I've been on here a lot over the last week! I'm so thankful you all are here. I can't tell you how many times I've cut and pasted excerpts out of some the posts y'all have written and put them into a word doc to give to my husband to read!
He has a very short attn. span and doesn't like to read more than a few sentences at a time. So when having him read anything about MS, I have to make sure it's short. He apologizes for being sidetracked or just not being able to focus on an entire article all the time. So I explain the article and its contents to him. And he's good w/ that, for the moment.....because along w/ the ADD, he has memory issues. Pretty bad, actually. And it's pretty frustrating for he and I both.
That all being said, my venting is about him FORGETTING that I have MS! He knows. And is very supportive and empathetic to my symptoms. But then he constantly wants to hang out until late on the weekends after the baby is asleep (she's 3 but still our baby, lol. And it's our only real time together). Unfortunately I'm no good past 7pm at best. I'm up before 5am every morning to get to work by 6:45. I'm home by 4pm to play w/ our munchkin and make dinner, but he's not home until between 6 and 8pm depending on the job he's on and the season, weather etc...Or he'll want to do yard work together, or hang out in the evenings outside in the middle of summer.....and then he practically pouts when I say I can't or won't....sigh...We've known each other since we were around 8 or 9 yrs old. We've always kept in touch through the years and in between different relationships and living in different states. He's always been my true love and we were married 3-1/2 yrs ago (we are now 45 & 46). So I love him w/ all my heart. But I'm ready to knock him down sometimes!!!! How many times to I have to remind him that I have MS? He helps me w/ some of my shots! He KNOWS I have it....but he "forgets" that it comes w/ symptoms, that I remind him of on an almost DAILY basis.......UGGGGGHHHHH!!!! Okay, venting complete. thank you. Continue w/ your regularly scheduled program
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cassielynn71
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I hope you feel better after venting ☺. Just try to understand his symptoms just like you want him to understand yours. It sounds like you're in a very loving relationship. Keep the love, support and understanding.
You are absolutely right. And he does ask that I be more patient w/ him. I guess it just frustrates me as to the cause of his memory issues. Not that he can do anything about it now. I think the damage is permanent. But he won't accept the cause and is instead afraid it's early onset Alzheimer's or something like that. But between me and you...lol, everyone on here, he's an alcoholic (a serious one) and has battled addiction since we were young and he has horrible insomnia. I didn't realize how the drinking would affect our family until we were already married. And that's fine. I don't love him any less. I am still IN love w/ him. I think I need to go back to Alanon for more support w/ the lesson of "loving from a 'distance'". That one lesson alone has kept us close, and together really. He is an amazing, strong, sensitive, caring, loving man, and an excellent provider with phenomenal work ethic. He just can't and doesn't want to quit drinking. It is what it is. He has his own Monster to deal w/. And like I said, if he were to go to rehab and quit tomorrow, I'm not so sure his memory capabilities would come back at this point. His body hurts from head to toe every day and his stomach is more of a mess than mine AND he has chronic Hep B (for 20 years) and can't put on weight, but he refuses to go back to the doctor for either since they told him they can't or won't run anymore tests until he's sober for 6 weeks..... so yes, you are 100% right that I need to be more understanding of his issues. He's hurting, sick and "stuck".... My heart goes out to him. Thank you Royjr for reminding me that I'm not the only show on the road and for helping me put things back into perspective. He is equally, if not more, sick & or hurting than I am. I need to cut him some slack. I suddenly feel like a less than loving and understanding wife.....
Wow.....Talk about putting it all our there! I suddenly feel very naked by airing my 'dirty laundry' to "the world". I'm generally pretty private w/ my small circle of friends and family. I don't see my friends often (once or twice a month or less) and for what ever reason have 'developed' (?) a phone aversion??? I'll text or email all day, but I rarely answer my phone...unless it's my doctors or my children (I have 3 older children, 19, 21, & 22). So really I only have my Mom and husband to vent to. I try not to vent too much to my Mom since she has Fibro and her own myriad of health issues and I don't want her to get over protective w/ me toward him. Which she IS! Lol.
AAAAAND....I'm going to stop here because I'm sounding like a crazy lady! Lol. I can assure you, I may be long winded, but I am perfectly sane.
Well Chowell71, here is a virtual hug :). I'm not here to judge and believe me I've issues with my wife that would give you a headache if you were to read some of the things I'm dealing with (lol). I look at it this way; God gave us two ears and one mouth for a reason, to listen. Stay in touch. Royjr
Thank you Royjr. I was almost afraid to check on your response....as soon as I hit Submit, I was like "WHAT on Earth are you doing?!!!" Lol. Thanks again, and good luck w/ your wife! Lol....It's all for love, right
Well cassielynn71 or should l just call you " crazy lady " ? l feel if you're going to vent, do it here, we arnt here to judge anyone and it's a safe place to do it.
You have alot on your plate, Bless Your Heart. I have no answers for you, but we are here to listen anytime, and sometimes that's all you need. ~ hugs ~
Just remember that you have to take care of you too.
Thank you Jesmcd2 Lololol, YES please call me 'crazy lady'! Lolol, I love it, lol. I actually had to ask my Primary Care doctor is she thought I was a Hypochondriac or if I was just plain old CRAZY. She laughed at me said I was absolutely NOT a hypochondriac because I didn't fit the profile (thankfully so because I was convinced I was one!). And she continued by saying I was too rational to be crazy. So I felt better all around after that visit! Lol.
Sometimes I just fail to use my "edit button" and I am also way too longwinded, as my friends and family have always pointed out but forgive me for on a daily I even annoy myself some days when I seem to babble on and on w/out ever reaching my point!
Chowell71, it's Fancy1959 welcoming you back to this chat room. We have a lot of good people here that are kind and great listener so you've come to a great place to vent. In fact listening to someone venting is one of our specialties here. The great thing about this chat room is that with so many members someone or someones will bound to be going through something similar and you will get lots of different ideas about possible problem solving what issues you're currently having.
First and formost we all need to remember that not everyone is cut out to be a nurturer. If you have been a nurturer to your husband with his problems and he can't return the favor I'm sure it is not a good feeling. Do not however be overly concerned because my husband also has a very hard time understanding what MS has done to me. It sounds like they both expect too much from us. They remember our pre MS life and expect our bodies to be able to perform at that same level. Well it just doesn't happen that way anymore. No matter how hard we push it it doesn't work. Don't do that to yourself. Because when you push yourself hard you know as well as I do you can hurt yourself. Now I have another question. Is your neurologist a man or a woman? I don't mean to sound sexist but sometimes a man will listen to what another man has to say over that of what a woman might say. So perhaps you could take your husband to your next neurology appointment and ask your neurologist to set time aside to talk to your husband and help him to understand what MS is and what it does once it attacks.
Keep your chin up and remember we're only a post away. Vent all you like because by answering your vents, we in turn vent a bit ourselves! So it's a win-win situation and it's a great way to get to know others in this chat room. Take care and please keep in touch. Remember together we are stronger!
Thank you Fancy1959! My Neuro is a female, which might be why I like her so much, Lol. I feel she is more relatable to me. Whereas my husband, who went w/ me to see her for my first injection & training session. He barely spoke except to ask when would the Copaxone start to kick in so all my symptoms would go away. She explained to him (as I did several times before I even started the Copaxone) that it doesn't work that way. It just 'lessens' the number of episodes/exacerbations. It doesn't stop symptoms or make them go away or cure any permanent damage. I still think he just forgets I have it because I still go to work everyday, come home and cook dinner and play w/, bathe & take care of our 3 yr old the same as I always have. Of course my symptoms started way before she came into our lives so the only real difference is I don't hang out w/ him as much on the weekends when we used to spend all of our quality time together. I'm just too darn exhausted to stay awake to go out at night. And the heat sensitivity escalate with each summer.....Heck, it's Christmas and our tree is up, but the totes full of ornaments are still just sitting there because I just didn't have the energy this weekend to hang them. Thankfully it's a pre-lit so at least it has lights on! Lol. My goal this week is to get those ornaments up w/ our daughter a little at a time after work, before dinner Wish me luck!!!
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l feel if you're going to vent, do it here, we arnt here to judge anyone and it's a safe place to do it.
My neuro says don't need DMT since no changes in MRI in 2 years
Venting
Husband as Caregiver
