Frustrated with my "supportive/understanding" boyfriend

[MaggyBunny]

First off I should state that I got diagnosed a few months ago with fibromyalgia, since then I've bought so many books… one book in particular "fibromyalgia for friends and loved ones" my parents found it very helpful and answered a lot of questions. My boyfriend (of many years that I live with) wont read it or any of the books I've brought home. He claims that he's done research and knows things, which I'm sure the mighty and all knowing google has helped him out…
On the days that I hurt the worst and can't function, he at least understands that I need to lie down and rest. He also hates that I'm in pain and says he's frustrated he can't help me feel better. I tell him I hate that I can't take care of the household things or that it bothers me that I had to leave work early. His usual response is "oh well, it will always be there tomorrow, it can always wait". Sometimes he makes me dinner, but the dishes never get done, the messes are always there. Is it crazy that i would like help around the house since I just physically can't keep up with the house and work any more?
Yesterday I had to slam on my breaks to miss a car that ran a stop sign, and my back has been out of wack ever since and in a lot of pain. My boyfriend said "well at least this is the kind of thing I can understand, this pain is reasonable since you had almost had an auto collision" REALLY????? Telling someone with a chronic pain condition that I feel horrible enough about for having, that at least almost getting in an accident at least makes my pain rational for you now!
Is anyone having the same issues? Does anyone know how to get through to their partner about their invisible illness? I don't want to loose our life together, especially because he's adopted my daughter, but at the same time I feel so resentful towards him, and he's always saying how frustrated he is because he can't "fix" me and I know since fibro has reared it head there is so much that has changed and that I can't do. I walk with a cane now and he hates that so much, but my ankle likes to give out an my legs hurt so much I just can't go without it. I also have a walker with a seat for all day adventures but he hates that so much I've never actually gotten to use it, even though it would love to. He likes to conveniently forget when I have to take a "controlled sit" (I'm a lady, we don't fall). Sorry for rambling on again.

Read more at http://www.fibromyalgiaconnect.com/users/1528817-maggybunny#CGKByJ2DBlxGa34D.99

 

[Hope4all]

Hi! So sorry you are going through this! I totally understand the legs hurting (among other things) and needing to sit down, especially if we are out somewhere. I won't even go some places like the fair because it is too much uncontrolled time on my feet. I also understand watching your abilities decline like with housework. It is hard when you are in a lot of pain and people don't understand because they don't see a broken leg or black eye. The pain can really drain you, though. My husband is really good about cooking or dishes, (not as good at listening to feelings) but he is our only income and comes home exhausted. I have coped by teaching my children (we have four) to do almost anything I do. I made it organized and routine so they know what is expected and reward them. I was worried about asking too much of them, but they have lots of energy and it is good for them to learn. How old is your daughter? Do you have friends you can get help from? Extended family? There are so many people with fibromyalgia or other chronic pain and it is finally recognized by the medical community. You have to set your own limits. Be direct and ask for what you need. Maybe a smaller thing to read like an article. It is also possible he is going through his own feelings about it. It can be hard for our loved ones, too. Maybe prioritize so you know what is most important to the family that you do. Or if you can't do that, I sometimes do things I can do sitting down. Other times it really isn't productive to keep pushing yourself. You have to pay attention to your body's responses, maybe even log it. I really hope you and your family find a balance. Best wishes.

 

[MaggyBunny]

I suppose my biggest issue with it is that he and I both work full time (I only come home early from work when the pain gets so bad that I end up in tears). I'm still the one that does all the housework and spends the most time dealing with our 10 year old, although he does help her with her homework most days. He goes into work 2 hours before I do so he can pick her up from school, and I go in later so I can take her in to school. When I get home from work I almost always have to cook dinner right away and then follow it up with cleaning or laundry or something else, meanwhile he's on the computer with his video games all day. I get that he needs his time and he needs to decompress from work, but the only time I lay-down and don't do anything are the times that I hurt so bad I'm in tears. My income right now only goes to pay for my car and medical bills so i suppose since he pays for everything else he feels he shouldn't have to do the house work? I don't know, but I just physically can't anymore. I know that he says he's trying to understand it, but he's made comments before that he just can't, he doesn't' understand it, he doesn't get it. I'm just really not sure what to do. I keep waking up from nightmares, last night I dreamed that he was cheating on me, the night before I dreamed that he was holding open auditions in the house to replace me. My family came over last night to help me get ready for my daughter's birthday party. My brother played a video game with my daughter to keep her occupied so we could get things done.... boyfriend just sat on the couch chiming in his opinion here and there

 

[diamond]

I am so sorry you are going through this and with a young family and job as well!

Honestly i am full of admiration for your determination as only we know how brutal this illness is on our bodies and our minds.

If its ok to give a little advice i am in my mid 50's and have had fibro for about a decade but started with fatigue so bad in my 30's i used to drive home from work in my lunch break to lay on the bed for a 30 minute rest and then drive back.

It sounds as if your body is telling you you are pushing it too hard...and in the long run if this continuse along with high stress it is possible things health wise could get worse...so you do need maybe to prioritize your health as in the long run it is the most important thing for yourself and your family.

Hope4all is right maybe need a heart to heart with boyfriend and see if you can find concrete solutions to lighten the load.

First there is the route of paying a cleaner (maid) to do a thorough house clean maybe once a week or fortnight...you may have to cut down on something to afford this but it could help reduce the physical slog at home.

Alternatively could you reduce your hours at work...make alternative arrangements for travel so you dont need two cars or anything you can think of so you have more me /relax time....in the long run you will manage the pain better and quality of life for you all could be better.

Of course i dont know your situation but somettimes we think we need certain material things and don't think outside the box for solutions..that may also mean asking family to help with your daughter so you and your boyfriend can relax for a few hours

Your boyfriend needs to step up..sorry but he does...he has to read more about this illness and i am afraid its up to you to put this information under his nose...not a whole book but there is so much info on the internet.

Google letters to normals or the spoon theory for fibromyalgia. There is a post i did months ago with 3 long letters for family and friends explaining what its like for us...if you want i will try and find the link ...just say .

Or direct him towards this website to any threads that explain things you want to.

He really needs to help more in the house ( be firm) and maybe in return he could have his own me time now and again going off to do something relaxing.
I wish you look as our partners so often dont give us the support we need that can make all the difference and resentment does kick in for the thoughtless things they say.

I understand how vulnerable you feel really i do....if your boyfrind is a proper partner he will stick by you and help find a way forward as you should not be ending up crying in pain often.

The nightmares are the vulnerability coming out..im so sorry i understand this too as i have the same.

Your family sound lovely and supportive ..could they help with educate your boyfrind.

Please dont be sorry for rambling..that is what we are here for. you sound a lovely person and mum..take good care of yourself!

Take CAre

 

[DK_engineer]

Hi MaggyBunny,
Hope4all and willow have good advice! My kids are wonderful about helping around the house. And willow is absolutely right that you need to listen to your body and slow down (pacing).

I just wanted to add that sometimes it can be really challenging to handle a difficult conversation with skill. When we get stressed out, fight-or-flight takes over and shuts down the thinking part of our brains. Sometimes we say things we don't mean, or don't say things we really should.

There's a book I read that has helped me learn the skills to handle these difficult situations - "Crucial Conversations" by Kerry Patterson. I've used what I learned from this book to communicate firmly but non-threateningly in lots of situations at home and at work.

It took a while for the people around me to grasp fibromyalgia (I can't blame them; it took me at least a year, and I'm the one experiencing it). I had some tough conversations with my husband after my diagnosis. I remember one conversation when I told him that getting angry and snippy over minor inconveniences was not going to work for me. He protested that he shouldn't have to walk on eggshells around me because it wasn't fair to him. I agreed it wasn't fair for either of us, but reminded him we have to live with reality, and the reality was that he needed to tone it down or I would hurt (more). And if I hurt too much, I wouldn't be able work and be there for him and the kids. That seemed to get through to him.

Sometimes it doesn't work to throw a lot of information at a person. It's not that they don't care, they are just not able to absorb what you are telling them. You have to dribble the information out a little at a time. Sometimes just one little detail will get the point across. For example, one of my friends finally understood just how crazy the pain can be when I told her the roots of all my teeth were burning. At the time, that was the tip of the pain iceberg for me, but that one little detail crystalized the idea for her. Adding more would have made it confusing again.

A few phrases that are handy to have ready:

"When you say that it makes me feel like..." is a good one to use after he makes a comment that undermines you (like when you hurt your back at the stop sign). You can use it to help him understand that what he is saying is detrimental, and it gives him a chance to clarify what he means.

"Nevertheless..." This one is great when someone is trying to weasel out of something. So if he says the work will be there for you tomorrow, you say "Nevertheless, I need you to do it tonight." You have to be focused on what you want when you use this, because often the other person will throw up a lot of dirt to try to confuse the matter (I mostly use this one at work).

One thing your boyfriend needs to understand is that a chronic illness cannot be fixed, it can only be managed. It's like the weather. You can't fix the rain (or a hurricane). You can only manage the effects. His job is not to fix you. His job is to help you manage your illness by taking the pressure off you (i.e. do housework).

Sorry I have gone on so long, I hope at least some of this is helpful

 

[diamond]

DK you also give such good advice and seem such a strong lady able to get your point across without the bit i get which is guilt for needing the help.

I wish i was more matter of fact and less emotional in feeling a failure from other peoples lack of understanding and the disapproval they can show.

The bit about hurting more if our nearest and dearest snipe or get angry is so true and my partner has also felt he was also walking on egg shells at times and blamed me for that on top of being unwell!

I've also had this kind of thing where my dad wants to overload me with my parents needs and worries when i already am ridden with guilt i cant be the daughter i want to be in their old age...when my family do this my pain spikes so bad i cant sleep however much medication i take but no amount of explaining they still don't get it....so i have kind of had to with draw a bit which breaks my heart and makes it look like i dont care and am the bad guy...when infact i care so very much about them but cant give them what they need.

Anyway sorry this ramble has gone off at a tangent but hopefully MaggieBunny will see we all have these issues and all understand her situation.

That book sounds a really big help DK...you are pretty invaluable to this site!

 

[MaggyBunny]

Thanks everyone for your comments and recommendations. I've been dealing with a lot of pain and fatigue and haven't had much chance to get on to respond. I do like books, so I think I'll have to pick up a copy! Thanks for the recommendation DK. I've tried having a few talks with my boyfriend and daughter, this weekend I had to ask him to finish vacuuming for me which was met with frustration and then it wasn't finished because he didn't want to move things and wouldn't move the coffee table back because its so heavy for one person (yet I was the one who moved it out of the way in the first place to clean)... My daughter is also super lazy and I can't get her to do things either, unless a lot of arguing and frustration is involved so its just easier not to bother at that rate. Hope everyone is well and that you again for your responses and help.

 

[Forgetmenot]

Hay Maggie,men who don't have fibro rarely understand our pain.my ex refused to talk about it.if I was in pain he got mad at me.
After six years I just had to walk away.
But that does not mean u do.your dreams are your minds way of dealing with the fear your boyfriend doesn't want you.mixed with your own feelings of not being good enough anymore.
Take some time to come to terms with your life now.your boyfriend might not be your hero right now,but he is still with u ,he clearly loves you.just try to remember most men are hopeless at feelings.ps I said some not all lol.i just never meaet one .

 

[harpert]

Hi MaggyBunny, I'm sorry to hear about your struggles. I am fortunate that my husband is a disabled/retired veteran so he is home all the time. He is very understanding and does almost everything around the house. I have gone down to working 2 hours a day. I am a lunch recess monitor at an elementary school. I consider that my "exercise" that my doctor keeps telling me to do. It really helped that my husband has gone to a lot of my appointments. I will not drive to far so he drives. When they are sitting there listening to the doctor and can ask questions it really can open their eyes. Best of luck to you, gentle hugs.

 

[DK_engineer]

Thank you for the kind words willow and MaggyBunny - sorry for the slow reply, I've had a flare over the weekend and am just recovering

Just so you know, I feel guilty too. Sometimes it just isn't easy to find my way through all the conflicting needs and demands. Shortly after I was diagnosed, one of my husband's friends got really mad at me because I refused to host a large party. My needs were in conflict with what that individual wanted.

We were not able to resolve that conflict; we no longer associate with that person. I feel better that I don't have to spend time around him anymore. However the dissolution of that friendship was very stressful, and losing that friendship put strain on other friendships.

That example is an extreme case, though. Sometimes people just need a little time to adapt and develop new habits.