My mom has had MS her whole life and I could never relate to someone on having a parent with a disability. Her MS has gotten worse to where she's fully wheelchair bound and this happened around when I was 13 then she lost her sight to glaucoma when mistaking it for a symptom of MS (IMPORTANT BTW)
I feel bad telling my moms business like I'm going behind her back but I just need to relate to somebody or talk to somebody. I'm away for college and I miss her like crazy. I've been so used to taking care of her and now it's like.. what do I do now, you know? She's my best friend and I get so homesick. We now have a home nurse but my sister still helps. I have two sisters but the other one has Downs Syndrome so we also had to take care of her too. When I tell you my life has been a roller coaster. We also come from a single parent family and my eldest sister basically runs the house. I don't really know where I'm going with this, but I found this website and it was as if a weight was lifted off my chest because I have been looking for something like this for YEARS. Any advice please let me know. Am I selfish for leaving for college? Am I gonna regret leaving home?
Hello corrine_renee, Welcome and thank you for being a responsible person and loving your mother. And now you are a student, and your job now is to do you best to learn and take care of yourself, Like the old Arny ad: Be all that you can be. As a young person you have plenty of energy, with that you move as fast as you can to do everything you can, you discover the world, dancing, sports, other young people, and fun.
I have learned one thing about life, regret is the worst mistake of mistakes, what ever you do, what ever you think about do, ask yourself one question, or maybe two, Will i regret doing this, Will I regret not doing this. And onlt you know the answers to those questions.
You have been spending your time caring for your mom and sister so change is different for you, and the change is you being alone with only you to worry about, it is a time for you to discover you, who you are and what you want, happiness I hope.
Learning to be independent is the best skill you can learn, how to take care of yourself, what your needs are, and of course , what you dont like. So your job right now is also to find out who you are, not all the shoulds people tell you you should do.
And you can share your feelings with us about living with someone with ms and what it feels like to have a parent with ms, I for one would love to learn what that is like.
Thank you for visiting with us and for sharing, maria
Thank you for that.
Honestly, yes, it has been hard. But I can't imagine what my mom goes through. She is a very honest person so she would tell us the days she's not feeling well or when she goes through exacerbations. I feel like my mom never gets a break. I also hate seeing or hearing stories of how you get worse with MS and they show it online and I can't stand that. We all grew up pretty fast, but I'm thankful for that. My mom is also a very bubbly, laughing person.
We laugh at everything, even the messed up stuff. I remember one time her and I chilled on the bathroom floor and just casually talked at 2am after she cleaned up the bathroom and would rest. She would say "I can do it, shut up" and we would let her as she would go just to organize the cabinets and keep herself busy. Sometimes, she would cave in and we would help her go back to bed or to get in the chair, but shes so strong. Then she would casually be cleaning the kitchen at 3am an then her and I would just talk for hours. When I tell you my mom has amazing arms and still does to this day. She would find own ways to work out her arms, obviously in weird ways because she hated wheelchairs and used to drag off and just push herself around. To this day she has a arm band (I forget what those are called, you get them from physical therapy usually) and would do workouts on her arms in bed and lift herself up and down like pull ups.
Her losing her sight was devastating and I don't think I will ever forgive God for that. Because she took her hidden glaucoma as an MS symptom. It was like my heart shattered into a million pieces. I used to say when I was little that I would take anything to see my mom walk again. But now I will take anything for my mom to see me again.
I moved to New York City for college and her and I have talked about this day since I was 11 years old. I wish she could see what I'm doing, but I tell her everything to the best of my ability. I can't deny I get jealous of others who have both parents in their lives and the ones who take their healthy, present, parents for granted. I can't deny I felt out of place when my big sister was the one that helped me move for college and dropped me off for orientation when everyone else had their mom with them. I do know that my moms proud and I talked to her like twenty times a day to the point where my mom tells me to stop calling her and go socialize. IM A BABY LOL
I am wheelchair "bound" too. Take it from someone who has a young daughter, you take as big bite out of this opportunity as you can. Dont abuse your body or mind in college with drugs, alcohol and partying. As maria said, "Be all you can be". You'll have plenty of time to care for your family members later. Right now I'm sure your mom wants you to spread your wings and FLY. We MS folks are incredibly strong, resilent people. Call mom, keep in touch, tell her all your successes and failures but remember, this is your one and only shot to make a life for yourself before you cant make big changes to your life anymore without extreme consequiences. Make your mom proud! GO FOR IT! I am 100% sure she wants to see her princess fly. She wants to brag about you to her friends! Go on, give her a reason to brag. Best of luck. God Bless!
Thank you so much, everyone. I really appreciate it. :)
Hello, reading what you wrote made me a little teary. You are so strong for being there for your mom. I often wonder what my daughter feels about my diagnosis. She's 15 years old and I don't know if she's holding certain feelings in. How did you take it at that young age?
Be honest with her, and do not be scared to tell her how you're feeling. My mom and I always talked about it and I think when you confront whats going on, it's easier. Just be open to how she's feeling but still stand your ground as a mom. My mom has a friend who has MS and her son just was so spoiled an now that she's gotten worse, she has no help. Don't let her ever guilt trip you and tell her how it is going to be and that you might need help. (Depending on your symptoms that is, etc)
I noticed my mom tried to spoil me alot to 'make up for things we couldn't have' and I refused because I already had what I wanted in life. I honestly just accepted it and started to help around the house as much as I could, which isn't really that hard and it really is gonna help when she grows up and decides to live on her own. I just knew something had to be done on my part.
corrine_renee, thank you for sharing. It is fun to hear you talk about your mom and her sense of humor, she is a trooper making the best of a situation and laughing about it. She is very wise and has adapted well.
You are in New York City, wow, wow and triple wow, still the greatest city in the world. Have you gone to Greenwich Village yet? If no, you MUST go to Cafe Reggio on Macdougal Street, it is a tiny place where when I lived in NY all they served were coffees and a bit of cake, but from the photo it has not changed, it has the same ornate benches and chairs, maybe even the same wall paper. It is a place where great writers and thinkers sat for coffee, it is like living in history, it gives you a sense of what New York was like a hundred years ago. When you walk down the streets, look up at the old buildings and see the decorations they have up at the higher floors. After you go to Cafe Reggio go down Broadway to Rector Street to the old Woolworth Building, if it is open go into the lobby and check out the marble floors. Hammacher Schlemmer at 147 East 57 St and check out the stuff, wont cost you anything to walk around. Also go to Sachs Fifth Avenue and wander around the ground floor. It is getting to the holidays, window shopping on Fifth Avenue will all be holiday decorations, you can walk for hours and not spend a penny! I still remember feasting my eyes on window shopping, and when you get tired just stand still and watch all the people. You are in the greatest city in the world, just looking and observing will broaden your life forever, oh, you lucky duckie, I am so happy for you. And when you look at the people dont be surprised when you see a famous face, give them a smile and be happy you can give them privacy on a crowded street. Do all the free stuff, and remember to study, so, what are you studying??? silly me, you are there to study, learning is just the bonus!!! And please please share with us what you are most surprised about in NEW YORK CITY.
Thank you, thank you, thank you!!!!! I got so excited reading this and I wrote down all the locations you just mentioned. I will definitely check them out!
I study Musical Theatre and recently graduated from AMDA with an associates and I plan on getting my bachelors, but I want to take a year off to enjoy the city, audition my butt off and work. The school is a conservatory so you go there for a year and a half then you graduate. We do not get the same type of holiday or semester breaks so that is why it ends so early. To get a BFA, I have to go to their LA campus and I have never been to the west so maybe one day.
I told myself one day I would go to NYC during the christmas time. It is my favorite. The most surpising is the people and the subways. I was so scared the first time I took it, it felt like I was in a rocket ship. The train wobbles all over the place and it'll randomly halt. I also have gotten into a fight with a crackhead once, it was so scary lol. I love going to 34th st the most and I love the Macys on 34th st. It has maybe six floors. I love window shopping. New York has made me form thick skin! I also have ran into numerous celebrities but have been too scared to go up to them. everytime haha.
The old trains were made of steel, the ones that bounce were bought after the war and made in Japan, that is why the seats are so small, Have you taken the D train to Coney Island yet? When you do go out of NYC you will see the signs on the platforms: TO CITY and FROM CITY, Nathan's in Coney Island makes the best French Fries, I think it is the salt air. But you dont really have to spend any money to grow in New York,
And all the museums are grand. Please keep having fun and share the fun with your mom and us, we love fun.
Ah, yes! I went to Coney Island for the first time this summer and it was so beautiful! I fell in love with Nathan's and it reminded me of the hot dogs I would get at home from the Orioles stadium. Such a nice place, I went there so much this summer, I also enjoyed the train ride as well.
Most people are afraid of crazy people because their behavior is unpredictable, if you are outside and feel threatened start waving your arms, rolling your eyes and talking out loud. 'Why didnt you listen to me, I told you they would be back, hurry out of the way before they see you.... make up your own dialogue.'
And if you think you are being followed, do not go home, go in the other direction, go to a hotel lobby, a diner, a store or if they are closed, walk around corners and if you seel the person still following you, at the next corner run zig zagging streets, it will take awhile to shake off the feeling of being threatened but at least your nest will be safe.
Thank you for that! I needed this haha!! I will keep it in mind.