I just wanted to ask a question to everyone. How do your loved ones, especially spouses deal with your pain? Do they freak out when you have a flare up or think you are making it up? Or do they try to relate to you and help you rest and feel better?
The reason I am asking is because last weekend was the first time I showed my "pain" to my boyfriend. He got really freaked out and told me that I can't let whatever this is defeat me. This was becuase I didn't want to do something with him because I had a really bad few days last week with pain.
Thats a really good question, and in my experience, they do both.
Im going to tell you that my husband was terrified, and being the big strong Italian he is, he refused to admit it. I know he had fears like mine...will I be in a wheel chair in a few years? Will I be able to keep working? Will I be sick all the time? Will I have to stop traveling so much? Yada Yada..
Heres what I did to help him. I cant get him to take off work to go to doctors appts with me, so I found a newly diagnosed MS group locally. Newly diagnosed is very important, because you want to find other people who are new to this, and on the same page as you....no sense talking to people who have had MS for 20 years and never had the drugs and MS Therapy that we have now...its very unfortunate, but most of the people who suffered the most with this disease never had the opportunity to control it, medically.
So, then take him to these meetings, told him it was mandatory that he came (the first time) and he actually sat and listened. He also saw people who said they were dx for 2 years and doing fine- and he saw someone who was pregnant- he learned about the ones who told stories about getting drunk on one drink and all the other funny things we share....he started to relax. When we left the first meeting, he said "That wasnt too bad". I knew I had him then...he has gone to every single other meeting with me, as my support person, even though I always say "ill go alone if you dont want to go this month". He always goes. I think he finds hope in the fact that there are a bunch of guys and girls in my age bracket who are all laughing at dumb MS things, and also talking about progress in research and the hope we have. I think he likes knowing that those people all have jobs, kids, families, etc and area very normal. All I know is he handles things better then he did before we started going.
Now, as for the whole do they think you are making it up? There are going to be some people who say "stop exaggerating". Dump them. You dont need the negativity in your life. But, for the ones who try to act like nothing is wrong.....LOVE THEM with all you have....the key to surviving this is to NOT let it drag you down. You cant think about it 24-7. You have to be conscious of it, take care of yourself, get lots of rest, dont go on binges drinking, etc...and pace yourself sometimes, but you have to keep LIVING. Now, im going to tell you something else which will help with your significant other. DONT complain to him. When you feel lousy, tell him, "i am having a bad ( I say MSey) day, Im going to call it an early night". Dont get into details.. dont spend all your time complaining.....that way, when you have a really bad day, you have a right to be talking about it and asking for help. No one likes to think that EVERY day is a bad day..and believe me, they arent. However, when you have one- admit it. Dont dwell or try to scare him about it...just admit you are having a bad day. Youre not cooking. Youre not going to so and sos house because you feel like your body is trying to tell you something and youre staying home and getting rest. He will either respect it, or think you are nuts...but be fair, when you are having a good day- take advantage of it, do what he wants to do, go out to a movie, dinner, etc. Dont deprive him of a normal life because you have MS...this is a really true test for realtionships....the strongest survive. Much as I hate to admit it, the statistics on MS and divorce are high...sometimes I wonder if my husband and I will make it. Weve been married 3 years, Ive had MS for jsut under One year...he didnt "sign up for this" as he says....but if he truly loves ME he will stick around, right?? ITs terrifying to think he might get tired of it; but you know what? Anything can happen in this lifetime, and MS is not the worst thing in the world...its all about how you handle it.....
The best piece of advice I can give, is once you accept your disease, so will he. The less you complain, the less he will have to worry about. If he knows and loves you, he will know that you only complain when you are really feeling bad..he'll apprecaite that, and hopefully will support you. I know when I had my relapse, and had IV's in my arm for a week (steroids) my husband was right there to give me the infusion, and flush the line...he showed his true colors that time...I was so grateful. The second time, he was away working for a long weekend, I wound up being hosptialized..the idea of trying to do it alone was too much for me....when he heard I was in the hospital he came home a day early to take care of me. Thats love. He also knows how to inject me, and doesnt ever let me sit and take my time about it. If I say I dont want to do this...he'll take it out of my hand and do it without thinking! Sometimes, I let him do my butt area, just because doesnt every man wish they could pinch their wives butts once in awhile?? We make a joke out of it, and it keeps things light. (It also helps when we are squabbling...nothing like letting him stick a needle in me to make him feel better!)
Does any of this help you?? I hope so!
I'm gonna be honest and say my hubby is still in denial.
He thinks I should be a super women.Wrong!
I've tried to get him to go to appointments and MS support groups by my stubborn Italian is still in denial.
I have boughten him books on MS,printed him info off the net.
We have been married 18 years so I have realized that until he comes to grips with it,its his problem.
When I go to do my injections he hides.
The only communications he has had with my neuro was my last relapse and I couldn't move my right side.He took me to the ER and admitted me ,he dropped me off like a pound hound.
Someday he'll come to terms with it,but it has to be at his time.But I'm always honest with him and say I can't do it.He excepts that.
It's great that you were honest with him,he has to know how you feel.pushing yourself to pacify others can cause your symptoms to go hay wire.it took me a while to learn limitations.
Nuff, sorry to hear that you are goign thru this, but I think what you said is really important to the question. IF you are going to do this with the help of someone, then they cant be in denial and you HAVE to know your own body and limitations.
Hereinwi, your boyfriend needs to know that freaking out is worse on you than anything..and if he cant just be there to be supportive, then he needs to go away while you are taking care of yourself. Then, its your decision whether to keep him around when you feel good. UNlike NUFF, you dont have 18 years with this person...so, therefore make your decision on "forever' based on what you learn in the near future.
Nuff...its interesting to me that you deal with that, on top of everything else, so well. Do you feel like you lost respect for him because of how he "doesnt " deal with this?
He's such a mamma's boy,can't make a decision for himself,its like having a
We are actually legally seperated,he comes and goes ,valuim helps me tolerate him.Seriously he's a good person deep down,fantastic father,but has never been able to deal with things.He's 47 and his mother still has so much control over him,and he has never cut the apron strings.He was raised as a spoiled little rich kid.The dumb A** can't even make a decision for himself.
I ignore him most of the time or he likes to pick fights.He never wins.No I have not lost respect for him do to the fact he has alot of insecurities and he is the father of 3 of my kids and raised my oldest.
I've always told my kids respect is earned and he does financially takes care of his obligations.And I want my children to have respect for there father and if I showed disrespect for him then they may follow.
Thanks for being so honest...your answer, is much like my husband's EX WIFE would say about him....same with the 3 kids...he has 3, I legally adopted the oldest, so she is with us all the time, and the other 2 are here off an on...but his ex warned me that alot of what you said, is true about my husband....interestingly enough, I have not seen that side of him Maybe it will show one day, but I pray not!You have Valium. I have xanax! On the occasion where he yells and screams I just tune out! He does take very good responsiblity of the kids and his ex..who is more of a loser than your husband, trust me.
You are one He** of a woman, and I have more and more respect for you with every post...please take care of yourself.
Hi Nuff & Nikki,
I havent been on this board very long but I feel like we are all part of a "family" here. When I am having a bad day, or need straight forward honest information I always find it here.
I am very lucky, I have been married for 24 yrs to a great guy and have 2 awesome Boys who are my ROCKS But it hasnt always been like this. We have both been through a lot especially lately.
A year before I was diagnosed with MS he was diagnosed with Parkinsons Disease. He is only 54 now and is on Social Security. We have a running joke as to who is going to get what color "Jazzy" (not a joking matter but it helps) But looking back, it took him getting sick for him to show compassion and understanding towards me when I wasn't doing well. (it took 10 yrs for my Diagnosis so you know I had my ups and downs) We now try and keep each other focused and on the right track. I had to stop trying to do everything for everyone, he keeps me reigned in on this which is not an easy job.
When I am in pain, or too tired to move my boys are the ones who tell me to take a break. This sounded good when they said it until they realized that if Mom didnt do it they needed to LOL. We did have a family "meeting" when I was diagnosed just to keep them informed as to what was going on with me and how things were very unpredictable with MS. I thank god that they arent little ones and understand and are able to help take some of the day to day stuff off my shoulders. They are very protective of me I am very very lucky in that regard.
My extended family however is not as supportive. My father is in total denial that anything is wrong. His famous quote is "you look fine how can you be sick?" and the predictable "dont you think you need a second oppinion?" (already got one) He never has been great at handling serious issues anyways so I kind of expected his response.
All we can do is be good to ourselves, cut ourselves some slack, and know that our loved ones do care, even if they have major problems showing it.
Im sorry if this rambled on too long, its been a hot button for me for a while now.
Hope it helped
Always here for you
My hubby completely understands,,, he knew something was wrong with me for yrs, and when we both found out it was MS he has been there for me more than I am here for myself, if u get what I mean,,, sometimes in the night I am crying in my sleep, the pain is so bad, and he will wake me up and massage me get me a drink pain pills anything I need, and I feel bad cause it always seems to happen during the nights that he has to be to work at 5am after just getting home from work at 9pm and having to go back, I tell him I am sorry and he says don;t u be sorry! I married u for richer and poorer sickness and health and I will stay here as long as u need me and forget work I will get there when u are comfortable. so far he has never had to be late and thank God for that cause he is the Forman and let's everyone in. He gets online alot and looks up things about the MS and he reads the magazones I get for the MS and he lets me know when there is new stuff. Our lives have changed alot, we used to do alot of outdoor things, like concerts and mud bogs and just going out with friends and we do not do anyhthing like that anymore, because of the MS,, I am praying starting Tysabri helps change this MS in some ways we can start doing things like that again on occasion. Gary also doesn't want me to get depressed, which is what ur b/f is thinking about I am assuming,,, cause if u sit around and not do things,, it will take a toll on u,, I myself refuse to let this MS get me down,, I started working again a month ago and I am loving every minute of it, But when the kitchen gets hot I gotta put on the ice vest cause I will not let the heat and an MS flare keep me from working anymore, I am sick of sitting at home,, so I do 6 hours a day 5 or 6 days a week. I hope u can keep the MS from getting u down which is what ur b/f is wanting! Good Luck with it all!
I would like to apologize for not replying to my posting! I never got any emails until this weekend stating that anyone posted, hmm weird. When I get a chance to read through everything I will write a longer posting. Work is busy today and tomorrow is my final day of classes for the semester
Last edited by hereinwi; 05-14-2007 at 05:55 AM.
Reason: Typo :)
Okay so you have all replied so whole-heartedly that it just amazes me, well not really because all of us on this board are awesome I have been with my boyfriend now for almost 4 years and he is basically my daughters father. I can understand him trying to get me over how I feel because he doesn't want how I feel to defeat me. I think that most of the concern is from me. I don't let it show often but my biggest fear is that I will be in a wheelchair. Or wondering if I will ever have the energy to have more kids, that really scares me. But to be honest, my mood swings are terrible. I can't stand myself sometimes. Anyone else have mood swings like that? The idea of a support group is wonderful, I haven't been officially dx as of yet and if or when I am I will find one locally and go as often as possible. I do try to show my pain as little as possible. Everytime I talk about it to anyone I always think about YOU GUYS on this board and how you are the only ones who can possibly understand how I feel. It gives me comfort to know that I can turn to everyone on this board. Nat it is amazing that your husband seems to understand you and just care so much about helping you. I think that every spouse has a different way to deal with this, but in the end I figure that it is how I deal with it not him. Nik, thanks as always for the wonderful insite. KT welcome to the "family" there is amazing people on this board! And to Nuffs good luck with the hubby, sounds like he cares about you in his own ways. Guys are so weird and complicated. I will never ever figure them out.
Just remember we ARE here for you and yes, what you are feeling is very normal. Its called the unknown zone...youre still processing all of this and believe finding out you have MS is the scariest few weeks of your life. If you do get a dx, you'll probably get very depressed for a short while. Also normal. We all went thru it. For some, medication is needed and available, for lots of us, we just start to accept and deal and the depression turns more into the next stage- disbelief! Why me? Why me? Thats sort of when the "poor me" stage kicks in....followed by the angry stage. "Im going to beat this thing!" thats when the healing begins...emotional healing I mean.
I truly believe that it is easier to have a dx. Once you do, and you start medication, you start to take control of your disease and you feel empowered that you CAN and ARE doing something to keep it from getting worse. Its at that point that you'll really start to earn the respect of the people around you. They see that you are doing something for you and they stop making it harder than it has to be. No one likes other people feeling sorry for them! (and of course we hate to worry our loved ones).
On the other hand...your b/f is doing what he needs to do for him right now. Remember what I said, dont complain unnecessarily...only when you really need him. There will be days when you do- he'll appreciate 'being there for you" if he realizes that you arent "needy' all the time. And, you wont be! You can look into support groups even without a dx..no one there will care if you havent gotten a dx, and you might learn something new...thats up to you. But you dont need to be a "card carrying MSer' to reap the benefits of a support group....duh- havent we already proved that to you??!!