Friday, January 27, 2012

How I live with MS...

I've had a lot of people ask me, "How do you do it??" Well the truth is, I really don't have an explanation on how I do what I do on a day to day basis... but I get it done in the end and that's what matters. First of all, I put my MS on the back-burner when it comes to my kids. I don't want them to see mommy in pain, or have to suffer from the disease when they don't even have it. So when it comes to the kids, it's all about having a schedule with them and sticking to it. They get up at a certain time every day and go to bed at a certain time every day... that's the time that I can relax and deal with what I need to deal with.

When it comes to handling the stress of everything... that's a whole different story. We are all different in the way our lives play out, but all similar because we have MS. So when it comes to stress, I've learned I can't just "brush" it off... it need to be dealt with or else it just build up and builds up until you explode. So if there is something stressing you out, deal with it the best way you can without causing MORE stress. I have found that friendships really aren't forever since I've been diagnosed and I've learned to live with that. Was it hard, yeah... but those people don't deserve to be my friend in the long-run.

Now when it comes to peoples "advice" that they push on you that you really don't want to hear and just want to smack them... refrain from smacking them for one. Push back though... a lot of the people who push their advice on you with diets, exercise, special things to do to "cure" MS... push MS knowledge on them. Get some pamphlets from the National MS Society, or some other organization and hand them to the people who push their advice on you. Send them a press release every time there is one, GIVE THEM A TASTE OF THEIR OWN MEDICINE! I for one, don't want to live my life thinking I can cure my MS on my own. I want to be happy with my life and my MS and the best way to do that is listen to your doctors they are the only ones you should listen to when it comes to your health.

Now there is the whole cognitive dysfunction ordeal... I now carry a agenda with me and a small notebook. That way I can write something down right away if I need to. Also, anything I have scheduled that is in my agenda... also goes on my calendar on my computer and my phone. I have "alerts" set-up to alert me a day or two before the specific event and then another event 2 hours before the event. This way I can't forget. Oh and that dreaded medicine list you have to fill out and almost every doctors appointment.... Keep a updated list on you at all times! This way you can just have them make a copy of it.

It's not easy living with MS ... but I'm trying to do make easier on myself everyday. With the technology we have available today... it also makes it easier for us to be as independent as we can. When it comes to paying bills... see if you can set up "auto-pay". If this isn't an option see if there are bill reminders available. This is something you can also put in the agenda and phone to remind you about.

Don't settle for anything less than what you deserve. I for one, knew I wasn't getting the best possible care with my MS so I went and got a second opinion from an MS Specialist. Someone who is much more informative about multiple sclerosis. And I don't find myself updating my neurologist on new MS research... it's the other way around. It's also nice to keep a journal of your daily symptoms... that way you don't have to "remember" them for your Doctor's appointments!

The best thing I have done since being diagnosed is getting involved. I don't sit around and watch TV or do anything that lets me think of the pain and struggle I go through everyday. Kind of like, out of sight out of mind. Keep busy! Volunteer with an MS organization or just be your own advocate about MS. Get some hobbies and keep up with them. If you can't do hobbies that you used to, find a new one. Don't let MS keep you from living... just live your life in a different manner.

I know it's hard to stay positive... and I'm not positive all the time, trust me. We all have our moments where we wish we had a different life with a different body. That's not something we can change though. It's okay to have a bad day... it's okay to be mad and it's definitely okay to vent. I know it's easier to put a smile on your face and say "I'm fine"... but the people who love you and the people who matter will know the truth.

The pain doesn't go away... the damage that has been done cannot be reversed... but how you deal with the pain and damage is what makes up who you are with your MS. If people have something negative to say about you because you have MS... forget them, what do they know? People don't know what we go through until they go through it themselves. Are there people worse off than me, yeah.... but the fact is I'm still dealing with things that I don't want to. Everyone also needs to remember that MS is a disease with no cure, that "normally" doesn't shorten the life span. 

I am learning and dealing with the fact that my life will never be what it once was. It hurts... and it's going to hurt for a while. But I don't want to be an unhappy person all the time. That's why I'm doing what I do. The more you connect with others that know what it's like to live with MS.... the better you will feel that you are not alone. I know that I can't hide my MS, so I show it loud and proud that I am a strong fighter in a battle with Multiple Sclerosis.

Thank you to everyone who has been reading my blog and leaving me comments. It means so much to know that while I'm documenting my feelings and journey, that I'm also helping others along the way.



  1. I Lost all my friends, i don't care about them. were both strong for living how we do, coping with MS. i walk with a crutch and a crace to hold my dead foot up. i keep myself happy with new friends who accept me and how i live. my emotions go from dring to smiling, i don't complain to others but they do show me they care. my old friends are gone, makes me sad. Take care because i do care. Colleen

  2. I found your blog by chance and I think it's a great idea! I am Italian and I also like you lived with her, and I also try to be positive (though not always succeed). Keep it up ... a hug!!!

  3. sometimes i think if i hear "but, you look so good ..." one more time, i'm going to hit someone. i just wish these people could feel as crappy as i do for a day and that would shut them the heck up.

    hang in there ...