new to MS/Had rough weekend
 

ok,so I am newly dx with this stupid disease,and am wondering what is normal?! I guess that "normal"no longer applies.I will go days or weeks feeling great,then like this weekend,I was really tingly,which kinda scared me,cuz it had been gone for a while.I know that I kinda freaked myself out,I got a little bummed,had a good cry,talked about it with my mom and boyfriend,then was fine.

And I am very optimistic,and not depressed or anything.But do get bummed occasionally.It doesn't last more that a few hours tops.but my problem this weekend was that I feel sometimes"trapped"inside my body.Does that make sense?Like I can't get away from it(ms) so I'm wondering,how do you guys deal with this kind of stuff? I guess I was having what couuld be called a bad"ms" day... am probably rambling.Thanks guys!

I know the feeling well.....being trapped inside myself. :rolleyes: Sometimes it's hard to get out of my own way. But, the longer I've had to deal with MS (since 2005) the easier it gets to accept. At least for me it does. Everyone has different circumstances to deal with in life. I think I've come to terms with the fact that this is my "normal". That takes a long time to do. Some folks never do. Some days it's easier to accept than others. My advice is to just take it a day at a time. It sounds like you have a good support system at home. That makes a huge difference. :)

A bad MS day, not like a bad hair day.:eek: Or isn't it? Let's see, you don't look good, you don't feel well, you don't want to see anyone or have anyone see you and you just want to pull the covers up over your head and go back to sleep. Hmmmmmmmmmmm, maybe they are a little bit the same, at least psychologically.:confused:

We all understand Sessa and whenever you need to ramble or grumble, this is the place.

Feel better soon..:hug:

Hi Sessa

I think it actually takes a long time to reach that point of acceptance and recognise that you can't control this disease.

I too am optimistic (after nearly 11 years and still walking and doing lots of the things I could before), but lots doesn't mean everything and I have down days too. And. while I am doing all of these things, there is the realisation that things could change at any time.

That is the worst part of MS - you have no control, and it will do what it wants to do, when it wants to do it.

It truly is a roller coaster, and you can't always get off. Take heart and remember tht you are exactly where you are supposed to be in the universe. (I paraphased that from someones profile - and I love it).

Just make sure that you listen to your body and don't stress or overwork yourself too much.

Regards

Lyn

Hi, Sessa

I agree with what the others have said. I was diagnosed about 7 years ago, and I guess I've come to terms with it as much as anybody comes to terms with a chronic illness that seems to thrive on catching you off guard!

I haven't had any new symptoms for a long time. The same old ones will wax and wane, or disappear altogether for a while. Then, if I'm stressed, or ill, or for no reason at all, BAM!

Then I do what you do: freak myself out, get a little bummed, have a good cry, talk with somebody (in "real" life or on here) and then I'm good for a while.

I've had symptoms for probably 10-12 years. I still walk (though use a cane when out and about, and a rollator when I go for walks), I still drive, I still can thread a needle, and MOST of my symptoms wouldn't be noticed by someone who doesn't know me really well.

My dad had MS for nearly 40 years, can't remember exactly. When he died a few weeks before his 80th birthday (of emphysema), he was still getting up and down stairs under his own steam, still reading, still following the stock market, and again, only people who knew him really well even realized he had MS.

I realize that this stinkin' disease can turn on a dime, but I try to focus on the better outcomes while I (try to) prepare myself for the worst. It's tricky ground, but Sessa, you've come to a good place here at NeuroTalk. We're all in this together!! :grouphug:

Don't beat yourself up. Its all part of the mourning process. Its hard dealing with the loss of who we used to be.
My mother had scleroderma which has a death sentence attached to it. She told me she was sitting in a doctors office and saw a 'cartoon' on the wall showing a man in boat desperately trying to bail out the water in his sinking boat. He is looking up to heaven exclaiming "God, why me!" In the next caption God booms back, "Why not you".
She said that stupid little cartoon made her really think and come to grips with the future she had to face.
Mom's attitude turned on a dime and luckily she beat the odds and lived FAR more years than she was suppose to. On a bad day, I think of the 'cartoon' story she told me so many years ago. It has actually helped me to pick myself up and get through the bad days. :hug:

How funny! Not what you are going through but I was going to post a thread this morning about something similar. I was dx in 2006 and have experienced this pattern over and over. I go through times where I feel really good and almost normal and then BAM! I get slammed down with symptoms. That slam can throw me for a loop. I get frustrated and angry and sad and all sorts of things. Last week, I had a pretty good week. This week is not starting out that way and this morning I just was having a small pity party feeling the same things you are describing - trapped in my own body and no where to run to.

So, yes, I think most of go through this. Hang in there! You're not alone.:hug::hug:

what you're feeling is normal for having MS.
i also remember dealing with lots of emotions. you feel like you've lost control.
and i like being in control.

i don't think about the future and the what ifs. it may never happen and it takes too much energy. i just try to live in the here and now and take 1 day at a time. it's ok to grieve for anything you've lost. just getting the diagnosis is a blow.

and coming here to talk to us is very helpful. i'm glad you have family support too. :hug:

I've begun to visualize MS as similar to being on a sailboat...at times it's a wonderful, smooth ride...then choppy waters and storms come, followed by more smooth sailing.

When I was first dxd, I was relieved to get an answer. Then, when the first shipment of Copaxone arrived, I opened the box, saw the syringes, and sobbed. It became all too real.

I go through times such as you are...I have a boo hoo session, feel sorry for myself, then dust myself off and get up and fight on...

It helps to have the support of family and places like this to get hugs...

And as for the picture described, I always ask myself, why not me? I am no more important, and thus not immune to the slings and arrows of life, than anyone else on this planet.
Every human has a story...I think of the hungry children around the world, the war zones, so much misery...this is not heaven...it's Earth...very imperfect...

DebbieD, thank you for your post. For some reason, it made me feel better/stronger.:)

Thank you Debbie

As I read your post I was feeling sorry for myself that walking has become a painful chore, not an automatic reaction. Your comment cast a whole new light on things.

Really???? I just need to quit bitching and remember, as always, that there are others who have life so much worse than me.

Cheers

Lyn

I follow the Debbie school as well. on days when its sometimes to hard to even phathom, I try to take myself away from myself and realize that while I may be in pain, I woke in a home that I own. While I may be nauseous, I have food to eat, while many in the USA dont have any food in their homes. im blind, but I have a truck load of folks headed at me to teach me how. I can still see shadows and have been taught how to use a program that I speak to and it types things for me.

I do hope you are able to find some sunshine in your own life. I want so badly to stay stuck in the dark on some days and just stomp my feet, and scream why me Lord! why must I carry this?! what did I do to deserve such treatment?! Why not tag a drug addict, or a hooker, or a murderer, or an adulterer, WHY ME! and then, I throw off the covers, and find reasons to keep moving forward.

Then I come here, and I get my dose of daily cheerleading.

Debbie - You are right and I often do the same thing. Don't get me wrong, I still have my pity parties but I think of all the others who are in a similar situation or worse. And, I think of them and how they deal with their daily struggles and they become an inspiration to me to just keep going. A friend of mine gave me a little framed picture of fish. It's called Phish Philosophy. She gave it to me as a reminder to "just keep swimming" (Finding Nemo). There is a lot of truth in it and I keep the picture on the counter in my bathroom. This way I see it every day and am reminded to keep going regardless and that I have a wonderful friend in this life.

In my post, I hope no one felt I am suggesting that their journey/pain/suffering is invalid...

In fact, I have asked God many times, "Why me?" When my brother in law was attempting to rape me, I screamed, "God, why me?"
When our friends' daughter was killed by a drunk driver, I shook my fist in the air at God, screaming, "Why them, God?" So many times...

I am imperfect, and I used to feel so guilty about asking this of God. I understand now, as I journey with this stupid disease, that we all have crosses to bear, and my Creator understands my humanness and imperfection when I question what I encounter during my journey.

My dear sister, who passed recently, always cried and asked why she had to suffer from her various ailments...why her?
She never seemed to take responsibility for the decisions she made in her life to bring her to her present circumstances. She smoked, was very obese, cheated the system, and chose mates who were selfish and abusive. Many of the things she suffered from were from poor choices.

There are things that come along in our lives that are not a result of choices we have made...it's just life.
I remember watching Sesame Street with the kids when Mr. Hooper had died (well, the actor had died, so the show had to deal with it). Big Bird kept going around, asking everyone why Mr. Hooper died. Everyone had their explanation...then, at the end of the episode, Luis finally said to Big Bird, "Because...just because."

And that is what I remind myself, even as I cry from the pain and disability I deal with occasionally. Because...just because...

As a long time follower of your advice Debbie I dont think anyone thought you were advocating a "suck it up and deal with it" attitude. I saw it as a we are dealt what we are dealt, and we can choose to sit in the dark or we can come on out to the light.

I know when I am IN pain, scared, feeling alone, upset and angry at this whole disease process I am much more likely to not take advice or stories in the spirit in which they are intended. I am more likely to grab whatever you said and bite back at you, cause...I DONT FEEL GOOD! and I want it to stop now please! Two days later when I have more wind back in my sails and some rest under my belt, I am much more likely to return and say "oh!" When IN crisis...nope, not gonna happen, and I will go silent and be upset.

its my opinion that we have all gone thru so much. from badly behaving family (have you MET my sister?) to diseases that make no sense (Granny is choking and her MD cant tell her why) to being housebound and not having a friend or neighbor close by to help us find pee pads for our doggies (remember sal's pal?) up to attack after attack, and finally leading to my blind behind bumping into walls and trying to figure out how and why should I get out of bed today. Can I cook? no! I will burn the house down! Can I drive? no! I will wreck the car. Can I vacuum so my house is clean? well..yeah, but I am going to bang up everything in the house. I have to count on everyone right now to do stuff I should be doing for myself. Just because I show up with a good attitude, doesnt mean I always had one. You should have seen the MASSIVE break down I had about this. kicking and screaming like a 5 year old.

I hope all are feeling better. :grouphug: