I don't even know where to begin. Mom's health is getting even shitier than before, she can hardly sit anymore so today she asked me to move the computer screen to the front of her bed (not on a desk as it was before). It's crazy, I mean. Isn't bed in the middle of the room enough mess? Isin't the thing that I have to sleep in the same room with my mother when I'm 19 years old enough mess? Children changing their parents diaper is not right. It's not the way it's supposed to be. Seeing your parent getting weaker isn't right. Hearing her saying that she no longer wants to live is not right. Hearing her cry because of her enormous pain isn't right. Knowing that she understands that she's the reason I don't do a lot of things isn't the way it supposed to be.
Sometimes I want to hit myself because I understand that I blame her and it's getting so hard to love her. I never thought that loving someone could be hard. It's just so messy. Too messy.
I don't tell people that she's sick. They probably have no idea what multiple sclerosis is. You can google it if you want. But I don't want them to know. Because they never understand the amount of shit it contains. And they keep suggesting things, riddiculous things. They think it's just simple, they imagine it's ok. And I can't keep explaining how shitty it is. Not anymore. I let them think that there she is, working or reading, or sleeping, or got a flu and that's why they don't see her.
She's wearing those dark blue shiny sweatpants because she can grab on them to move her legs, and she can't even wear a bra, her body hurts and has wounds and she's crying and screaming sometimes, and she feels lonely and she's getting weaker and sometimes I imagine how it would be without her and sometimes I think that I would be free then and I want to hit myself then so badly. And seometimes I yell at her because I think that some more time living like that will kill me inside.
And I don't want to think about how she feels. I want someone to take care of me and to understand me and no one can. And I feel so alone so I sit and watch movies all night long because then I can go to other places, where romantic things happen, where people are healty and the only problems they have is love life and break-ups and dead dogs. And I want complicated relationships, heartbreaks and other love life related problems too because I can no longer face the big ones.
An I'm just so broken inside that sometimes sit and look at nothing, I have no motivation to study, or read and I don't even write that much anymore because I'm so messed up inside. I try to be as brigth and shiny as possible but sometimes I just can't help being dark and twisty. And somtimes I want to just run away and never look back but my conscience is huge and doesn't let me do that.
I need people to read this. I need someone to know this. I need someone to understand me even though nobody can.
And I'm crying now like a baby and been through this whole blog. She's sleeping now and I'm in the other room. She doesn't hear me cry. And I know that I could help her by doing some more massages and making more fresh juice and stuff but I want to life my life so badly. I want to take care of myself.
Because in the end of the day it's me, my dreams and my movies. And I know that I may be stopping myself from dating anyone. Because I'm scared to let anyone take care of me and love me that messy. Because I know that taking care is hard. And sometimes I'm just so scared and so tired of pretending that's it's ok. I've been doing that since I was a little girl.
And yes, maybe it made me more experienced and mature but sometiems I want to be immature. I want to be a young girl tasting life, trying our things. It also made be broken and messy. It made me cry my eyes out for so many times.
And yes, I still think that the world that God created is unbelievably beautiful, I still sit and enjoy the sunsets and sunrises, I love the smell of grass after the storm, I love walking around the oakery, I love sitting by my beloved tree and pray inside breathing in the beauty of life, I love watching the stars sparkling in the sky and smelling fresh buns from teh bakery, I still love playing teh guitar in the evening and singing from all my heart, I love dreaming, and listening to music in bed, I still love the sound of crickets at night and the sound of rain, I love watching the rain and walking with no umbrella, and I love living life and going to the Mass on sundays and lifting my eyes to the sky and smiling beacuse of delirious happiness taht fills my heart then. I love the love that still finds some space in my heart. I love many many things... I really do.
Hold on,
Alice.
First time: wrote a blog while crying so badly and touching this topic pretty deep. It's ok.
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Kerry Lauerman
Joan Walsh
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Comments
As for you, you need help. Reach out to agencies, family and/or friends. Your mother needs a community and not to die alone. Please get help for both her and yourself.
Thank you so much. Really, that's so sweet that you named your daughter after Her and so.. right. Your comment reminded me that we only value things enough when we loose them. Maybe we should learn to do different :)
I'm with my Mom and so is my grandma, sh'es not alone, she has people, she has a health related job. There's one thing that I can sincerely advice You - use the untraditional medicine, chinese and stuff. It actually helps.
It's really heard sometimes to understand the value of things. Many things and people and circumstances. But I guess that's what by blog is all about. I write pretty much daily and I'm actually trying to be deliriously happy and I really do love myself just sometimes we have to write about things that aren't so happy and good because if we keep them inside, they will plug us and they have a tendency to eb hard to unplug :)
You are too young to do this without a lot more help. Anyone at any age would need a lot more help. Please contact the National MS Society, the Multiple Sclerosis Association of America, your local church, senior centers, perhaps an independent living center -- and let them know what your home situation is at this time.
There may be medicines or medical treatments than can help your mom live a better life. I am in no way assuming you and your mom and grandmother have not sought this information. I am just saying these things in case you have been too busy trying to make it though..
I am fortunate. I have been living with and managing MS for 25+ years. I still take care of myself, drive, cook, do creative projects, volunteer and everything else. Just looking at me you would not know I have MS except that I am careful on stairs. I have a relative who is in the same situation.
I know that if you put 12 people with MS in a room, you will hear 12 different stories because MS is different for everyone.
I guess my message is 1st, don't give up; 2nd, do everything you can to find help; and 3rd, MS isn't anything of which to be ashamed. People all over the world have medical issues. I do not think I have EVER met a "perfectly healthy person." People who don't "look sick" have diabetes, heart problems, life-threatening allergies, phobias, epilepsy, colon issues, etc, etc. Every day, people who seem as healthy as possible are killed in accidents of many kinds.
You can get information that will help you be more comfortable talking about MS so that perhaps you don't have to think about it so much. That may seem backward, but it works.
PM me if I can help you find any information. I see that kh333 offered the same support. Huge hugs for someone with a huge heart.
I have heard of at least one treatment used to help people in this situation. I am not an expert, but the idea is to sort of "re-activate" nerves that control bowel movements. I thought it was worth mentioning. A physical therapist may be able to tell you more.
Take care!
Thanks so much for all advice and interest.
Mom's pretty advanced, there's no more medical treatments.
But I must say taht one thing helps and actually helps a lot of people. It's called 'genetically correct nutrition'. The thing si that every product is chosen for evey person personally. It's really so powerful created by russian academic dr. Mezencev. the method is still not spread but now there's a lot of material comming in and my Mom's working on it too. But still not in English. But if anyone would be interested IU guess we could figure somthing out.
That's not only for people with MS, it's for all kind of people. I'm gonna write another blog about it I think.
I must also say that I'm not from US, not from Russia too though.
And no, the disease is not embarassing. It's just something that make people feel sorry. They should't be sorry for me, it's my Mom who has it.
Anyways, thank you for the advice again and for caring. God bless You. Be well :))
Thank you :)) Good luck to you and your Mom :)
I've been taking care of my mother who has PLS (primary lateral sclerosis) which is virtually like ALS, only more slowly to progress, since I was around 16.
I am 23 now, and I searched your blog as sort of an emotional desperation. This love is messy too. I once loved many of the things you included, especially Mass, but now I fear it's too late.
Please PM me if you want to talk, share things, or just need someone to relate with who is going through a similar experience. I've never spoken with one who is in my shoes, so it could be interesting and maybe even helpful...
Will
So, so deeply sorry. Keep blogging. It will do you good and the world needs to hear your journey. ((((Hugs))))