Sex has been on my mind for a while now. So I figured I’ve blogged about urine and bowel issues, why not follow up with sex????? Natural transition, right? No not at all. Don’t worry; I’m not actually going to talk about the act of sex. I’m going to focus on how MS has affected my capacity for sexual feelings or my sexiness to be clear.
At first, I was just so spastic. My legs wouldn’t cooperate. Now that I have muscle relaxants, I’m a tad bit more limber but I don’t feel desirable. After all, my husband helps me with things one normally wouldn’t want any man to be present for, much less help out. I know I’m blessed to have him around but honestly how much of this can we take? I always harp on the activities Multiple Sclerosis has stolen from me but I forgot to mention my sex life. That part of me is somewhere between my walker, wheelchair, scooter and shower bench!
I just don’t have the energy to get “cute”. You know to go the extra mile from presentable to attractive. I think people don’t really look at me that way in a wheelchair. It stinks not being at eye level. I try to shake things up and actually dress like a 37-year woman. We also try to live that way too. Well, as much as we can. I know there are things my husband loves to do together that I just can’t do anymore.
Most mornings all I can do is simply get dressed. Makeup has been a casualty of this war and high heels are impossible for me to wear. I do pride myself on weekly visits to the beauty salon. I get my hair styled and a pedicure with hubby waiting patiently by my side. It’s funny, because I want to at least try to be seductive. But sometimes even with the hair and nails complete, I don’t feel like the diva I think I used to be. I do my best not to take him for granted. I wear dresses and cute sandals as often as I can but my shape is not where it was before this despicable disease. I remember him telling me my legs were his favorite body part of mine. I wonder what it is now? It’s surely not these wobbly stumps I have today.
But despite all of my MS faults, my husband still tells me how nice I look. Now, I just need to convince myself.
That’s the hard part.
Well I guess I am one in a million here. I was diagnosed in 2006 and even prior to that sex wasnt a something that was really important to me. In April 2012, after several other therapies I started Gilenya and look out old man here I come…..lol. My husband has new name for me. Anyways, lets just say it has put some spice in our love life. The desire to have sex is almost more than my husband can handle. He has had to put me on a schedule of not during his work week, which is 4 on 4 off. I was constantly trying to make out with him every night. I would wake up during the night and not be able to go back to sleep until after we had sex. He still enjoys it, just I was exhausting him. This has been going on for months now. And so far I have not found one other person who has had this side effect. But I guess I will enjoy it while I can. Best of luck to all of you guys.
Thank you for sharing this. Good to know I’m not the only one out there dealing with this. The challenge is different for us…we BOTH have MS. He was diagnosed 15 years ago and I was diagnosed 2 years ago…the chance of that? Rare..but we seemed to have accomplished it. I morn the loss of our “sexual” life often..even though we both get “in the mood”..it usually ends up in disapointment or me crying so why try? It’s like we are now partners without that. It sucks..
Thanks for posting, here’s a little from our experience.
My wife was diagnosed five years ago at age 34, and intimacy did suffer. However things have improved greatly in the last two years because she stopped taking Rebif. When she started Rebif, the listed side effects were few and minor. In the years since, the drug has been studied more rigorously for the UK government, and found to have increased and more severe side effects, and little or no benefit to long term disability rates.
She stopped taking it due to an allergic reaction, but the difference in her cognitive and physical state was substantial. More importantly a major side effect was depression which squashed her desire and ability to feel desirable. She sleeps 7-8 hours a day instead of 10, and is brighter and more passionate by miles versus her Rebif self. After reading of Merk pleading guilty to spiking blood samples to forge the efficacy of their vaccines, I can’t help but wonder how many other people with MS are spending more energy battling their medicine more than the disease
Hi Jeff,
I have been taking Rebif since 2008, tried to change three times to Aubagio copaxone and Tecfadera, Aubagio did nothing and the copaxone was painful and as for Tecfadera that stuff is poison. My question is what is she taking now?
Can I suggest Ocrevus or Tysibre? I took all the injectables and Gilenya at one time or another and side effects were awful. I’ve no idea if the infusions work or not:), I just know there are no side effects in me. As always, your results may vary. Wishing us all love and luck~
http://www.netplaces.com/kama-sutra/introduction/the-key-to-great-touch.htm is a good place to start reading a lot of techniques that will give you ideas, keep an open mind. Intimacy doesnt always have to be phyisical there is emotional and mental.. use them all
Laurie, Thanks!
Diagnosed, 10 years. Spacticity, fatigue, ‘fuzzy’ brain and walking like I pissed up affected my life for past 2.5 years.
I am mum to a 14 year old and 9know year old twins. Intimate times, few and far between. I am lucky enough to still work mornings. By the time I’ve finished ork got home sorted children, well my mind is willing but body just not!
Feeling ‘sexy’ is out the question. Just no energy. Even weekends when I dont gave work, usua
Deedee, I know what you mean… except for the kids part of course. I don’t have any and probably never will.
Ladies this is from a male perspective, I’ve been married to a beautiful woman 25 years. I was diagnose with MS April of 2004. My condition have continue to get worst and I’ve tried several treatment therapy from chemo, rebif, tysbari, steroids, and now back to chemo within that time frame. With men its not neccessarily about looking sexy but the confidence factor of being a man. I was man that never shied alway from any challenge but felt that I would deal with each circumstance as they arrive. I’ve lost that confidence and the unsureness of my wife staying by my side. She has never waived on our marriage but I keep feeeling I’m letting her down because of what I can no longer do. She says that my condition haven’t stop her from doing the things she wants to do and will continue to be by my side. Sex is no longer romantic, its now planned. ( Thats if I can mustered up some energy). I’ve finally decided that this disease wasn’t something that happen to be but something that happen for me. The things I can’t no longer do I have to look at the things I can do that was never high priority before this illness. Everyones life has change and I’m willing prove that somethings that you never thought about or opportunities that have risen in your path are now here. I was a worker 24 -7 but the friends I had was those I worked with, but now I have friends that are people I met from one situation to another and it wasn’t work related. I have more patience and more understanding about life. I was able to go back and get my Masters and utilized by brains instead of my bronzes. I missed the sex and the intimacy but there are so many more things in life thats in our path to enjoy. We just have to restructure our the perspective. God has given us enough talent to go on with life and it may not be how we have planned it but God got a bigger plan for us. Thats all I got, enjoy your life hes not finished with us yet.
Chuck, thanks for that much needed testosterone jolt!
Thanks for touching on the “taboo” subject. Although we “issues” there is no reason to avoid trying. It is a part of MS just as everything we deal with daily. Your beauty or your desire to your partner is not cosmetic, although it does help at times, let be real here, but beauty is what is in your heart, your words, your touch.,so sex takes a little more time.. foreplay is a must it takes awhile for them signals to fire and reach your brain. Experiment with toys, lubicants, movies, reading materials. I find morning is a better time of day (atleast for me). Visualize in your mind the “act”, your mind set is either a great help or deterient. NO you dont always feel like it, but you can nudge it along. Always be open and honest with your partner, tell them what you are scared of, or scared that will happen. Train your brain to a different path, we dont use all of our brain, it is just sitting there waiting for us to tap into it. MS is life altering not a death sentence, find the ways to alter your life and you will be much happier in all things, you have to listen to your body get intune with it and you will be suprise at the results you reap! Dont give up!
Laurie, Thanks so much for your comment. I needed that one
I feel the same way you do. I am not in a wheel chair at this point, but I do walk with a cane. I wear diapers, not makeup. My husband is always telling me the same things, but he just doesn’t understand. Thank you for publishing this, at least I know I am not the only one.
Crystal, You are so welcome. Sometimes I wonder if its a mind thing we’ve taken upon ourselves.
I can totally identify with this. My husband doesn’t have any interest as he can’t get past the “intimate care” that he has had to assist me with and even after losing all the steroid and hospitalisation weight I gained I don’t feel attractive. I see my beautician 6 weekly but I only manage to get my hair cut about once a year as it’s hard to fit appointments around hospital, doctors, physio etc. I mourn the loss of intimacy as I still love my husband but never manage to both be well rested enough for “those moments”.
Anna, I completely understand.
Anna,
Have you looked into someone else giving you “intimate care”, and on that same note does your husband have anyone to talk to about the care he gives, we sometimes forget the toll our MS has on everyone else. Contact the National MS Society, they have grants for several things to help . They can even tell you if there is a local chapter that has meetings for caregivers, as well as meetings for you. Touch is a great way to get those intimate feelings back, research it, read all you can on the subject, do everything you can .. if you need help finding a local chapter or the National MS Society or information on touch etc.. I will do everything I can to help you .. I have had ms for 10 years give or take..
God Bless .. Laurie [email protected]
http://www.netplaces.com/kama-sutra/introduction/the-key-to-great-touch.htm, there are a lot of helpful tips, you may not be able to do everything they talk about but it will give you different ideas
Laurie, I can’t wait to give it a look.
I understand Nicole! I may not experience this under noticed feel in the same way but I do understand the difficulties with intimacy! Sometimes it is so hard to ‘want’ the interaction. Sometimes its craved and yet still pushed aside in reluctance. I couldn’t be more thrilled to have a husband that is patient with me but it is so frustrating. I become horribly ill with myself a lot.A rigid Feeling of letting my partner down although he seems content to just hold me as comfortably as he can. My insecurities I hide but they are there for sure. It makes me wonder even though in my heart I know that there’s no reason to! Hug & Prayers
Stephanie, Exactly. We know there is nothing to worry about.
NICOLE.. I hear ya! What sex/intimacy? Yet another of the long list of things I’ve been robbed of. Fun clothing is no longer part of my wardrobe as are heels. I’ve ben regulated to oversize elastic waist pants/shorts & men’s boxers all in the name of ease! I wouldn’t have even considered going commando (AKA pantyless) or braless prior to my dianognosis but now, it’s a neccesity, just plain easier! It is really kind of difficult to feel “sexy” when your limbs are spasming…legs, arms & hands. Just not a pretty picture to say the least!
Kim, No pretty picture. I agree.
Today’s subject is one that’s long overdue at least as far as I’m concerned. With MS one thing we’re not is what we used to be. I guess we can sit back, remember and smile. But life goes on and somehow we have to find the way to keep going. I find myself saying I used to now I can’t it does help some to talk about it. I’m sure your husband still looks at you and sees that same beautiful girl he fell in love with. I believe the eyes see what the heart wants. Thank you Nicole for having the courage to take on this touchy subject.
John, Thanks so much for much needed perspective. It doesn’t get any better than this, ” the ryes see what the heart wants.”
Hi Nicole…and thanks for the honesty in your blogs -especially on this one.
Despite all of the other issues our “MonSter” has given us to deal with, THIS one is by far, the hardest one for me. My libido is non-existent, & that would be just fine with me, except that I have this incredibly, wonderful husband, who still tells me every day how “sexy” I am & his libido is still very high. He, like your sweet man, has seen (& done) things for me that we never, in a million years, would want them to, & it sticks in my mind, “How could he still want me?” I look at my reflection in the mirror – arms looking like old crepe paper, hanging down long after the dance was over, thighs – about the same, looking old & haggard before my time (pain will do that to a person) and I think, “Well, I wouldn’t shag me, THAT’S for certain!” So, then, how DO we “get our ‘sexy’ back”? I find myself, more often than not, just going through the motions, but by doing that, I find myself resenting him for even expecting me to feel like having sex when he knows & sees how much pain I have…& I rarely initiate it anymore because the drive just isn’t there. I have numbness (of ALL places!) “South of the border”, & severe burning & “needles” in my hands & feet all the time now, so, along with no desire & poor body image, being intimate isn’t very appealing. Let me rephrase that: I DREAD it. I come off as “cold-shouldered”, & it hurts me that it makes him feel I’m just not interested anymore. But every day it’s the same: he suggests it – I say “maybe”, & then I hope & pray he forgets. I hate living like this….& I’m sure it’s about the same for him. I’m glad you brought it up because I’m sure there are many more with the same problem. I’ve been thinking of seeing a therapist about this very issue for some time now, but I just can’t see how it would help, when numbness, pain & no libido are the root cause, because that doesn’t ever go away. And his telling me he still thinks I’m sexy makes me feel more sad than happy, because I neither look it, nor feel it anymore. I keep thinking that he deserves better & THAT sure doesn’t help. This is THE biggest & hardest issue I’m dealing with @ this point in time because he’s such a patient & loving man who just wants the “old me” back once in awhile – just like I do, but she’s long gone & I miss her, too. So, how to get our “sexy” back….? Good luck to both of us – & if I somehow find a solution, I’ll surely pass it on. Thanks for the post & for letting me finally rant this out. God bless you, Nicole, & keep up the great posts! You give so many of us hope & the absolute knolwledge that we’re all going through the same (or similar) things with this disease, & that it helps to know we’re not alone with these thoughts.
Deborah, Thanks for reading. I actually sat on this post awhile before finally releasing! I’m glad I eventually did. On this one we are definitely no alone.
Deborah, you must be my MS twin! I have been dealing with word for word the same exact issues as you. My boyfriend tries asking, begging, but he gets angry. I avoid him, I purposely make him angry so he won’t ask for sex. I just don’t want anything to do with it. When we do have sex, I feel awful. I cry a lot of the time, which makes him feel like a monster. I have tried so many things, I asked my gyno for help. We’ve tried birth controls, testosterone creams, vitamins, nothing helps. I’m only 27, and this has been going on for two years… it’s just awful. I feel terrible about myself and worry that my boyfriend will get fed up and leave, or cheat… not that I would blame him. If you find anything that helps you PLEASE let me know! I am going to start trying herbal stuff.. I don’t know, I’m desperate.
So pleased Deborah you mentioned This, ive been sort of dating, blew him out before felt like couldnt connect sexually, still sort of seeing him again last weekend had sex!! wanted again on the Sunday just couldnt go threw with it, Sat said to him just take me…….
So i could get it over and done with like Deborah i did resent him a little, i need a miricle or at least some sex drive
Sun kept pressuring me for Sex!! although i was giving reasons why i didnt want
engadge in Sexual activities all he was interesed in saying was he was feeling Horney
its hard work being in this position “single” allowing a man to use my body so he can have an orgasm
Gets me really down 🙁
How we see ourselves in others’ eyes is a difficult issue. We do things we think/hope will please them even as we acknowledge to ourselves we are not giving them what we think they want.
The problem is so much of this is us projecting what we feel and/or want onto somebody else. Sexuality is even more prone to errors because we talk about it so little with those whom we need to have the discussions. Then when we finally do, it is guarded to prevent bruised feelings. Speaking of projection, look at me go. 🙂
I can totally identify with what you say here. I’ve been single for 10years and the last 4 have had MS.
I have had dates and sex but it is different and there’s explaining to do before you do ‘it’.
How do you feel sexy with MS?
I scrub up well, so friends say, but when you can’t wear heels and you’re balanced on elbow crutches when meeting someone for thf first time – it takes the shine off things.
I want a life partner. I want intimacy. I want to be loved. I want to be desired.
When you have a disablity it adds another obstacle to finding love and affection.
I’m sure I have been a sympathy shag before now!
I keep telling myself that I will be on my own now for the foreseeable future, to stop looking to avoid disappointment.