New here..I'm feeling sad today..

[lonestarms]

I actually learned about your site through another usergroup I am apart of and there are only a handful on that MS site. I developed optic neuritis Dec.2012,diagnosed Jan.2013 after seeing an optham,MRI and two neuros. I sometimes I feel like I am still in denial. I try to be so normal for my hubby and kiddos. Most days once I am home from work,I am in the bed all the time. I work from home more often,I am drained and my husband sometimes doesn't understand why am I always fatigued. I think it would be great to have a caregiver/support conference call or chat. Back to my story, I pretty much lost it for a few months once dx. I ache a lot especially when the weather is severely cold or hot. I find that I have isolated myself and don't like to go out much. I was in the grocer this morning and the lady behind me sneezed and didn't cover her mouth,I almost lost it..The other thing I wonder if others experience,family wants to rehab/heal you and tell you no this don't define you-my Physical Therapist told me this a few weeks ago--MS controls you,you will never have control it has a mind of its own. I had a really tough relapse earlier this year,memory issues,being able to walk,speech,it hit me hard. Some nights I just cry,because people are so ignorant about what MS is and they say things oh you cant die from MS-it's no big deal--really!! I look forward to hearing from others about their story and how they cope!

[Fed Up]

Hi lonestarms; I don't even want to hear peoples comments because, I didn't even know much about this disease....until i was dx'd.

Often, I just lower my expectations and I am not so disappointed in others. Hope you are having a better evening, though. fed

[KitOP]

Hi,
We do have a Caregiver's Chat on Wed night at 8pm EST.

Your husband can also create an MSWorld useraccount and is more than welcome to attend that chat.

I had the pleasure of meeting you in the chat room last night (I was in as kittymom00). I"m so happy that you are taking advantage of the message boards also!

This is such a great community of wonderful people. They will embrace you, help you and support you when you need it most.

Looking forward to seeing you in chat again.

[lonestarms]

Thank you..

Thanks for welcoming me and I appreciate the advice and motivation!!!

[Justsayyes]

Hello! Your post has be thinking, that's for sure! It is hard in the beginning to not wake up and have MS as your first thought, and be overwhelmed by it's affect on daily life. Plus the responsibility of making others understand about MS, yikes! I became very selective about who I told, and who I could talk freely to.

Going into denial is perfectly normal. At the point where you are at, just being diagnosed for a little over a year, I was still trying to find the best treatments for all my symptoms. It was time of trial and error, and taking it all one day at a time, which I still do...

The one thing that made a world of difference was treatment for fatigue. I've tried Amantadine, then Provigil, then Ritalin, back to Provigil. Acetyl- L -Carnatine with Alpha Lipoic Acid benefit some.

Glad you found us, I know you will find good support here!

[lonestarms]

RE:

Thank you for the encouraging words--all of you!! I need that sometimes. I am just trying to be normal but it seems like since the onset its been more difficult and sleep is a rarity unless I take sleeping pills which I am now afraid of because that increases the death rate..Geesh

Hello! Your post has be thinking, that's for sure! It is hard in the beginning to not wake up and have MS as your first thought, and be overwhelmed by it's affect on daily life. Plus the responsibility of making others understand about MS, yikes! I became very selective about who I told, and who I could talk freely to.

Going into denial is perfectly normal. At the point where you are at, just being diagnosed for a little over a year, I was still trying to find the best treatments for all my symptoms. It was time of trial and error, and taking it all one day at a time, which I still do...

The one thing that made a world of difference was treatment for fatigue. I've tried Amantadine, then Provigil, then Ritalin, back to Provigil. Acetyl- L -Carnatine with Alpha Lipoic Acid benefit some.

Glad you found us, I know you will find good support here!

[aspen]

Hi lonestarms ... So glad we were able to chat this morning . It was a pleasure!

[cleobear72]

I understand how you feel. I have had family and friends that think it is something you "get better" from, like the flu. Or the ever popular "I know someone with MS and they are doing great"! I cried every day for the first 2 months after I was diagnosed. My mother had MS so I was familiar with it, but it's different when its you. I have the great fortune to have a spouse that really gets it and has been my rock everyday. It is how I have gotten through the rough days and how I will continue to get through them. I worry less about what others perceive and concentrate more on getting through each day and taking care of myself. I can't change the ignorance of others. I can only change how I react to it. This is a great place to vent to people who really get it and can let you know you aren't alone!

[AnneLouise]

I was in denial, but only for a short time. It made too much sense of the strange things that came and went over the years.

Anger and bitterness were another story. For a long time, I could not shake the anger. I remember thinking, "when will I get over this?" Felt like it was eating me. Then one day I realized I wasn't angry anymore. Don't know when it happened, just did. Thankfully.

Don't waste your precious time trying to make others understand or letting things they say upset you. They will never understand unless it happens them. I, too, didn't know what ms was until I was diagnosed. I don't talk about it. Only to people I know really care for me. And even then, they bring it up.

There are things ms can't touch for they are the most important.

[Justsayyes]

I often take generic benedryl to help sleep and have taken different prescriptions such as Ambien, and currently take Hydroxyzine to help sleep.

If you have been prescribed something that helps you, I don't know why it would be a problem to take it if you have successfully been helped by it in the past.

[venice]

I am sorry you feel like this, but completely understand. I have been diagnosed for 10 months, but I still am angry and upset that this is my new normal.

Everyone thinks I look great, and that's lovely, but they don't see when I crash or crawl into bed and stay there for hours while outside the first warm day beckons to all but me. I have lots of pain, but I deal with it. I have severely curtailed my social activities, and feel like a loser for doing so. I haven't given a dinner party in forever, and it's well past "my turn." Not many friends know, as I haven't decided to disclose, so they probably just think I'm antisocial now or something.

All I can say is do your best to take care of you, be your fiercest advocate (especially with doctors who may not be the best at listening), and I think in time it will get easier to accept. I will say that my anger does help me sometimes -- I am constantly pushing myself, for example, to exercise, because I'll be darned if I just "accept."

[October22]

LDN

A couple people have mentioned sleeping problems so I wanted to throw this out there. Google LDN for MS. One of the benefits of taking it that I didn't expect is I get solid sleep every night.
Wishing you the best!

[tl-tr3]

sounds familiar

Sorry about your dx , & welcome .
Unfortunately for me my husband still doesn't understand .....I work 40 hrs a week , & he doesn't get why I am tired. UHHHH, I have MS , remember? And often wonders why I don't feel good.... let's see ... it could be the MS, maybe.....
I feel like getting my MRI & letting him see my brain.
To deal with well meaning friends & family - I NEVER make it a topic of conversation . They will never know how I feel , or understand.
I hope things improve for you.

[pitlover91]

Helloo welcome I'm new to this site too. I can totally understand what you feel. Especially when people I have disclosed my DX too and say well you can't die from that. Its rare when people die from complications with ms but I tell them this, would be you rather die instantly or slowly be tortured everyday?? Kind of brutal but shuts them up cause I get really irritated when people think they know what I feel and go through. I have isolated myself a lot too since my symptoms startedyears ago. Use to go out and party a lot I'm mean I'm 22 yrs old! Its hard for everyone but like I tell myself everyday. Take it one day at a time!

[jersey4ever]

Why would anyone say this...

I actually can't believe your PT would say something like "MS controls you,you will never have control it has a mind of its own." - I don't happen to think that is true at all... no we can't totally control our MS and it does have a mind of it's own - but I absolutely think there are things we can choose to do to take as much control as possible.

Take your DMD without fail - that is taking control...

Exercise to get/keep your body moving - that is taking control...

Get enough sleep - that is taking control...

Do some research on diet, exercise, supplements - don't buy into the "diet doesn't matter" crap that your neuro will tell you... if nothing else eating as healthy as possible and staying as healthy as possible can't hurt - that is taking control...

I can tell you - attitude is everything - so don't sit around and say "I have no control"... take control...