“I felt sorry for myself because I had no shoes — until I met a man who had no feet.” ~ Jewish Proverbs
I’m Dying!
Or at least that’s what I feel like.
MS tends to put me in a fragile wavering psychotic state.
Between the optic neuritis, numbness, fatigue, dropping things, tripping and falling I think I may be losing my mind.
My dream for normal used to be so strong but now it is slowly withering away. Each passing day brings me less confidence that I can get my former life back. I always keep a little hope alive but that may be because I can’t face the reality that I will never get back to normal again.
MS just makes everything suck sometimes. Like when I can barely push my wheelchair two feet without getting tired. Sometimes I can only do two rotations before my arms begin to give out. I don’t think that hardly being able to move about is a good sign at all.
Despite that limitation, since my home is small, you would think that making it to the restroom would be easy even for someone who occasionally has trouble maneuvering around. But that’s not always the case.
On one of my particularly bad days, while trying to stand, my right leg decided to give out and make me better acquainted with the floor. I was trying to go to the restroom and ended up on the bathroom tile, only a few feet away from the toilet. To further humiliate myself, while face down on the floor, I could no longer stop myself from urinating. It began to trickle and I knew I had only seconds left before I was at the point of no return. I crawled and actually made it to the side of the toilet but that was about as far as my arms could pull me. Then my bladder could not hold it back any longer. Suddenly the urine broke free and it was a full-blown gusher.
I began to cry.
Yes, I was lying on the bathroom floor crying and peeing at the same time.
The worst part was that I could hear my husband, Tommy, coming into the front door. He was back from a 30-minute workout at the gym. He rarely leaves me at home alone for more than an hour. I knew he would be heading straight to the restroom to cleanup after his workout so I only had a few moments. I quickly tried to close the door by kicking it shut but my legs would not respond. Before I could think of a plan b he had turned the corner and was standing over me.
The funny thing about Tommy is that he always appears so stoic.
He asked me, “Are you alright?”
Totally embarrassed, I shook my head yes and continued to softly cry.
He lifted me to my feet and walked me over to the toilet. I sat there while he helped me get my clothes off and then assisted me as I got into the bathtub. I ran the water and he got me towels. As I sat in the tub soaking he cleaned the urine off the floor. It was taking him a while as it had spread throughout the bathroom. I sat in the tub watching him. I started to think that he didn’t sign up for this. If I were only normal again this would have never happened.
I just kept saying, “I‘m sorry. I‘m sorry. I‘m sorry.”
From his hands and knees while crouching in urine, he looked at me and said, “Don’t ever apologize for having MS.”
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This article was first published by MultipleSclerosis.net.
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I applaued all of you strong women blessed with stronger companions. I don’t think any one would sign up for this disease if not for love. I carry extra unclothes and a change of pants. Because my supervisor demands that contact some one to cover me for lunch, bathroom and any other breaks. my co-workers are compassion people,but i keep diary of near missess, misses, and other restroom problems he has impossed on me to fight my case. I note that when Ii’m in pain I have more issues with the bathroom.
Hello Nicole, I read your story and it was so inspirational. I wanted to reach out to you to give you some information, some Hope to something different. See I have Degenerative Disc Disease with symptoms of MS. Have you ever heard of Nutritional Epigenetics? It’s through a company called Reliv. I have had wonderful results with Reliv for 21 years as I suffered greatly with a poor immune system. I no longer deal with the symptoms any more and my quality of life is so much greater because of this nutrition. I am 53 years old and I am enjoying life here in Arizona. When I was introduced to Reliv my main goal was to build my immune system and at that time living in Chicago that was a feat that was quite difficult because of the cold. I was 32 yrs old dealing with bronchial asthma and chemical sensitivities and that went on from teens to early 30’s. I had a terrible immune system. I overcame many obstacles of infections, breathing and symptoms of unexplained pain and as time went on I was able to stop all my medications for all my respiratory problems. It helps with my auto immune so much so that I reach out to many people with auto immune who may want to try this nutrition. I can talk more about it if you would like? Reliv has given Hope to many people through the years.
It’s apparently a higher power who pointed me to this entry this morning. Just last night my left leg gave out and I ‘bounced’ off the toilet then my wheelchair and landed on the floor. There is one week every month no woman wants to be caught with her pants down. They were down, I was caught. We have a stash of those seat pads to protect the cushion in my chair. It took A LOT of leaning back and forth, but I finally got it under me. With this sudden cold snap the floor is absolutely freezing. The pad helped with that, too. Two hours later hubby got home from work to find me asleep on a folded towel (the one he used that morning) spread across the toilet lid. He hefted me up on the toilet I was aiming for in the first place. I kept apologizing he kept telling me not to. Our husbands seem to be cut from the same cloth.
I’m crying during and after reading this. What a good man and what a strong woman you are. I think we all apologize bc we feel bad for what MS does to our loved ones. But he said it perfectly. Never apologize for this horrific disease. God bless.
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I hope that the leg is better and it was just a question of the weather being too hot or just a new wrinkle that you needed to adjust the level of your activities for to accommodate such a change – a constant process.
I remember crawling on the floor to get to the bathroom in the early days. It scared me silly! At the time I was misdiagnosed and MS was not on the radar – so I did not know how to take care of myself to the extent possible – and I started to be labeled as depressed, anxious, etc. You, of all people, Nicole are not psychotic. To respond to the reality of that situation the way you did is completely NORMAL. Some of us tend to be very hard on ourselves – I am getting a little better – but it does create a certain stress to do better and better. That works out in some areas but not for MS.
I hope you are doing much better! Just think of your favorite thing to avoid the stress from eating your energy. I think of fields of daffodils like the scene in Dr. Zhivago enroute to the summer house.
The Lord created the “perfect” mate for you!! Your story is one of unconditional love!! I admire you far more than you realize. I’m guilty of not worrying about you nearly as much as I should, because I know without doubt you are being well taken care of and that Tommy is giving you the BEST care you could ever get!!
Thank you for sharing so candidly and genuinely how you feel!! As someone who has known you intimately since we were 14, I’m still learning you and getting inspired by you and loving the person you were and the person you are now even more. I am humbed and honored to be able to call you FRIEND!!
A love story.
Nicole,
Thank you for posting your story. I was just recently diagnosed and it seems all I do is apologize for my issues with the MonSter. I too struggle with not being able to do the simplest things any more. I have 12 grandchildren and I can’t even babysit; nor keep up with any of them even the littlest. But they and my children are my reason for not giving up.
Again thank you for such a wonderful story.
Your writing is to the bone and it breaks my heart and my head and my body and my senses and my sanity reading about your struggle and your yearning to be ‘normal’ again. You touch me – even though you must never apologise for having MS I can say how sorry I am that you have to live with ms…. because I am.
Thankfully nothing that extreme has happened to me yet but I still remember the first time I had to use a cane, and a walker, or an eye patch Cus I was seeing double . It was unbelievably embarrassing for me to leave my house and go to the grocery store. Or when I was working and would have to crouch down to count in or something and I would have have to call out on the headset “can you help me up? ” but one positive thing I can say that came from those things is now I REALLY don’t care what other people think. And that’s a good thing. Self pity Is one of the most destructive things imaginable. Just gotta push on day by day. In addition I’ve learned to listen to my body now (because believe me, when it decides it’s done, IT IS DONE.)many times I’ve had to just completely stop what I was doing and just stand there or find a seat quickly before my legs gave out. But as much as that all sucks I’m still able to ride my bike, still able to keep up my house, still able to have fun. So in the end my response is still
F**K MS!!!
Nicole, Tommy seems like a great man. You are very lucky to have him. Let him know that MS sufferers really admire his strength and his love and dedication to his wife.
this made me cry a bit….my husband married me knowing i have this MonSter but he hasn’t had to really see or help with anything yet… just my forgetfulness and my wild emotions. I am really worried that if something like this ever happens to me he will not know what to do or how to respond. it is a worry i live with everyday, that if push came to shove he might freak out an bail… i love him and i know he loves me. i just don’t think he understand what he signed up for
Hi Nicole,
Your account is so touching that tears cascaded down my cheeks. Then I smiled when I saw the lovely (literally) picture of you and your husband. What a stunning couple! You’re so lucky to have each other. It’s six and two threes in any good relationship and I think you can truly count your blessings.
It’s impossible not to grieve what’s been lost and be frightened about what the future holds. I’m not sure that there’s any way round that other than appreciating that not only that sh*t happens, but that sh*t has happened to you and me both. Now, it’s going to be interesting to try and negotiate the clear(er), clean(er) paths, plus or minus the perfectly normal emotions of fear and rage etc.
On a practical note, would an electric chair be less fatiguing?
Keep writing, it’s refreshing to read your outpourings.
This is encouraging to read especially about the way your husband assists you. I too have MS and have voiding accidents, cognitive difficulties, falling, leg weakness, and a list of other issues. I have been with my boyfriend for 8 years and he is always there for me when I need him, in spite of the fact that he to has MS. He does not go thru as much difficulty as I do but nonetheless as we all know, MS does not affect two people the same way and that does not mean because he is not showing signs of weakness or trouble with his health, that does not mean he is not dealing with issues of his own. I too apologize every time we leave the house we are at times stopping for me to go void or turning back to go home so that I can void. And he always says there is never a need for you to apologize. I am grateful that he kind of knows and understands what I go thru.
Yes, I have allowed MS to embarrass me. Not like when I was first diagnosed when I was 40 and went from a personal trainer, racewalker, spinning instructor. But by now- as my disability isn’t as clearly shown on the outside as on the inside.. I am sometimes embarrassed thinking that people must just think I am lazy when I need entire days in the bed. Or that I am one who desires the effects of drugs because I must take amphetamine for energy to accomplish tasks of daily living, I must take sleepers to of course sleep. I need pain management, bladder management, meds for symptoms of all kinds. I am embarrassed when people no longer ask me to bring along wonderful dishes to family events because they know its only a 30/70% chance I will follow through or even be able to attend. Mostly I am embarrassed when I realize that cognitively I am no longer able to figure simple things out- just can’t wrap my head around them and that is embarrassing. I guess for me the more appropriate word would be humbling.. rather than embarrassing. For I know people know I can’t help these things. But it humbles me that they must know about my incapabilities.
I too have been blessed with an amazing husband who has been my rock for twenty plus years and has seen me get worse and lose a lot of my independence. He has taken over a lot of things for me. I no longer drive. Can’t shower by myself. Can’t even get into bed by myself anymore! He is a wonderful man!
Dearest Nicole,
What a wonderful woman you must be — to have built such a positive partnership with your husband! There are so many people who struggle and complain about their relationship — without MS! Such an amazing couple — I also can deeply relate to the experience you have shared. Thank you for opening up your life to us. MS has definitely brought us “a new normal” — simple to say but not easy to accept. Please know that I am sending you and yours waves of support — prayers and wishes that even in the midst of this MS experience your life continues to be fabulous every day!
Reality can be hard to accept. I feel for you. I would have been in tears too. I don’t think about the future.
I too have a gem of a husband. He takes care of me. I find myself apologizing on a regular basis. We would take care of our husbands if the situation was reversed. I find comfort in this.
We were dealt a crappy hand. All we can do is play our cards the best we can. You hang in there by doing your personal best.
Your husband rocks. What a great guy! Remember you would have stepped up to the plate if the situation was reversed. We have to find comfort knowing this. We are both lucky to have such caring husbands.
My husband was diagnosed with MS in 2002 – we met in 2004 and after a couple of ‘dates’ he told me about his diagnosis. I was falling in love with this kind man by then and would never have let a diagnosis of MS stop me from developing a relationship with this loving man. Since then the symptoms have gotten a bit worse – his gate, cognitive functions – and I do my best to always show complete compassion and empathy. I can say from a caretakers aspect it is difficult sometime. The hardest lately was yesterday after it was recommended that he take a psychological/cognitive test that he really saw what I have been seeing in him. Seeing tears stream down his face after the test telling me “my mind is really mush” was just heartbreaking. My love and support to all of you. Wishing you calmness, peace and especially the support you deserve. Love, Bobbi
Reading this brought tears to my eyes, cuz boy do I feel you on this! Thankfully, you’re blessed with an angel in the form of Tommy. 🙂
My Rick seems to have come from the same heavenly stable. I was diagnosed 3 years after we got married after many, um, “clumsy” incidents of my own. I fall out of the shower, having lost my balance and taken everything (shower curtain and all) with me on the way down. I’d learned to laugh at these accidents by then, but I couldn’t help desperately needing to cry. Last thing I ever expected was being found in a heap and unable to right myself at age 33. I apologize profusely between chuckles when he walks in. His response: “This isn’t your fault. Now, where’d you leave off? Do you need help finishing up?”
Sorry, this just got memory lane rolling. 🙂
I think your husband and mine were cut out of the same mold…aren’t we lucky! Now that is funny in itself…LUCKY. The MS is not lucky..but it really helps to have a partner standing by you. My husband always comes up with something funny to say and we end up laughing before its over. About four months ago I stopped being able to stand with a cane…my legs would no longer support me. I was feeling pain for the first time with MS. The pain was in my back and wrapped around to the inside of my legs. Yes, I needed help going to the bathroom. I could not get into the car by myself and to be honest, I really didn’t want to even sit up very long. Pain is exhausting not to mention MS. It dawned on me that I was feeling heat in my lower back. Mybe it was a back problem, not MS. I went to a neuro surgeon and after an MRI which which showed scoliosis in the lumbar region (I already knew about)…but it wasn’t bad enough to require surgery. I was having awful muscle spasms in my legs that would keep me up at night. Actually, I could not even find a position to even sleep comfortably without pain. I went to the freezer and pulled out a bag of frozen peas, wrapped them with a dish towel, and layed down on them both during the day and at night. After a couple of days the pain started subsiding. I can now stand again with a cane and take a couple of steps. I can actually get into the car by myself and go to the bathroom by myself. It is still not pretty, but I am feeling some independence. I take magnesium for the muscle spasms and am sleeping at night. But I keep frozen peas handy in case I feel heat in my back.
I also have a saint for a husband, but even saints have their days. When we married 8 years ago I already had MS for about 10 years. When we married I was able to bake (something I love to do). I was able to do the grocery shopping and all the errands to run a household. No bladder or the other accidents. Now I use a walker and have had many accidents. If he is home from work he is right there….But he does quite a bit of traveling for work and last year I fell a few times when he was away. Broke my foot on one,broke my wrist on another and countless times smacked my head on the way down. I now travel with him (we go by car) but everything falls on him. I sometimes wonder if I would be better off in a nursing home. I have always been self sufficient so all of this makes it harder. Thanks for letting me rant.
What a guy! Not everyone has a great partner. I am fortunate as well. I just need to be more accepting of my husbands help and less hard headed. I myself had a bathroom moment as well. I was home alone in the bathroom proceeded to get off the toilet my legs gave out completely. I ended up stuck between the toilet and the wall on the floor for an hour or more, of course, in tears What a disgusting place to be. Thank you for sharing your thoughts. Please know you are not alone in this.
Such a touching blog. My husband and I divorced in April 2013 and he died 8 days later. Being divorced was bad enough but then he died. I never wanted this. Dan knew I would always be there to help him no matter how bad he treated me. He knew he couldn’t take care of me; he spared me the heart ache of taking care of him.
Sorry to hear you went through that very humbling moment. I’m so glad that you have a husband who treats you this well. You deserve it!
As for your “former life,” quit looking back. It does absolutely nothing to empower you. In fact, focusing on the past breeds depression while focusing on the future creates anxiety. The past is done. They call it the past because that time has passed. It’s gone. It’s memories. Instead, make a conscious effort to focus on the present. It’s all any of us actually has any control over. Focus on the things you can do today. No one can reclaim their former life, not even physically healthy people. It’s just the nature of our existence. Keep moving forward. <3
So true Rachael. The past is done, over. Focusing on the PRESENT is all we can do. We still have much to be grateful for.
Oh Laurie how I feel for and sympathise with you.Luckily my husband is amazing – he didn’t sign up for this but he still asked me to marry him and cares for me daily.He has to work during the day (so do i) but I know he will always be there.sometimes I apologise when things don’t go as planned and feel guilty but he always makes me laugh and things don’t seem so bad xx
You and I have similar husbands. With all my trips, falls, and accidents, he never complains. There have been times when I thought he’d want to chuck me in the nearest dumpster, but he is a living example of the marriage vows –“in sickness and health, for better or worse.” BTW, your Tommy is a cutie!!
This really touched me, I can so empathise with this post. Some days I can’t be cheerful anymore and have to weep a little weep. Your husband sounds amazing (I guess that is why we marry them, mine is too) – but it is a worthwhile reminder to help me remind myself – it is the disease not me.
He is wonderful. I hate that the above incident that happened to you. I loathe MS and how it does these things. Please do not think that the next sentence is meant in any way to minimize what you went through. I’m just super glad that you have such a rock to help you through this…
AMEN KT!!!
I feel the exact same way about my husband, Nicole. Well, ex-husband. (Long, non-MS related reasoning.) He used to say that exact same thing. And it is true! This disease sucks. It f&@/ing sucks. The embarrassment level of any accident, any fall, any spasm is something that the majority of the public will NEVER understand or truly sympathize with…but that’s ok. It’s not fair, but it is ok. Just remember that you have over 2.2 million people worldwide who bare our same cross. You, me, Montel Williams, Annette…we all know how each other truly feels. Remember, everyone has a cross to bare… this is just ours.
Wow Nicole. For anyone with MS, this is so very poignant. Long ago I gave up on every trying to use my legs. I’d had too many falls, too many injuries, too many embarrassing or helpless moments. And I am pleased to say, since I have totally given up trying to use my legs for anything, since I started using the power chair for everything, I have not had even one fall. Your husband is a saint. Mine spends as many hours away from home as possible. I feel he can’t stand to be near me. When I need help, he seems to be enraged even though he rarely says anything. When I need my once-or-twice-a year ride to the dentist or dermatologist, he rages at me for hours about how he shouldn’t have to waste his time driving me around. Count your blessing.
Oh my goodness. That is horriblle Laurie. I’m so sorry for the way your husband acts.