Out of Sight, Out of Mind?

[iwillcometoyou]

I've been Dx for what will be 2 years in Nov. and been on Copaxone for a year and a half. I'm still struggling with talking about it. I feel like I've closed myself off a bit but it seems like talking about it makes it so much more real.

I don't tell people my symptoms I just keep going as I am. But the few times I have told people my symptoms they seem to blow them off or with the fatigue in praticular say I know I'm sooo tired too. I'm thinking NO you don't get it! I know that there is really nothing the can do about it so I try not to get upset becuase really they probably just don't know what to say.

I haven't really posted on the board but I do read it. I think that just goes again with the feeling of if I talk about it in anyway it's just to real. Is this normal? I'm just not sure. I hate that when I go to the Dr. and have to say I have MS it makes me sick. Just typing that made my anxious.

I just want to be okay with it I just don't know how to get there. So far the only coping I've done is out of sight out of mind besides crying for almost the whole first year.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[mjan]

I want to commend you for coming on the board and expressing how you are feeling. I hoped it helped to vent a bit on here, did it?

First of all, your reaction and coping is not right nor wrong. Our feelings are not right nor wrong either. So feel free to express yourself here anytime please.

Also, I am a firm believer we need to educate folks if and when we can. Does it hurt when they seem to dismiss or disregard, yet often try to compete with our symptoms? That depends..Some are not reachable..teachable, but many have NO idea what MS is, what it does and how variable we all are even within the same symptoms. If we cannot fully understand those variances amongst our fellow MS sufferers, how can others understand?

Personally, unless I need to explain why I cannot do something, I pay no attention and simply care for ME>>LOL

So again, thanks for sharing. Know that MS can often cause many of us to grieve the "could've beens and should've beens."

Grief stages: shock, denial, depression (anger) bargaining till finally if reached at all=acceptance. You can go up and down these stages and stay stuck on some for a long time.

I still advocate for myself and others who suffer mostly from cognitive signs of MS. Even the docs either never ask, but admit, they do not know what to do except to use a neuro-psych evaluation which to me STILL can be rather limiting in explaining what is going on.

So know that whatever you are feeling right now is okay.. for you. Do not allow anyone to dismiss or disregard your reality.. as you know it.

Hugs to you, as many as you can take my dear~

Jan

[justacowgirl]

iwillcometoyou

I was dx'd 3 years ago. It is still very hard to believe that I have MS. When I write the words MS I too have a hard time not making that dx colour everything else in my life.

However; I also am an advocate for talking about MS because people just don't understand. People won't ever get it unless they have spoken to someone who lives with it. But it did take me awhile to get used to it all and get used to talking about it.

Out of sight out of mind is not something that I think is good. Procrastination just gives you anxiety. Eventually you have to deal with the issue. It's always in the back of your mind.

But, take it at your own pace.

I think you own attitude effects how people respond to you. So when you are ready to talk about it you will. Don't expect so much out of yourself and other people.

I wish you so much happiness.

j