This Is MS Multiple Sclerosis Knowledge & Support Community

Hello Everyone.

I'm new to this board so thanks for having me, let's chat like old friends, I promise I"m super fun! But I do need some advice right now so please read on. Five years ago, I was DX with RRMS. I was 28 years old and barely knew what MS stood for and my incompetent PCP wasn't much help either. Thankfully, Al Gore invented the internet and I was able to research MS. I was terrified with what I read, as my head spun and tears rolled down my face I cursed Al Gore and his "internet invention" but a bit satisfied that I knew more about MS than my PCP, bonus! Throughout these five years, I truly felt as if I've mastered my DX (all that comes with it) like losing a friend and going through the [*]five stages of loss and grief[*]. Denial, Anger, Bargaining, Depression, and Acceptance, almost seamlessly at times. I was no longer the girl who had a panic attack watching the copoxone video-I finally became aware, understood and accepted MS was my new friend whether I liked her or not. My declaration became"there IS nothing to understand about MS...it's not complicated, it just is, I have it, I can't change it, I deal with it". However, those words seem so distant now and I can't reach them, instead, I find myself writing here perhaps only someone with MS can only understand someone with MS. A few years ago I felt like superwoman. I was a manager of 125 employees, night school, my home, etc..life stuff we all do, I was non stop. I could always push myself no matter how physically or mentally exhausted I was, just push a little more you know? It was my choice. But what do you when that choice is no longer up to you? Your body and mind have made the choice for you and you must comply...not because you want to but because it's the only way.How does someone who has the personality of a "go getter" and just accept they can't do the small things like IE: go grocery shopping because they are too tired, yet feels so guilty asking her husband because he’s worked all day-isnt he tired?(fyi...he is so supportive-this bothers me which adds more guilt on me) too tired or too hot to drive somewhere, or clean etc. How!!! I'm really struggling with this and need some advice on it. How do you accept what you are not able to once do?? How did you get there, what did you do? Any advice would be great...thanks everyone!

Hi yeah,

I've only been in this since 2010 so I'm sure I will have to modify how I handle the limitations. But for now, I only accept the limitations for the short term. "I'm like this today. But I know I can make myself better if I just keep trying." So, I keep trying new things. Sometimes it works and I love every minute of catch up work and play I do and I chase down all those experiences that would be on my bucket list if I were rigid enough to actually write one down. Sometimes it fails and I am satisfied that I've knocked another possibility for me off the list. No matter what, I am always working at something. It's just different things depending upon how I feel. I guess it also helps to re access the value of what you still do. For me, I can't imagine anything I could do that is more valuable than loving and caring for the beings in my life. It'll be a long time before ms can take that away from me. That's totally sappy, but it's true.

You'll find your own way. Sometimes it just seems harder.

I read a wonderful interview with Clint Eastwood recently about being older. He recounted the story about discussing old age with a 95 year old who inspired him with his liveliness. When he has asked the older man for advice about staying young the answer was "don't let the old man in". How we deal with MS should be a bit like that. Some of it is attitude and some is lifestyle. Attitude includes how you react to other people and how they react to you. Sometimes you have to put other people back in their place as they need to be loved and can see your problem as some sort of outlet for their need to share. They can end up reinforcing problems by setting up a loop of co-dependency. They need you to be dependent on them. Watch out for that. Be as normal as you can and make sure other people are as well.
On lifestyle, don't always blame MS. Even it's proved to be related look at the symptom that troubles you (fatigue, stiffness, vagueness, bowel issues, etc) and say "how would I treat this if it was a problem in isolation?" You'll be amazed how many things you can fix by doing that. There are notes in this site that can give some ideas. Ignore the ones that can't help and look to the conversations that might. I have ideas as do others but don't look for a magic bullet. There isn't one. Be a little bit proud of your problem. Don't run from it. Acknowledge it but do whatever you can as often as you can. Tell other people, don't keep it a secret but don't let them feel guilty about it either. It's not their fault and you can't make them sick so just be as normal as you can.

Above all. Be yourself not a victim of MS.

Regards

You have it wrong. You are a superhero NOW!