously I do the stupidly simple things like making sure she has a comfortable, padded seat and getting stuff for her when she's sore and in pain, but I'd like to do more.

The problem though is that she always tells me not to baby her, which I understand. No one wants to feel helpless at 22 and since she's a real trooper, it can be difficult. Basically, I'm trying to find a happy medium where I do everything I can without making her feel weak. She's helped me through my own series of health problems (mostly resolved luckily), so I really want to repay her properly. I guess my central question is this: Are there any special things that your significant others do (or you would like them to do) that make a meaningful difference to you? I mean, I know the bullet point stuff that comes up in every other article, but I'm looking for the smaller things that maybe make a bigger difference than they should. I know this is a super open-ended question, and I hope I don't come off as stupid, but I'm really at a loss. The standard boyfriend stuff doesn't cut it and all of the articles haven't given me as much insight as I had hoped. And I know, the first thing you'll say is "Talk to her!". I have, but I don't get a whole lot of helpful feedback. I'm sure this is because she doesn't want me to treat her in a way that constantly reminds her of the fibro. And since I can't experience what she's dealing with, I figure that my best bet is going to the source, which is you guys. So thanks a lot for any help, big or small, you can give. I plan on marrying this girl, so I really need to have a game plan in place before much more time goes by. Also, I apologize if this is posted in the wrong section. I wasn't quite sure where this belonged.
 
Hi and welcome to the forum. First off let me say how happy I am to see someone posting for info on helping their significant other, you sound like you really care and are trying to understand her condition. She is new to this also and it will take time for her to accept her diagnosis and learn her limits, be patient. It took me a long time to understand my limits, accept that I can not do as much and ask for help, she is young so it may take her longer. Just be there for her and try to do little things, cook dinner, clean the house,do the dishes, etc. These are little things that you can do without asking her, "Do you want me to....?" My husband has learned to read my body language and the way I speak to figure out if I am having a bad day and I am sure with time you too will figure it out and that is the time to offer more support, maybe run her a bath or offer her a back rub/massage. I am sure others will post and you will get some great feedback from this site.
 
Well you definitely hit the nail on the head about learning and accepting limitations. We've spent a lot of time in this last year on things like metal concerts and hiking; not fibro-friendly activities. One thing that comes up a lot is that she's afraid that these activities will eventually be off limits. This is one area where I haven't known what to say or do. The best I can usually muster is something along the lines of "You don't know how it'll progress. It'll be ok." Verbal/text communication has been extremely important because we don't get to spend much time together. We live 150 miles apart most of the time due to school (She's in grad school and I'm almost done with undergrad), so we only see each other 2 or 3 days out of 7. I've been trying to find better ways to comfort her verbally when I can't be there in person, since that's the case the majority of the time.

As far as your advice goes though, thank you. Those are all really good ideas and I'll try to incorporate them. I've actually been meaning to take a massage class (I'm really not very good yet) so that I can add that to my repertoire. Cooking has been a hobby of ours for a while and we try to incorporate that into little date nights where we stay in and get drunk and watch stupid TV. Now that I think about it though, she does cook a little more often than me. I guess that's as good a place to work on as any. Really though, thanks a lot. It's nice to hear advice from an actual person.
 
I've done a lot of reading about how to support someone with fibro (blogs, articles, etc), but recent events have made me want to get a more...personal take on things.

You're a keeper for sure. :D I think it's so wonderful that you are reaching out to find ways to help her! I'm sure she appreciates it very much.

Let's see... you're right about her not wanting to feel helpless. I think my main suggestion would be to do things you see need to be done when she's having a bad day instead of asking her what you can do. Like if there are dishes in the sink, wash them. She still may go into the "I'm not helpless!" thing, but claiming you just want to do what you can do would be the truth and she should appreciate that.

I'm thinking that a "Shall I do the vacuuming for you?" may be met with a "No, I'll do it myself!" while just getting the vacuum out and starting it may be better. I doubt that she'll wrestle you for it. :razz:

Also if you have plans and she's having a pain day, nothing is better than hearing "that's okay, we'll stay in and watch a movie" (whether or not you're living at the same place, I mean... a home date instead of going out.)

Thinking... thinking... oh yeah, having someone draw a warm bath with candles in the bathroom is always nice. That one you'll want to ask her about, though, because on the worst of days, even the thought of a soothing bath may be too much to want to deal with.
 
Let's see... you're right about her not wanting to feel helpless. I think my main suggestion would be to do things you see need to be done when she's having a bad day instead of asking her what you can do. Like if there are dishes in the sink, wash them. She still may go into the "I'm not helpless!" thing, but claiming you just want to do what you can do would be the truth and she should appreciate that.

I'm thinking that a "Shall I do the vacuuming for you?" may be met with a "No, I'll do it myself!" while just getting the vacuum out and starting it may be better. I doubt that she'll wrestle you for it. :razz:

An answer always looks so clear after someone gives it to you. Everything you said here makes sense. Thanks a lot!

Also if you have plans and she's having a pain day, nothing is better than hearing "that's okay, we'll stay in and watch a movie" (whether or not you're living at the same place, I mean... a home date instead of going out.)

Well we hardly ever go out (by mutual choice), so luckily this isn't an issue. But yeah, that's good common sense advice.

Thinking... thinking... oh yeah, having someone draw a warm bath with candles in the bathroom is always nice. That one you'll want to ask her about, though, because on the worst of days, even the thought of a soothing bath may be too much to want to deal with.

Unfortunately neither of us have baths. Just shower stalls. But this is one thing I'll put in the vault for later when that becomes an option. Thanks a lot for all the advice! This was a really helpful read.
 
I am 25 and I wish my ex (that I wanted to marry....) would have been as thoughtful as you have been just by researching and asking these very questions.... I hope she knows she's got a good one! That being said, I agree with everyone so far. I lived with my ex and he had a son... I was constantly killing myself trying to clean and cook and do all these activities just to keep up.... At first he helped with cleaning and cooking when I was in too much pain.... But after a while he got sick of me not doing enough (he wouldn't admit that unless we were in an argument and he wanted to hurt my feelings....) from time to time he would ask me what he could do... I never wanted to go too in depth about my health issues and pain with him because I didn't want him to see me as a hypochondriac.... Which didn't really help me as I thought it would, as he thought it was no big deal eventually..... Yeah I had a real winner hahaha
I did appreciate the small things though, like if I was having a bad day he might bring me a cup of tea and snuggle with me... Or a massage (the downside to his massages: they only lasted 5 minutes and I could tell he didn't really want to give me one unless he had something on his mind..........) so if you're going to give her one (if she can tolerate being touched, because sometimes even the lightest touch can inflict pain..) try to make it enjoyable and relaxing for her if possible....

I also strongly agree with learning to read her body language. This is huge. Example: my ex would think I was giving everyone dirty looks, when in reality a person in pain tends to tense up and cradle the pain... That includes your face tensing up. He would pick a fight with me about this and never believed me that it was my pain and not an attitude...

Maybe another cute thoughtful idea since you are apart more often than not, send her some 'thinking of you' cards or letters and just remind her she's special and make her smile. No need to repeatedly say 'you're strong /we'll get through this / it'll be okay' etc. That's not what we want to hear constantly. I was with my ex for 3 years and he could not verbalize how he felt about me anymore than "I care about you alot" which was only said if we were in an argument and I told him it bothered me he couldn't tell me how he felt. All I wanted was for him to tell me he loved me (I know he did, his actions very clearly said it) but I wanted it verbalized and honestly if you can find special and unique ways to tell her and show her that, you'll brighten up her day so much and that can really help lift her spirit up!


I had other health problems while dating another guy years ago and every time I either opened up or tried to vent, he automatically went to "everything's fine, you're fine, don't worry" and that was all I got out of him, when really all I wanted was for him to just listen, not say a word, and hold me or let me cry if I needed to cry and get it out of my system... You don't want to focus on the fibro constantly, but you don't want to pretend everything is fine 24/7 either.
You'll figure out a happy medium with time.

Maybe if you are really interested in cooking for her, you might try to make some meals that can be frozen and surprise her at her place with a few re-heatable meals from you for days that she's alone and hurts too much to cook!

I'd also see if maybe she would be interested in a memory foam mattress pad, feather topper, or a heated mattress pad (not blanket but it's basically a heated sheet you put under your sheets and it is basically a huge heating pad for your whole body!) personally I have all 3 on my bed and it helps when I can't get comfortable... If she doesn't have anything like that, it might make her smile at bed time knowing and literally feeling how thoughtful it was you looked into and got one! If you get one, or 2 or all 3 haha, if it helps her, invest in the same for your bed so when she stays over it is consistent and again, she will be reminded of how thoughtful you were to make your bed more comfortable for her.

I feel like I've written you a novel here hahaha. Hope some of this helps!

Ps: if there are any clones of you out there send one my way because I would love to have someone so considerate and so eager and willing to understand and help!

Never forget to give yourself a little credit for being so wonderful! Even if she forgets to tell you sometimes, she will always appreciate your efforts!
 
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Also, another suggestion, research "the spoon theory" about fibro. This can really help you understand how exhausting day to day, hour to hour, even minute to minute, can be for someone with fibromyalgia.... See if this can help give you some insight into her pain and exhaustion. She might be interested in learning about it as well so she can better describe to you and others who need to know how many spoons she's got today! Lol
 
No need to repeatedly say 'you're strong /we'll get through this / it'll be okay' etc. That's not what we want to hear constantly.

That was a great answer with some excellent ideas, katie-opny! I especially like the idea about either cooking or providing meals for her to freeze when she isn't able to do the cooking... how great would it be to go to the freezer on the bad days instead of having to throw a meal together.

Oh, the heated bedding... absolutely.

I agree about the repeated "you're strong" and "it'll be okay." I know that a lot of people do that when they're at a loss about what to say, but... well, being strong doesn't really make the pain feel any better, does it? :-( And I'm sure that hearing "it will be okay" in the middle of such horrible pain doesn't really mean much either.

Letting someone know that you're *there*... whether or not you can actually do anything to help... that's what's important.
 
An answer always looks so clear after someone gives it to you. Everything you said here makes sense. Thanks a lot!

You're very welcome, HordesOfKailas. I read through the rest of the replies and I see some really great suggestions here... I hope that some of them will help to give your girlfriend some relief... or even just feel better knowing that you care so much about helping her.
 
I am 25 and I wish my ex (that I wanted to marry....) would have been as thoughtful as you have been just by researching and asking these very questions.... I hope she knows she's got a good one! That being said, I agree with everyone so far. I lived with my ex and he had a son... I was constantly killing myself trying to clean and cook and do all these activities just to keep up.... At first he helped with cleaning and cooking when I was in too much pain.... But after a while he got sick of me not doing enough (he wouldn't admit that unless we were in an argument and he wanted to hurt my feelings....) from time to time he would ask me what he could do... I never wanted to go too in depth about my health issues and pain with him because I didn't want him to see me as a hypochondriac....

Throughout some of the reading, I've seen a lot of women lamenting how their husbands/boyfriends used to really understand and pick up the slack but eventually just stopped entirely. It's interesting you mention the hypochondriac thing though. Erin (the girlfriend) used to really worry about that because of how long it took to lock down a diagnosis. I suppose that's a rather common thread here?

Or a massage (the downside to his massages: they only lasted 5 minutes and I could tell he didn't really want to give me one unless he had something on his mind..........) so if you're going to give her one (if she can tolerate being touched, because sometimes even the lightest touch can inflict pain..) try to make it enjoyable and relaxing for her if possible....

Yeah, I haven't done much as far as massages mainly because I'm not good at them haha. I've tried a few times, but I guess I'm kind of heavy-handed. Definitely one thing I plan on actually learning. It seems to be a pretty universal piece of advice.

Maybe another cute thoughtful idea since you are apart more often than not, send her some 'thinking of you' cards or letters and just remind her she's special and make her smile.

That's a really good idea. She actually sends letters to a friend who doesn't use Facebook or e-mail much. Thanks so much for meantioning this. I feel stupid not having come up with it myself.

All I wanted was for him to tell me he loved me (I know he did, his actions very clearly said it) but I wanted it verbalized and honestly if you can find special and unique ways to tell her and show her that, you'll brighten up her day so much and that can really help lift her spirit up!

This is one place I'm really floundering. It's really helpful to learn about the experiences of other people dealing with the same problems as her. I think sometimes she doesn't know what she wants anymore than I do.

Maybe if you are really interested in cooking for her, you might try to make some meals that can be frozen and surprise her at her place with a few re-heatable meals from you for days that she's alone and hurts too much to cook!

I'd never thought about re-heatable meals. That's a good one. This is really helpful. Thanks so much.

I'd also see if maybe she would be interested in a memory foam mattress pad, feather topper, or a heated mattress pad (not blanket but it's basically a heated sheet you put under your sheets and it is basically a huge heating pad for your whole body!) personally I have all 3 on my bed and it helps when I can't get comfortable... If she doesn't have anything like that, it might make her smile at bed time knowing and literally feeling how thoughtful it was you looked into and got one! If you get one, or 2 or all 3 haha, if it helps her, invest in the same for your bed so when she stays over it is consistent and again, she will be reminded of how thoughtful you were to make your bed more comfortable for her.

Luckily she already has a really nice memory foam mattress on her bed. As far as I know that's one thing she really is happy with. Maybe I'll talk to her about that though... Can't hurt to have another.

Also, another suggestion, research "the spoon theory" about fibro. This can really help you understand how exhausting day to day, hour to hour, even minute to minute, can be for someone with fibromyalgia.... See if this can help give you some insight into her pain and exhaustion. She might be interested in learning about it as well so she can better describe to you and others who need to know how many spoons she's got today! Lol

I'd never heard of the "Spoon Theory" thing. Kind of interesting though. I don't know if she's ever read about it herself. Definitely something to talk about later.

I feel like I've written you a novel here hahaha. Hope some of this helps!

Ps: if there are any clones of you out there send one my way because I would love to have someone so considerate and so eager and willing to understand and help!

Never forget to give yourself a little credit for being so wonderful! Even if she forgets to tell you sometimes, she will always appreciate your efforts!

Well I appreciate the effort you put into this "novel" haha. You mentioned a bunch of things that would be a PERFECT fit for her. I really appreciate the help. It's rather scary to not know how to help someone you care about. Anyways, thanks a lot! You've me tons to think about.
 
I agree about the repeated "you're strong" and "it'll be okay." I know that a lot of people do that when they're at a loss about what to say, but... well, being strong doesn't really make the pain feel any better, does it? :-( And I'm sure that hearing "it will be okay" in the middle of such horrible pain doesn't really mean much either.

Letting someone know that you're *there*... whether or not you can actually do anything to help... that's what's important.

You make a good point about how meaningless that generic talk is. It's been my weakest point by far. At least with kind gestures you have time to plan them. I've had a hard time coming up with the "right" thing to say at a moment's notice. She never gets mad or anything, but I can tell there's more I should be able to do.
 
I've read all the replys and your comments, WOW ,if you are not the perfect example of a caring loving, supportive partner, I don't know what is. I will tell you that the one thing my husband does that absolutely drives me over the edge, is when he constantly jumps in taking over what ever it is I'm doing. I know that he's only trying to be helpful, but i didn't ask for the help. That may sound a little petty, but I'm not helpless, yet. So my suggestion is to be clear with your girlfriend about when she would like help with something and when she wants to do it herself. The suggestions about doing special things for her are wonderful ideas. If she is ever foolish enough to let you go, I live near Chicago, lol
 
I will tell you that the one thing my husband does that absolutely drives me over the edge, is when he constantly jumps in taking over what ever it is I'm doing. I know that he's only trying to be helpful, but i didn't ask for the help. That may sound a little petty, but I'm not helpless, yet. So my suggestion is to be clear with your girlfriend about when she would like help with something and when she wants to do it herself.

So I'm coming to the conclusion that I just need to watch and learn what does and doesn't work. I'm glad to hear from someone who deals with not wanting to be helpless. I guess I'll have to just try to ebb and flow the help until I find the right spot. Thanks for the insight! The more I read, the more I can put a plan together in my head.
 
I saw an e-book that might be helpful, Living with fibromyalgia patients, 79 ways to make their life easier by Tom Buford. I found it on amazon.
 
Don't think not having sex means that she loves you any less. :)
I hate that my husband thinks if we don't have sex we don't love each other. And most days I'd rather hide away then have sex.
 
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