Most people who have had MS for any length of time have dealt with one or more of the faces of MS. As we all know the symptoms and the way MS attacks each individual varies from person to person. Environmental factors also affect MS and our individual response to many of the faces of MS.I am not speaking to the symptoms, the disabilities, and physical issues caused by MS. They would be too numerous to attempt to list them. I'm speaking more about the often hidden, subtlely invasive, and stubbornly refused to admit they even affect some of us.
Let's start with a common one often dealt with my by MS patients, depression. How often have we heard our various doctors ask us if we suffer from depression. What's your answer? I always reply if you tell me an MS patient doesn't suffer from depression, I believe they're telling a fib. How can anyone watch their body basically disintegrate and lose bodily everyday bodily functions due to MS and not be depressed? For many of us the ability to keep your balance, Walk, control your bladder, use your hands, having a brain that works like it used to, not being tired all the time and having to stamina to work like we used to are just a few of the bodily functions and changes that MS strip from us.
Anxiety is also common with MS patients. It's the fear of the journey we are embarking upon and not knowing exactly where MS will take us that makes us so fearful and anxious about our futures. Will we become wheel chair bound in the future? Will we lose bladder control? Will our brain become so fog enclosed that we no longer function like we used to? Will we become dependent upon the ones we love and if we do how will they handle it? Or perhaps is a nursing home or assisted living facility in our future? Again this list varies from person to person and could go on and on depending on your own circumstances.
Some people with MS tend to isolate themselves. I know for me as my disability has increased, I have become increasingly aware that I am no longer the same person I used to be. I have a harder time fitting into crowds so as a result I find I tend to avoid them when possible. I'm no longer on the same eye level that I used to be so I feel like people are always looking down on me either on my electric scooter or in my wheelchair. It's hard to become involved in long conversations when you can't be on the same eye level. As everyone else or move around to talk to various people in the crowd. Don't get me started on moving through a crowd while being in a wheelchair or on the scooter. People In a crowd tend to look rìght over you or even worse run right in to you or cut in front of you. It's like they simply don't see you. Is it any wonder that we sometimes tend to isolate ourselves and avoid things we used to enjoy because we simply feel we don't belong or we're not seen.
For a long time there was another feeling gnawing at my gut but I couldn't put my finger on what it was. I was at a festival on Saturday and a Guitar player was singing a lot of popular songs and some of his original songs. One of his original songs was about belonging. As I sat there listening to his song and the lyrics that he had written, it suddenly hit me that was the feeling that I couldn't ever put a finger on. Belonging. Because of my disability I need someone with me most of the time. My husband and my sons take turns on weekends to care for me. You can tell I'm a bother because I interrupt their activities that they normally do. And Lord forbid I asked to go somewhere like a store to do a bit of shopping becauxe it's like i've asked to go on a cruise around the world. So, I seldom get out of the house. They all think to be happy and complete all I need to do is go and sit in my power chair and stare out the window at the green pastures and the trees and watch TV. Inside I'm screaming. that's not enough that I want to be included in activities like. I always was. But, I get left behind more often than not. I can't ride horses anymore,. I can't play volleyball anymore,. I don't go for walks in the woods or backpack anymore but friends and family still do all these activities without me. Reasonably I understand I simply can't do these things with them anymore? Inside I'm screaming because it doesn't matter if I can't do it, my heart still wants what it wants. I simply want to belong. I want my family to plan events and a look with relish on the weekend they have me to take care of. I want my husband to enjoy my company again and take me to the lakes on weekends even if it's not his weekend to care for me because he misses me. I want to ride on our pontoon and enjoy the lake and the sunshine because this is something I can still do.
We all have our own stories and our own hidden faces of MS to deal with. I'm sure I left many out so feel free to add your own. If we share our own stories of our own hidden faces of MS, it might help others to feel as if they're not alone and understand things they might have tried to keep hidden. Understand that there is no shame in dealing with any of the hidden faces of MS that we have to deal with. They're all linked to the changes in our lives that MS brings upon us unwelcomed. We are very fortunate to have each other to lean on. Never forget to use this chat room to vent or to search for answers or to simply cry on someone's shoulder. It's what we're here for and someone's always in. Remember together we are stronger. Fancy59.
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I'm amazed no one's ever asked you that because it seems that every doctor I've gone to have asked me if I'm depressed. "Normals" as some people have expressed in response to my post really don't understand MS because if they did they would not ask us. I guess this is the same for many diseases that alter your life and your life's path. Fancy59.
Sometimes I think we keep things bottled up because we feel embarrassed to speak our thoughts out loud or put our put them into writing. I wrote the post to let people feel free to express their feelings and to remind them they are not alone in this fight against MS and all it entails. .
My heart breaks for you.. I get what you are saying! I am guessing there is no marina anywhere nearby that has any sort of a Hoyer lift to aid and assist in getting you into the pontoon boat.. I do love to be in the water/ on the water..🙏🏼
Do you think that your family just doesn’t realize how much you want to be a part of the fun stuff too? I hate the feeling that I am slowing down the group and have to have so many of my special needs met.. it is exhausting for everyone involved.. being in and around the water lifts my spirits the way almost nothing else does.. you really write beautifully ☺️
I wish that was the case but it isn't. Only my youngest son really gets it. He'll tell me when it's this weekend to watch me, that mom, when I get home on Saturday we'll go out and do whatever you want. My old son is married and expecting twins anime in the next 2 or 3 weeks so hes got his plate really full right now. My husband is more concerned aɓout his own needs.😬 We"ve ɓeen married 35 years. Before I got sick I took care of my own needs. So.....basically, same s**t, differet day.😒
omgosh I understand where you are coming from..I have encouraged my husband to go on and take his walks in the woods, go on hikes the way we used to.. usually I am relieved to be left behind but it can still sting the soul.. I am pretty recent to this forum and for all the years I have had MS I never had anyone else to talk to about this sort of thing ( the rest of my friends/ family are sympathetic but truly don’t get what we go through everyday) thank you for sharing 🤗 I hope this is your weekend with your sweet son and you can get out and have some fun.
you hit the nail on the head!I I believe we all mourn our old life.that is the saddest part of this insidious disease.Every day i wake up and think i am going to do what i did 15 years ago. so I try to pull my boot straps up and try,even though in the end i probably will not be able to do it,lots of tears daily,this is a terrible disease why why why why ? life can be a ?????? sunshine will be back!!
You also hit the nail on the head.I think we all mourn what we used to be before this monster interfered with our life. The sad part is my heart is willing but my body is weak and as a result I wind up doing stupid things.
I read this yesterday but I didn't reply because I didn't know what to say, but I wanted to because such a long post deserves a proper answer. I still don't know what to say really.
Yes, I agree. Not with the details of the situation because mine is different, but there is something inside me screaming too, because of all the things Í now can't do, I used to have a life, I used to have privacy, I used to have independence etc etc. Now I have mere existence. I have been out of the house twice since I got home.
I have just deleted the rest of what I typed, because I can't continue.
I wish we lived closer so I could give you a big hug.We have to stick together and fight this monster that has attacked us. Anytime you want to talk or need to vent simply message me. We are kindred spirits and I will be happy to speak to you whenever you need.
MS is cruelA lover, without a loveA fighter whom has lost his fight
An adrenaline junkie without a fix
No longer amount the living, for this life is no longer living, its just waiting and praying to die... begging, pleading to heaven above... to end this endless nightmare, suffering and pain... oh grim, please stop taking happy people, needed people, loved people and have mercy on me and bring this to an end...
I've wispered that prayer for many years now... thank you MS
what you wrote is all very true! This is not living . This is surviving..
We have to find our happy place. The alternative is really not an option. We have to do it for us and for others.
Trust me - I was nowhere near happy when all this started being really bad and I didn’t have an answer or medicine! It was rough Guess it was rough for the other half too because he decided to fly the coop - yes, he’s a chicken!
We have to find and make our happiness. Mine is in animals, music, and art. I hope you find yours! We are survivors, we are fighters! Normals have it easy. We are the chosen who have it hard! I put a lot into my faith, I believe in and lean on God and Jesus- they help me lots!
Best wishes to you and all who may feel this way! (It’s natural)
No, I've been on this site for many years, off and on. I've been fighting this affliction for over a decade. There is no answer, just misery, suffering and anything else was me just trying to "fake it till you make it" and I'm sick and tired of pretending this isn't one of the most awful things, the cruelty of it. ... Now I'm facing the truth and it sucks... so for some this affliction is managable... for others of us... it is not even close.
I'm fed up of being told to be positive. I don't have religious beliefs. I don't have pets and just as well, it would be no life for them either. I don't have grandchildren, or children, or a partner.
I talked to the Neurologist a few weeks ago and told him that I still haven't really got my head around the diagnosis. He has said he will refer me to a psychologist. I'm waiting, or maybe I'm not - I'm certainly not holding my breath.
I thought being on here would help but my experiences seem so unlike everyone else's that I still feel alone. A large part of me still doesn't really believe it, and I can probably predict the answers I'll get to that.
Your experience sounds very similar to mine. I am also completely alone, no wife or children... MS has robbed me of life and I'm just an empty shell... praying for the end to come sooner rather than later... I don't wanna do tomorrow, for I sure as he'll didn't want to do yesterday... it was a bad one.
Kit, we all travel down the life altering, rocky, and hazardous path that MS demands we do. We hit different obstacles at different times and some people's path is not as difficult or rocky as others. When I was diagnosed I couldn't believe it. How could someone who stayed as healthy and worried about her diet and stayed thin and was in the best shape of her life come down with this terrible disease! It didn't make sense and it didn't seem fair. I screamed to God what did I do to deserve this, but no answer was forthcoming.
Reach out and grab my hand and somehow we will make it through the bad days as well as the good days together. As long as there is life there is hope. Together we are stronger.
Oh Allen, I don't know what to say to your whispered prayer. Please please please know you are not alone and we have to fight this terrible disease. To give up is to let MS win and we are not quitters. Instead of praying for the end redirect your prayers and pray for a miracle to happen and MS to be cured. Where there is life there is hope. We have to be strong and continue to pray and hope and fight!
Allen, many of us are in the same boat that you are. Sometimes I feel unlovable too but then I realize I love myself and nothing can take that away, not even MS. Oh, I don't love my body right now but inside I love my spirit. I wish we lived closer so I could give you the big hug you desperately need. Why can't you have a pet? Allen, they do more for your soul than anything. I can think of. I have a little white lapdog, Chihuahua mix, that is my little soulmate and guardian. She worries so much about me and doesn't want to leave my side. I think she is my sanity and I don't know what I do without her.
Gosh, I am sorry, Fancy. Your words ring true, and yet they make me want to cry. Please PM me any time you need a listening ear. I do not have any answers, but I listen well. 👂
Thanks. Just writing and talking about things helps me more than people can understand. I'm hoping it also helps others to be able to express their thoughts and know it's not your fault and there's no guilt in struggling with some of the hidden faces of MS.
if you are lower than everybody else why cannot they sit down on low stools so that you’re at your eye level? So that they are at your eye level? Sorry I am speaking this and sometimes it doesn’t come out quite right. Something you said at the beginning made meThink that they put you in your chair they put you in front of the window to look outside and then it’s kind of like you’re just a little potted plant in the windowsill and they go off and do their own thing…But you’re not a little potted plant you’re a human being! Is your family aware of how you feel inside? Are you comfortable telling them that you feel like you’re screaming inside? I understand the feeling of isolation from people who are The same room with you. They can all be chatting with each other and have no idea how you might be feeling. When I go to church I feel like that a lot. I find that I do better with a few people or just one person at a time. The people in my church are very kind and they like me and I like them but the problem isThey have their own lives and they don’t have the time to really understand much about me. That’s not a mean thing it’s just a reality. In circumstances like this I feel lonely. Depression can you come from all of the losses and changes from the disease, it can also be a symptom of the disease. Antidepressants don’t work on my depression not anymore. The things that make me happy are going to the gym and moving but moving on the treadmill. That’s the only time I can walk faster than what’s possible using a walker. I am just grateful I can actually go to a gym still.
Your description of a planted pot is a very appropriate description how my family treats me. I wish you weren't true but it is. I never thought of it that way but it really fits. One Thanksgiving my husband and the boys and I went down to his family for dinner. While they put the final preparations on the meal they wheeled me in front of the football game in the family room. Then the family went on the other side of the kitchen island and carry on a loud, laughing conversation and I was left to sit there by myself and watch the game and the kids playing in front of me. Inside I was screaming it wasn't fair. Sometimes I feel so lost. I truly think normal people have not a clue. No, Let me rewrite that. I truly know most normal people have not a clue unless they've been through some life altering event, disease, or illness!😤
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