Finally got DX...Need some support

[Shelbygirl]

Hi folks,
I'm a 45 year old female with symptoms since age 36. I've had MS thrown at me quite a few times since 2009 but the doctors kept chalking it up to my migraines I've had since early childhood and stress. I finally had 3 nueros suggest Mayo clinic for me.
Mayo diagnosed me with MS, likely fibromyalgia (test in progress on that one) organic brain syndrome. chronic migraines and cateracts.
So thats my history.

My problem...with so many years of hearing you have ms, no wait you don't, could be, might not be....you all know the drill, I kind of went into a denial phase and convinced everyone around me it wasn't ms just migraines and arthritis. Until mayo clinic showed me an mri with enhanced active leisons. So I'm slowly coming to grips with the dx but my husband is not. He takes very good care of me and has for 6 years when I have a bad day but hasn't read or want to know about the symptoms.

He doesnt understand when I lose my balance and bounce off walls or why I'm anxious or weepy for no reason.List goes on. When I try to enlighten him on the disease he says why can't I just have my denial for a while? I told him the why is because I need the support. Even though he helps and loves me I need him to understand what my body is going through.
I'm still trying to understand it as well.
That's my story....Thanks for reading.

[tortis]

Hello and welcome. My wife has been a saint ever since this started but someone who does not have M.S. cannot really ever understand what we go through every minute of every day. Get a copy of your M.R.I. and put it in your computer and go to the areas that are enhanced and then call him in and tell him that you want to show him something. I did this to my wife and it seemed to make her understand a little better and it did tweak her interest in learning more about the MonSter. Your story could almost be mine. You must give him some time because he has to absorb all this too now that you know it really is M.S.
PEACE
Tortis

[TamaraL]

I'm so sorry your husband isn't being as supportive as he could be. Not to defend him, but he's probably going through a stage of denial similar to what you've been holding on to for such a very long time.

Maybe you can leave some information printed out somewhere where he might stumble on it and read it at his own pace, when he's ready.

Sounds like he's been taking great care of you physically, but you do need the mental/emotional support as well; and he needs to better understand what's happening to your body.

[Shelbygirl]

Thanks guys. He's seen the MRI's at mayo clinic because that was the one question he really asked about. I had MRI's before with lesions so he wanted to know what was different about this one that made them so positive on MS. He really is trying but still throws out comments like... "if you'd just excercise and eat more salad most of this will go away" or "what do you have to be so anxious and worried about you aren't even working right now".
He's great at helping me if I can't open a bottle of water, helping get up out of a chair, lifting things for me or most of the physical symptoms just not the rest.
When I asked if I could print out some information about my symptoms he said why can't you just let me be in denial for while. So I guess he needs some time. Sorry if it sounds like I'm whining about something so tedious but I want to support him as well.

[aitch10]

That's rough. I'd say give him time.

My husband was lucky in that he had plenty of time to "be in denial." When I was DX'd 10 years ago I was given steroids and, poof!, my symptoms went away. So he was able to shrug my MS off.

He's been a saint since then and has gone through my flares and unsteady decline.

Even though your symptoms have been around and MS has been on the table, your diagnosis is still new. I know it's hard because you DO need support, but give him a chance to mourn and adjust.

((hugs))

[fishead]

Shelby,

Getting an MRI diagnosis is NOT a tedious thing! It is like someone pushing you in front of a freight train! Be kind to yourself. It is nice that your hubbers knows he is in denial. Do you have someone else that can give you some support at this time?

[Shelbygirl]

I have 2 girls 23 and 24 that live out of state and call me every couple days to check on me but I don't want them to worry so I usually try to put on my phone smile for them. They grew up with my symptoms so I'm not fooling them. My youngest daughter may come for a while in August so that will be nice. People I worked with text a few times a week so I have some support group.
These comment from you all today have helped a lot. I start back on my tecfedera meds again tomorrow and I'm not looking forward to it. 😟

[fishead]

That is nice that you have gotten some texts from your former coworkers. Are you close to any of them? I know you don't want to worry your daughters, HOWEVER...I am close to my mother (always have been), and when she received a diagnosis 9 yrs ago, I WANTED TO KNOW what was happening. You may think you are fooling your daughters but I can tell you..."we know when something is wrong".

So DO talk to your daughters. You don't have to share EVERYTHING, but you CAN share some things. Believe me THEY WANT TO KNOW.

we will continue to be here for you, as many times or as long as you need us.

sending you hugs.

Namaste,
LaTish

[Shelbygirl]

Many thanks to all of you. This has helped. 👍

[Cat Mom]

Your hubby sounds like mine... a fixer, not the hammer and nails type. He's a bit old fashioned and thinks "the man" needs to be able to make things better for his family.

Don't try to make him get it, he will absorb it at his own pace. You truly have to get MS to "get MS", I'm in year 8 and still don't get it a lot of the time. It may be too frightening for your hub and especially at the beginning, filtering what's necessary to know right now does help to get to acceptance.

Please try not to get discouraged, there will be days when setbacks occur in the acceptance process, but since managing precious energy is such a huge key to living with MS, it's not worth wasting any on something that's out of your control. That energy would be better spent on healing your body and mind.

He may not be able to get it now but with a little experience he will be able to tell when you're having a bad day, even if he doesn't say it out loud. Best of luck, pls keep us updated.

Jen

[freeinhou]

MS may be just a minor issue.

I was told I had MS over 25 years ago. My wife really hasn't bought into the concept yet. Neither has my mother (women...). I tell them I'm slipping into a relapse and they say ok, but that's as far as it goes.

It's not necessarily a bad thing. We all treat it as not such a big deal and in the end it turns out to be a pain in the butt but not a big deal, so the strategy works. I might feel differently if I was PPMS or something on that level, but as long as the biggest issue between my wife and me is "who has the better and higher paying job" I'm not complaining.

Tom