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[Ponymonroe]

I just want to say to newly dx, or not. Everybody's case of MS is different!!! Just because someone has vision problems with their first attack. It may be common, but not everyone suffers from it. As well as numbness or pain. Depression, fatigue, which isn't just mean your tired. It can mean you are so wiped out you can't really get up for very long. Or sleep for 2-3 days and still be exahausted. You can't remember what you did this morning or what we call Cog Fog. Everyone is different, just like your fingerprints or a snowflake. When I heard this explained to me it made a lot more sense. Also most people can't or don't understand what your describing and don't really understand it! Unless they hav experienced what u have. A lot of people are very skeptical about your illness, or pain that they can't see. I had a gal come over a few days ago to go over a new thing I'm trying out. And she said to me. "Well you look fine, or you don't look sick. Or you don't act sick. That's probably the #1 thing we suffering don't want to hear. So what does that mean to them? Your faking? It's all in your head? Or my classic. It's just all the drugs your on. Jeez... I spent 10 yrs. if my sick life wondering what I did wrong. Why we're close friends and family withdrawing from me? Did I say something wrong? Did I do something? I was a very outgoing owner of a nail salon in a beautiful area, with clients that were as close as family. People thought I was witty and funny and never had a problem talking with people. Which is one of the reasons I loved that job. But as time went by, more and more people would stop coming to me. Sometimes I had to rearrange early morning appts. Because I just could not get up as early. Now I had this business for well over 15 yrs. but finally I had to close for lack of clients who couldn't ot didn't want to deal with me. I was always right on time, like clockwork. How many hair stylists can you say are like that or doctors or lots of people. Then my family started on me. My grandmother didn't want to talk to me on the phone because she didn't know what to say. I told her husband. She didn't hav to say anything about my illness, but I was still me!! We were very close, I lost my mother at a pretty young age, but I was very close to my granny. I would visit her in another state every yr. or meet her somewhere, they took bus tours all over. Saw theatre with them, met them wherever for lunch or dinner, or a holiday. It wasn't until I was reading letters from people with Ms on another site I belong to, hearing my words being said by others. I didn't do anything!!! It was them!! They didn't understand it, didnt want to. We're uncomfortable around me for no reason of my own. Maybe feeling their own mortality, I don't know the answer or all of the above. But after all those yrs. of me becoming this withdrawn hermit. Did I finally understand. I think in just the last couple yrs. stars and known people are getting auto immune disease, so more people are learning more about it. But it's still a huge problem. I don't mention to anyone ever about having MS. It's crazy but true. People can be so cruel just because they can't relate to your problems. So please don't let this happen to you. It's not fair, but it just makes life easier not being judged about being very sick with a disease with no cure. And there has been 0 help for me dealing with my horrific pain in my leg. And all the other probs. I had to put it in the way back of my mind and just try not to think about it, which

Isn't easy. But it's the only way I could survive. I tried every opiate known and nothing would touch the pain so I'm still hopeful, hav met a couple friends I can relate to finally. And have two wonderful daughters that are so wonderful and supportive. Don't totally understand it but certainly try and be kind. I don't know if I would still be here if it weren't for them and now a 2 yr old grandaughter and another on the way. I promised them when we dropped them off for college, I wouldn't hurt myself. That was 2004 and I haven't done anything again since then. I take an antidepressant which I'm sure helps and try to get something to help me sleep. Because I'm not in pain, if I'm asleep. Ask me any ??? Anyone and hang in there and remember you have done nothing wrong. It's very sad but true. But since I got sick I feel the urge to help others.😊

[Jesmcd2 CommunityAmbassador]

Hi Ponymonroe I have been dealing with this for 2yrs and of course it's tossed my life in a loop!😵 And like you I did lose some friends over this. 😢

But I don't deny I have MS. 😊 I tell people right out, especially if I'm having a major cog fog moment.😊 And have found most people will be helpful, if you say it with a smile.

I'm sorry about what happened with your grandmother, I'm sure she was just scared for you maybe? 😕 And didn't know how to tell you?😕

And your so right, everyone's MS affects them differently. Which is why we come together, because, someone had been there, might be there or like me, just needs to know everything. So I can forget😄

But we are in it together 😊💕

Jes 🌠

[Ponymonroe in reply to Jesmcd2]

Thanx, nice having u on my side❣️

[greaterexp]

Ponymonroe , I'm sorry you've had such a negative reaction to your MS over the years. Serious illness does have a way of weeding out people from our lives who feel uncomfortable with it. Those who are left are real jewels.

Yes. My MS is not your MS, and yours is not mine. I guess that's true with any illness, but seems especially true with MS.

[ssdw1958 in reply to greaterexp]

This is so, you do know who is true and who isn’t at least we know and I mean every one here is truly the ones we can talk to.