What do you have to do?

[JerryD]

I am just about as fed up with feeling sick as I can be ! I am tired of feeling like a rat in a trap. Riggle and squirm around as much as I do, and I can't seem to come to terms with MS. It just isn't about to cut me a break. I see doctor after doctor and come out feeling no better than when I went in. I have gotten one piece of advice that seems to help me. But very little. The psycologist toldx me to try to 'mentally' accept that there is no 'beating' the disease. I guess that is good advice. But I can't get myself to accept this. I feel that if I don't fight, the disease wins.
I have read all of the slogans and they're nonsense to me. MS does have me and I have MS, BAD. MS sucks and there is nothing that I see that can change that. I will not stop believing that MS will be overcome, some day. Those are my thoughts of the day. Good luck to everyone

[pennstater]

Jerrry,

In my thoughts, I feel I can still believe that one day, MS will be beaten and a cure(s) found. But I have to accept that it is not right now. Acceptance doesn't mean that I am throwing it in, just trying to focus on what I can control and adapting where needed.

If you had a friend or family member that had heart disease and had an attack, while surgeries might help, it doesn't cure the damge done. That person has to control diet and exercise to have the best life they can. Even then, no guarantees. But people live with hope that some day, heart disease can be cured or reversed.

I know MS is different in that it affects so much more of our body and mind, but there are parallels. We all can only control so much and when we focus on what we can't, anger, sadness, and frustration really take over, at least for me they do.

It seems like you have to find a way to acceptance of this uninvited and unwanted party crasher. But acceptance just means you know you have it and are doing all you can to fight it. It may have the upper hand now, but it may not always. We are the underdogs, and I always root for the underdog (unless they play a favorite team of mine). But in fighting*it, we can only do so much. If I fight and expect more than reasonable with current medical knowledge, it won't help me. But if I pick my battles and keep to the ones I have some, even the smallest chance of victory, then I will win. Some days, it is being able to accomplish my goals for the day.

Hope you can find some peace with this.

[Windwalker]

Maybe there is no "beating" MS...but think about what that means. What does beating MS mean to you? I know what it means to me...and it does not involve some cure or reparation of damage that has occurred. Don't look to Doctors to make you feel better. They are probably doing all they can by putting you on a DMD and, hopefully, giving good lifestyle advice.

Your right about one thing. If you give up the disease will take you. When your like us, teetering on the edge of total disability, you must fight. Every day the battle rages on. I hate feeling sick too. I think I'm starting to accept that I'm not who I was. I am sick!

Loose the negativity...channel it into some productive PT.
Everyday is a battle...every day.

[palmtree]

Jerry,

I really love your straightforward approach to all of this. One of the posts you made to a guy who was planning his financial security was fabulous, 'bend down, put your head between your legs and kiss your behind goodbye'.

This may not make sense to some but I think you should HATE MS. Hate it and hate it and hate it until there is nothing left to do but salvage what you still have in life. You are very clear headed. You have a great way of expressing the disaster this disease is.

Can you write a book? A book about day to day life with MS? A book that doesn't sugar coat anything describing every gory detail? If you have read anything by Dave Eggers you might get an inspiration. He wrote one book called, "A Heartbreaking Work of a Staggering Genius" which describes in gruesome detail the trials of his mother dying of cancer. And another called, "The Circle" in which the father of the main character has MS. He is fighting insurance companies to cover his Copaxone and soiling his white terry cloth bathrobe with a bowel accident.

You can't make all the bad things about MS go away but you can do something with your gifts that let
the world know what this is really like. And maybe get rich in the meantime because it's a best seller.

Edited by moderator in compliance with Guideline #4
    

[heliotrope]

A family member made a fantastic point recently. I was fighting so hard to pretend the MS wasn't happening that I actually made myself sicker (overdoing it, anyone?). They suggested that I start focusing on getting people to accept me with MS - whatever that meant.

Funny how fast some of the comments and issues disappeared when they started hearing the real story...

[Mamabug]

Accepting my MS seems to be my only option. It's not going away, its symptoms aren't going away, and it's not getting better but it's progressing. That's just my life. Everybody has their stuff. Some people have experienced the death of a child, or a divorce, or domestic violence or poverty or a different illness. That might be their stuff. MS is my stuff. Not thrilled about it, but ... oh well. I better accept it, because burying my head in the sand won't make it better.

[Thinkimjob]

The whole thing sucks. Two (?) years ago I was assured by an MS specialist Lemstrada was the drug for me.

Slight problem, turns out there's an increased risk of a brain haemorrhage with this drug, only found this out last week.
I've had one of those, still got a dainty little aneurysm, so, uh, yeah, no, thanks but no thanks.

It drives me bloody silly. Why are all the best drugs potential killers? Why offer hope and drag it out for years, when she (MS woman) had to know I could not possibly take this stuff?

I'm quite sure they'll find a cure and a repair mechanism one day - smallpox, antibiotics, leprosy done and dusted - but I don't think I'll be around to see it.