Having difficult pain and spasm weekend. I do find my self somewhat quite and can be sullen when I am in pain. My husband of 34 years, does not like to hear me say that I am in pain. He does not know how to handle, and so I just keep mute. Yet, when I am quite he yells at me and asks what's wrong with me. All I would like him to do is hold me, not to tight or even rub my left hip. Yet, he won't.
How do others handle? When people ask you how are you doing, I find that they really do it want to know the truth. So, I just smile and say nothing, all the while hurting inside and out.
Gingerc, I use to do that when I first got so sick I couldn't go to work. But it made me feel bad emotionally because I felt like I was lying to make them feel better. I started telling them the truth and I was surprised at how some would ask if they could do anything to help, while others would respond with a vague "on, I'm sorry," and go on as if they didn't want to hear of weren't sure what to say. My husband took the longest to accept I really have issues I can't help and likely will never go away. But it took my making him go to doctor appts with me. We'll celebrate our 34th anniversary this year too. By the doctors explaining things to him he's now my biggest advocate. When he asked how i feel i let him know. And he ask if I need him to rub ointment into my back or shoulders almost every night. 🙏🌼
I always try to do the same thing, but I found out normal people won't accept it if you're sobbing in the hallway unable to stand, let alone walk. I usually just find a closet or bathroom and hide when I know someone is about to ask me how I am. Not the best method, but oh, well!
Weird, this morning for the first time, my husband just ask me, how did I sleep, he ask if my back was still in intense pain. He actually said intense. I ask him why? He said it is hard for him to understand. He thinks I should just be tough. He is frustrated for he said he can't help me so he doesn't always say anything, wow. Maybe me writing this helped somehow, I know silly.
Gingerc, that's a good start. Have you thought about reading him some of the posts, to show him there are many who suffer & how hard it is for us all? I let my hubby read a few when one night he asked what I was doing on my tablet. I told him about our community, all chronic pain sufferers who have turned to each other for support because normal healthy people can't truly understand. He was shocked to see how many struggle just to get through one day, and especially upset to see the youths posts.
Another thing you can do is Google search 1) the spoon theory & 2) love letters to the normals, (I think that's the names... If not someone please correct). Read them to him or let him read it himself. I found out about both on here from others, and they're great examples of chronically sick people's lives.
Ferretbandit, it's probably not the best way by hiding, but it's certainly understandable. Next time try to not hide but instead have a short description to give about how you are doing, wait for their response, then make your exit. Some of your hiding could be our anxiety from fear of ridicule or rejection. Sadly we all have to deal with that. But remember all of us supporting you & envision us standing right there with you. I'd almost bet your feel please anxious. And you can always suggest they Google and read the articles mentioned above.
(((Hugs))) & prayers for you both, that today will be a good day for you! 🙏🌼
I have learn to say I am in pain; however only as an explanation when my husband or someone asks what's wrong with you. People that do not have pain don't understand. My husband has learned to give me a smile and ask how he can help. My friends and associates almost ask me too much how I am feeling. They try to recognize when I limp less or seem to move quicker.
Sometimes I tell them the truth other times I answer about the same or I am fine. Dealing in silence is difficult. I do not like to whine.
I have actually learned to hold it in and not say anything to others except to close family(mom,dad,sister, etc). "Normal" people really don't seem to understand most of the time. I get that, but it's hard as hell to suffer in silence. Most of the time I learn to just smile and say, I'm find when I'm really not.
Ugh. I hate when people ask how I am. I have never NOT been in pain in years and years. A day on the 3/4 scale is heaven to me. I play it waay down or blame my diabetes. They can wrap their minds around diabetes but not Fibromyalgia. The truth? I'm in so much pain I'm exhausted from pain. NOT diabetes. My diabetes is under control and I'm doing great there. My boyfriend does not like my pain. He tries by buying me massage things...a TENS unit, a great chair, a foot massager etc...sometimes I just want him to hold me and lay in bed and watch movies with me (which he does) but I see his disappointment that we are not geocache or hiking. I'm terrified he will stop loving me.
Sweetiepie, I can relate to wanting but not being able to do things anymore. I've been married 34 years. Just this week while at Mayo, I tried to walk the beach with my hubby as we've done so many times in the past. I wasn't able to, and I could see disappointment on his face and hear it in his voice. I told him over and over to go enjoy a wall by himself but he refused to leave me. It actually angered me that he wouldn't go. I told him I don't need him using me as an excuse to get sympathy for himself when he returns to work and says he couldn't leave me because I was doing so badly. I would have been fine on the balcony watching him and everyone else. I want him to enjoy life and do things we used to, even though I can't. But I can't make him. I do know he suffers seeing me suffer, and I know he loves me.
I don't think your boyfriend will stop loving you because you can't do things, not it he truly loves you. Have you had a deep heart to heart talk of the possible what if scenario's? My hubby and I talked about everything before we married; children, marriage & commitment, loyalty to the vows, sickness, beliefs, our dreams and expectations, etc. Talk with him if you haven't already, maybe not as in depth as we did, but whatever makes you comfortable. It will likely help quell your fears. 🙏🌼
When it comes right down to it, the whole thing is a giant pain in the ass!!! Unless your arm Is hanging off your body, you have a cast and are on crutches, or you're bleeding or something that triggers people to think about pain. Otherwise, what happens is they look at you, can't find a brace or boo-boo or anything and automatically think there couldn't possibly be anything wrong with a person. It's sad and it's rediculous and for me, I'm sick and tired of it like the rest of you.
I too worry a lot about losing my partner. He's very supportive, but I can't help but think he will get fed up of me constantly being in pain. And how am I going to manage to carry his children!? Just adds to the depression part of this illness!!
Thankfully there is no pressure for kids. We are both 47 and our kids are in college. Both of us had disastrous first marriages. But he grew up with a mom that was a bed ridden hypochondriac and this freaks him out
I'm only 28 and he's just turned 26. I have two children from a previous relationship who he's absolutely in love with (as are they with him) but we've spoken about having our own since pretty early on in our relationship. We both came from big families, so 4 would be nice... If I can! :( It's a shame that his mum was like that, you with a genuine illness is probably confusing for him after the way he grew up.
This is just a question for you younger ladies wanting children, something to think about and deeply discuss with your partner... Is it the thought of additional pain that's keeping you from trying, or being able to physically hold out as a mother, or what? What is holding you back from something you dream & talk about?
I would think your partner would pitch in to equally care for the child(ren), knowing your issues ahead of time. And logically the longer you wait the "older & achier" you will feel. I know many women who had lupus, RA of other illnesses, and during their pregnancies they felt their absolute best. They say hormone levels have a lot to do with it.
I was 23 & 27 when I was pregnant and I only had one arthritic knee, so pain wasn't a problem, until I gained weight (30+ #1, 55 #2). I walked very sway backed with both, and a lot of my spine issues today are in the same area. My worst part of being pregnant was the severe morning sickness for the first three months, having to be hospitalized both times.
Talk with an obgyn and ask questions of what you might face as a result of your various conditions. Ask if there are things you can or need to do. And if necessary ask to be put under a high-risk obgyn, if you do decide to move forward. I'll be praying for you and wishing you the best! 🙏🌼
I tend to minimize my pain. It's actually more stressful knowing my wife gets frustrated wanting to take my pain away but cant. I usually explain that I appreciate her wanting to, but it's impossible. After all this time she usually knows the quieter I am, the more pain I'm in, so she tries to be a little more affectionate or massage me lightly to help. I think just being honest is the best while not always making it the only thing about you. If I happen to be having a real bad day, I announce it and let her know I'm ok, but more aches than usual. She knows enough now to just wait for my responses to things, communication is your best asset.
Faerygrl, same here. If I'm having a really, really bad day, I announce it that it's not a good day and that I'm in more pain than I can take. My family knows just to let me be. Not that I'm grouchy or mean, just weary and weepy. It sucks. It's nice your wife wants to take your pain... It's a lovely gesture but like you, I wouldn't relinquish it to someone else if I could. I wouldn't want to know that anyone felt like this, especially with my help.
Well I had a hard time getting ppl to quit asking how I am doing then one day my wife asked me how come I am typing on my I pad I let her read my pain charts and read some posts and now she's disabled also now so we have each other to vent on and I take on as much of Her care as I can I go to all her Drs appt and I've told a few Drs to look up this or that or telł him were to get off at and she is at mine and acts like a real mean persons if the dr act like a ask And it's been like this for me the year 74 and 2004 for wife God bless you all and your in my prayers
Most everyone knows how I feel by the look on my face. The only time I force smiles are at work, I work with the public. Occasionally I get asked "how are you" and sad to say I say back "believe me, you really don't wanna know." Most of them time I get an " I understand" nod. I stopped saying I'm ok. BUT...I always say what I'm grateful for that day. I try to keep my mind out of "victim" mode (which took a long time) and say what is good about life
Well we have one another. Question out there. Has anyone else with dogs noticed that they seem to notice that it is a bad pain day for you before your partner, spouse, kids, etc? My pups, especially my bull terrier mix, seems to know when I hurt. He does not jump on me and try's to place his heat next to my inflamed areas. He looks at me as to say, "I know mommy". He keeps the husky from jumping on me and walks slowly with me.
Yes our dogs know and seem to help some times by getting. Close to the pain area and there body heat helps plus they seem to be really loveableAnd keeps me havering to get up and take care of them too love them very much there my fur family
Gingerc, my previous dog was so in tune with my body's aches and pains, but he died last year. We now have a new dog that's less than 2. He senses my pain and late quietly beside me but isn't as affectionate as my other was. But both dogs sense my mother in laws blindness and never get near her when she's walking! 🙏🌼
People ask "how are you" as a greeting. Most don't really want to hear the truth. A doctor at work asked me that one day and I said "I'm alive." His reply? "Well you're aiming low." I,told him that's all I had at the moment.
My husband tries to understand and is very helpful - too helpful sometimes. I just tell him let me be and I'll let him know if I need anything. My boss and coworkers get it (Probably because we're in healthcare) but I often down play the severity of my pain. They only thing that gives me away is when I'm limping or one of my eyes turns blood red (i swear I look like a monster in a horror film) then they ask if I'm in pain.
I hate being the focus of attention for any reason but being known as the "sick" one is the worst.
I have two cats. One (female) follows me everywhere and always wants to snuggle the other (male) seems to just tolerate me except when I'm feeling really bad. Then they switch roles and the male becomes the big snuggle bug and seems to be trying to comfort me. The female just watches me staying close but avoiding too much contact. Weird.