Tired

[PS19]

i was diagnosed april 2010, i'm 22 now. declined all the injections.

im sick and tired of this s**t, of all of it. talking to doctors. changing my lifestyle. trying to make my life work around around this disease.

im tired of thinking about it. im tired of all these stupid problems. im tired of never having any money because of it. disgusted with the looks of pity i get. im tired of being tired, i feel like i live up in the clouds as my life passes me by.

worst part is it's never gonna go away.

*u%$ ms

[knarf180]

Please excuse my language in the below post.

Your post has been on my mind all day. I was thinking of all different ways to get through to you but nothing i say would matter since you are 22 and know best – ive been there, i know.

To put it simply your a ** for not taking the meds that would help you. If someone broke their arm you would be like *** if they didn't get a cast right? No sympathy here, you are on a forum full of people going through the same **** y/ou are. Yeah it sucks but ohh well, you just have a better story to tell then everyone else you know. Life is one big story, take it as it comes and see where it leads you. If you think of it as a ride its a lot more fun no matter what it throws at you.

A little off topic but listen to this song. It came up on pandora while i was reading your post like it was ment to be.

Say anything – do better.

Fyi, i typed this post on my phone which i dropped like 5 times while typing since my hands choose to open randomly by themselves. Thats how pissed off i am about everything you said.

[JoeS]

Wow guys, life is too short to be angry all the time about things that you can't do anything about. Instead I tend to laugh at the stupid things I have to do (for example, every "a" except the three in parenthesis, I hit CAPS <-- not that one though).

PS19, taking the Meds is like voting to me -- if you don't take em, you don't really have the right to complain about it since you haven't done all you can against it. I do know where you are coming from though. I hate this stupid disease! Just like anything else I hate, it has no right at all to dictate my life.

Also, contrary to what you might believe, if you need to unload, complain, scream, yell, here is a good place for it as there are *usually* people that are alright with it since at some point, pretty much all of us have needed to talk to someone who just gets it.

Hope things are going better for you

[flipz11]

I get it. I was diagnosed last year at 23. I watched my dads MS progress my entire life. It is a ****ty disease and no one wants it! Everyone has a story but what makes someone story even better is their fight. I am 24 years old and I still have 6 years of architecture school (my biggest symptom is not being able to control my right side.... I am right handed. You do the math but best part is... I am not going to let the MS win)

I get you have your whole life ahead of you. I always wanted my life to go my way and on my time frame and now I am finishing school way later than I expected, although I am getting married when I thought I would, I do not get to have kids until I am given the green light. It sucks. It sucks being one big freaking bruise because I take shots everyday but I would never skip one for fear that it would make me worse. You should want to make yourself better! Why would you want to let yourself get worse!? for the attention? I am not trying to be mean what so ever. I just think you really need to sit down and have a heart to heart with yourself and ask yourself 1. why you aren't taking medication... really? 2. why you don't use your resources to help you with the finances? 3. why you don't get a hold of the national ms society to find a support group or some counseling?

All of it is simple. Takes 2 min. Literally. Your doctor can help you with financial information on the shots. I take copaxone and shared solutions is amazing! Email your NMSS chapter and ask for support groups and therapists near you... I am pretty sure they even provide financial support for therapists.

Go look at the video I made in the creative center. That is how I channel my bad energy. I also write on my blog.... or go running.

I just think you really do need to do some thinking.

400,000 people in the US have MS
2.1 Million people worldwide have MS
Clearly none of us are alone in this, a lot of us choose to fight because that is about all we can do. If you don't fight.. your future self is really going to hate that you didn't and I can't say I would have sympathy for you if you didn't choose to fight.

[SNOOPY]

Hello PS19 and welcome to MSworld

I hope you come back and post, there are many here that understand.

The response from knarf180 was really unnecessary and insensitive:

To put it simply your a ** for not taking the meds that would help you.

PS19:
im sick and tired of this s**t, of all of it. talking to doctors. changing my lifestyle. trying to make my life work around around this disease.

im tired of thinking about it. im tired of all these stupid problems. im tired of never having any money because of it. disgusted with the looks of pity i get. im tired of being tired, i feel like i live up in the clouds as my life passes me by.

worst part is it's never gonna go away.

This disease really sucks doesn't PS19

I was diagnosed at the age of 24 with symtoms that go back to childhood. There were no DMD when I was diagnosed and to this day (27 years later) I have still not used a DMD.

Take care PS19

[Mynamegoeshere1]

PS19

Wow, why would someone be so rude to someone that is coming here to vent? I have vented on this forum before and many do it al of the time.

It is your decision to go on a DMD and nobody can force you. I chose to because I found out I qualified for no copay so basically my insurance paid their part and I got the medicine for free. I figured why not try it after my first and second relapse being so painful. Why someone would be rude to you regarding your decisions is beyond me. When you need someone to talk to, this place should be your safe haven to discuss whatever you want or need. Do not let a rude person ruin it for you!

I do agree that you should probably look up resources for free therapy or support aka self help groups in your area. I felt like you for awhile and went to a self help group that meets 1 time a month and it helps me so much being around a room full of people that understand. Even being one of the youngest in there, they embrace you fully and take you under their wing to help you out with resources and information. Not all self help groups listed in your area will be positive. I have heard of some near me that make you want to drive off a cliff when you leave them, but the good ones leave you smiling because you are around a lot of people just like you who understand.

I wish you so much luck and anytime you want to talk or vent, please feel free to email me privately or even add me to facebook via my yahoo address in my profile.

[knarf180]

I apologize if I sounded rude. Based on the post it sounded like a little tough love would help.

[Cat Mom]

PS19, I know it's your inherent right to choose not to take any meds but can I be so bold as to ask why you made that choice? I'm only asking because I see so many posts here from patients who would give their right arm to be on something but cannot afford it. I see many more from those who have benefitted from them, myself included. I'm just curious, not being rude. I'm sure you have valid reasons.

I have a son who's your age and I would give him a "good old Italian smack up side the head" if I knew he had such a serious illness and chose not to try to control it. That's just the mom in me coming out. Please don't be offended, vent away. We all do.

Jen

[flipz11]

I wan't trying to be rude at all towards you. This is a safe place for you to come and vent. I have been where you are. December of last year I was newly diagnosed, living in a new city, 9 hours away from my fiance for 4 months.... it was hard. I hit a low I never knew I could hit. I wouldn't even get out of bed on my days off. The one thing I never did when I was depressed was miss a shot, because I know this is my only hope of being normal.

I had a very bad series of relapses last year. Without my meds I probably wouldn't be walking right now... let alone running. The only reason I ask why you aren't on meds is because it is so easy for this disease to progress. The medication is not bad you just have to give it a chance. It is your choice yes. All I was saying about future self is... is if you don't even fight because you are too upset it is 1. really easy to stay in that mind frame your entire life 2. (and I am being really honest now) there are so many people that would kill for the medicine but they can't afford it, mine is completely paid for, so for me it is hard to see someone not even give it a chance when there are so many people out there that need it so bad.

At some point I believe we need to accept the life we have been given. We all know the low you are feeling its just a lot of us probably hit that low while doing everything we could... that's exactly why I can't understand your situation.