Holding on

[BeneathTheLies]

First off, this forum makes me want to cry and at the same time jump up and down in excitement.

I want to cry because i need to, i was diagnosed more than a month ago but i have yet to let the emotions go. I feel as if i have to keep a smile on my face so that my fiance and my family won't see how absolutely terrified i am.

I want to jump up and down because i now know that there are people out there that can relate to what i'm going through and help me with guidance and in this case venting.

I feel like my entire life has been picked up and twisted upside down and then thrown right back down. (maybe stomped on too) Four months ago i was working 6 days a week, 60 hours or more and finalizing some summer plans. Now summer is almost over and i've done barely anything. I could barely walk for two months. I don't know what to think anymore. It's like as soon as i start my meds then it's all real. Not that losing feeling in my leg makes it not real it's just... i don't even know how to explain it.

I feel alone and scared. I've been to the dr's more in the last four months than i have in the last four years. I hate that this is happening to me and i read alot of post saying that god picks the strongest people for this to happen to but i don't feel strong. Everyday i feel a little weaker. Not only physically but mentally. My mood is all over the place and i'm irritable about everything and i feel like i have no place to go but here. I hate to ramble on forever, especially in a pity like manner but i've held my chin up since the beginning and it gets harder everyday.

The people i work with know about the MS. (it's kind of hard not to tell a whole whopping 8 people when you go to the dr's every other week it seems) The are really supportive for the most part but they don't understand. Some days it's so hard to keep going but if i stop i'm afraid i'll just give up. I don't know maybe i'm just depressed. Either way, i just needed to get this off my chest before i go crazy with it. Thanks to anyone that reads or reply's.

Heather

[heliotrope]

Please call your local MS Society. They have programs set up for people newly diagnosed and trust me, they can be a huge help. It will give you someone to talk to near you.

Don't blame yourself too much for being upset. It does get more comfortable with time, but you've had a huge shock. Give yourself the time you need...

And please, continue to vent!

[katvar]

BeneathTheLies, Having MS isn't about being weak or strong. It isn't about who you are as a person, if you let MS become your identity - it will take over.

Sometimes you have to give yourself a "melt down break". Being strong on behalf of others is exhausting - A good cry can let a lot of that out. I find that the shower is a good place for me to cry because I am alone to think and the tears get washed away so no one has to know that I am struggling a bit.

Your comment about your life being picked up and twisted and stomped on made me think of Dorothy in the Wizard of Oz.

I have a love/hate relationship with this forum. It helps to have this support network and to know that there are people who understand what we are going though. It also makes me aware of how difficult it can be to find face to face support and understanding.

Each day is different - tomorrow it may be easier.

[jojo18]

cry/scream/kick and break things... you need to let it out before you explode.

i would contact your local chapter and see about a support group.

the sooner you start you meds tho...the better.

this is not about being strong or weak. its about being human.

so, what are going to do about it?

[Kimba22]

BeneathTheLies,

Sorry you are here with us , but also glad you found us ! You'll soon discover you are not alone in how you feel. Allow yourself a good cry sometimes. A dx of MS hits everyone differently, and there is a "grieving" process most of us go through. Some take longer than others to get to acceptance.

Depression is common in MS ... from the disease itself and/ or from the Disease Modifyings Medications (aka DMDs). Don't hesitate to reach out for help if you have trouble with depression. It's not your fault if you need help, just the darn disease. There really are meds that can help!

As far as others understanding ... well, they really can't unless they have MS and have experienced the same symptoms. You chose the perfect name, how most of us often feel around other people. MS is also an individualized disease, none of us are exactly alike. This just adds to the frustration.

Have you started on one of the DMDs (Copaxone, Rebif, Avonex, Betaseron, Extavia or Gilenya)? My suggestion is to start on one ... you are still young and should do everything you can to slow down relapses and disease progression. You should also try to control stress in your life (lots of MSers benefit from yoga), excercise (the pool is great if you have heat related symptoms), and eat healthy.

Ask, ask, ask your questions ... we are a very opinionated bunch with lots of information we can share with you. Come here to vent your frustrations anytime ... we really do understand. Try as they might, non-MSers will never truly understand.

Learn as much as you can about MS and all the different treatments and drugs. It will help you feel empowered about your treatment, and know what to say or ask your neuro about at your next appt. Most of us keep a simple log with dates, symptoms, duration, and questions that pop up so we have the info for our next neuro visit. I just write things down in one spiral notebook. Then I glance over it before my next appt. and write down a small list so I know what to talk to him about & don't forget. My neuro expects me to pull out my list and pen everytime .

But give yourself time, it can be overwhelming. Baby steps ... forward. Keep holding on, there are still many sunny days ahead for you!

Best wishes,

[BeneathTheLies]

Thank you everyone. It's been a very trying time in my life and at times i wonder if i'll make it, but i keep holding on and thinking that maybe tomorrow will be better.

Kimba- i just started Copaxone a little over a week ago. It's not my favorite thing in the world but if it's a chance at a relatively normal life, i'll keep putting myself through it.

Jojo and Katvar- i have yet to really get in contact with my local chapter of the MS society. I know i will eventually but right now i'm not ready to. I'm scared of what i will see and learn because as they say sometimes ignorance is bliss. Eventually i will have to come to terms with everything but right now isn't it.

If anything good has come out of this whole mess, i'm learning to appreciate the little things. I was able to go to my friends annual party and i made it through the whole thing without much more than pain. In my world that means i could walk around and dance a little to the live bands. That's much more than i could do a month ago.

My biggest fear with this disease is that something will threaten my mobility and my mind forever. I've had memory loss for the last couple of years and what lead to my dx was numbness and tingling from my waist down. I read on this forum how much everyone has overcome and i worry that i won't be able to overcome everything thrown my way. It's a scary feeling. Sorry this is so long.

Thanks,
Heather

[twisterred]

Heather,

If I could, I'd reach through this screen and give you a big hug!

I'm so sorry that you've had your world turned upside down by MS.
WHen I was diagnosed years ago, I was 24 and like you, was working many, many hours, never sick and suddenly, the brakes seemed to be put on me.
What a shocker MS was! From what I read, you're in shock too. That's normal, IMO. Afterall, who can hear he or she has MS and NOT be upset?!

You are much braver and smarter than I was. It took me over two years before I could handle contacting a support group.
What I found was an amazing, supportive group who helped me, accepted me and made me feel that someone out in the world understood me.

Grief is normal and healthy.
All of your concerns, questions, fears and thoughts are normal.
Life with MS is not one that anyone ever plans, life with MS has shown me there can be the lowest of lows and very high, normal times with this disease.

You and your DR are awesome for getting started with Copaxone, IMO.
It's a medication that after 6-9 months, helped settle down my body.

I never imagined that I'd find an OK place with MS. When I walk my dog, read a book or cook dinner I sometimes remember many years ago when I was painfully numb, wall walking, in shock and scared to death.

Heather, welcome. I hope I've helped you see that although MS does suck, life and joy continue.