Not so new....and still scared! (long)

[mlissa67]

Hi, my name is Melissa and I have MS. I'm 44, a mother, a wife, a daughter, an aunt, and the only real intro I ever gave was about how much I hate MS and how it's changed my life....and that hasn't changed! I still hate MS and how it's changed my life.

But, I have found that this is really the only place I can come and find people who understand why I feel how I feel. I appreciate this board and all those who take time to come here, read messages, and then take it even further by answering desperate people...like me.

I was dx. March 22, 2011, I can still hardly say the words out loud without getting teary-eyed. My first symptom was vertigo, and since diagnosis it seems like I've added a host of new symptoms. Sometimes I wonder, when do I get to the remitting part?

I've had steroids nearly every month since February, I have a host of medications to treat symptoms, and I used to be that person who never took anything, now I have pills to fight fatigue, pain, pain, and more pain, sleep, nausea (probably from all the pills I take) and of course meds to hopefully fight the progression of MS. My new life is driven by medication and medical appointments, and I often wonder if all of this is really helping.

I have an MRI tomorrow to see what's going on in there. I found out yesterday yet more good news (sarcasm here); I have bilateral posterior subcapsular cataracts and macular edema in my left eye. Seems solu-medrol can cause cataracts to "grow" more quickly? And where the macular edema came from, well, I guess that's anyone's guess. Anyway, whatever the case, I just felt so deflated and defeated.

MS sucks! Balance issues, pain, bladder problems, weird tinglings and numbness, oh did I say pain, fatigue, depression, oh and again, did I mention pain? This is just a small inkling of what seems like is never ending because it's more than just those few things. I was told my MS is "aggressive." All I know is...it never seems like things remit, they just keep going on and on.

I am struggling with my faith. I cry a lot. I take loads of pills. I try to stay positive, but that's getting harder day by day. People around me try, but they don't understand because after all, they aren't the ones living it; except they are living it. They have to deal with me and deal with this; I know it's hard on them, but they do try and I'm thankful for them.

Well, I have so much more I could say, but I'll digress and spare you all the long tirade, but thank you for reading if you've gotten this far. And to all of the highly active users who really spend their time trying to help....thank you.

[rdmc]

Hey Melissa,

I know the feeling you're describing. Being overwhelmed by symptoms is an awful feeling. That on top of the uncertainty of what's going to pop up and when is unnerving.

I told my GP last week that dealing with MS was like herding cats. He said he described it as trying to keep snakes in a box. But since then I've thought of another analogy. the game they have at game arcades called Whack-a-Mole,where you use a mallet to bang one mole when it pops up, just to have another one pop up somewhere else is sort of how it is with this disease.

You're right people don't understand and to tell you the truth we can't really expect them to. You're still new to the diagnosis and thing do get easier. Plus you've been on lots of steroids and they can mess with your emotions.

What helps me is to try to find a positive thing each day and remind myself of it. Depending how you're feeling some days that's harder than others. Writing it down makes it stick more. Another strategy that helps me when I'm feeling overwhelmed is to think of something I can do for someone else and that makes me feel good. It might be as simple as bringing my hubby a cup of coffee (usually he gets his own) or making a call to someone I know is having their own struggles.

As to the pain, talk to your neuro. If your pain isn't controlled, it needs to be. I had pain from spasticity, some folks have pain that's neuropathic...but it needs to be addressed. Don't be afraid to let the neuro know how much it's affecting you. If they won't hear you, get someone to advocate for you...your husband, your GP, etc.

I hate doctors, yet I seem to collect them at an alarming rate...that drives me crazy...but I don't have much choice in that.

Best advice is to come to this board and share with those that are feeling the same struggles. Hang in there !

[hunterd]

WELCOME MELISSA!!!!!! glad you found us! as time goes by, it does get easier. just know that you will always find support and awnsers here! who better understands what you`re going thru than someone who has "been there, done that"? i look forward to seeing more of you around here! good luck.

[jojo18]

hi Melissa,
my name is Melissa too!

you are still new to all this, and it is a big pill to swallow. you need time to be able to accept it, look at it in the face, and realize that this is your life.

i was diagnosed at 13. it took me a year to truly accept it and another year to stop being depressed/afraid/angry about it.

my first symptom was double vision. i now have tremor in my left hand, fatigue, insomnia, anxity/depression, weakness in my left hip, balance issues, numbness in my finger tips... and i am in my 4th out of 5 years of college.

has MS change my life? yes! have i let it stop it? no