What Should I Say?

by Anonymous

My wife was diagnosed with MS by doctors a short time ago. She has several of the symptoms of MS - the most common being fatigue, tremors, and some loss of her cognitive skills.

I am not the type of person who needs a lot of inspiration and support to get through something. My wife on the other hand is. She needs words from me to inspire her daily.

The problem is, I don't know what to say. I feel helpless not being able to "fix" what's going on. What do I say to her? What can I do to reassure her that things will work out and be OK?

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Jul 13, 2011
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Say You'll Be There
by: Anonymous

First of all, if you haven't already, you both need to find a doctor you are comfortable with. One that you can work with and who will listen to you. He or she should be a doctor who you will not talk over you. One who will make you feel like you and your wife feel like you are part of the "team".

Not one who is always "telling" you what to do. Make suggestions, of course. But ultimately, you and especially your wife should make the final decision. Read so that you can both be proactive. Know as much as you can about what MS is (and isn't).

Secondly, it's very natural, when faced with a lifetime of living with a disease like MS, to be afraid of "what will happen". We know people who have MS, that continue to work, run, play, etc., just like they did before they were diagnosed. They only need to modify the way they manage their lives according to the symptoms they have.

Then we also know some who are much worse off, who get progressively worse over time - but still have a positive outlook on life. They learned to take each day as it comes and then accept the rest of it. They don't let MS take away who they are.

So, by all means, search for a doctor - allopathic or naturopathic - who will listen to you and help you both figure out what method of treatment is the best one for your wife. It should be something you are both comfortable with. Don't feel locked into a treatment or therapy that you feel is making her worse or not helping.

As for your concern about what to say to your wife. I know exactly how you feel because I've been there as well. The feeling of being helpless and wishing you could "fix" everything is so real for us as spouses and caregivers.

Our "job" as well-spouses seems never ending when it comes to inspiration and support. When we are truly there for our loved one, though, that makes all the difference.

This ends part 1.

Jul 13, 2011
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I'll Be There - Part 2
by: Anonymous

Here's the rest of the answer to your question.

It may not seem like much when she is going through a particular episode, but as long as you are there - that really does make a difference. It can be a difficult thing to see and live with - a loved one hurting and progressively getting worse - but when you love them, and show them that love by staying with them and going through the bad times, she will be able to thrive.

Sometimes just holding her - letting her know that she is the love of your life - that you married her because you love her no matter what happens - that she is beautiful - and that you will always be there for her - that you can make it through this or anything that comes, together will help.

Believe it or not, she may feel like you might not want to stay. She may even feel like she's a burden to you or that you didn't get into your marriage only to be saddled with an "invalid". She may even try to give you a "way out" of the relationship.

You may not be able to always succeed in letting her know otherwise and frankly you may even feel like it's hopeless trying to get her to understand. Sometimes it's just hard to get through to her depending on how she's feeling at the moment.

The thing about that is, to realize that it is "just a moment". One moment when her defenses are down and she's really hurting emotionally or physically.

When the dust has settled and the moment has passed, she will know that you are there for her and always will be, no matter what happens. Love her, pamper her, hug her, make her laugh, hold her, everyday and you both will make it through.

Cir and I have been making it for the past 30 years and we've had our ups and downs. Through it all our love and commitment to each other is constant. Sometimes it seems lopsided with one bearing more than the other, but we know in the end we'll always be together.

Hope this helps,
Akrista

Jul 16, 2011
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Same Issue
by: Anonymous

WOW, I have the same issues; tremors, some cognitive issues also, and my husband just hugs me... I don't think he knows what to say anymore either...

He told me the other day that while I was lying in the bed he was thinking "why did this have to happen to me" and we just got married last year, then I got sick months after... But he always hugs me and kisses me while I'm lying in the bed because of fatigue...

You can also just confirm to her that everything will be okay, and pray..

Jan 31, 2012
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misunderstood
by: nancy

I usually talk to those I know about my MS. I am not medicated. They say I should try using something at least, but I am scared. Is it necessary? Just trying this alone is out of character.

Feb 01, 2012
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It's Up To You
by: Akrista

Hi Nancy,

It's really up to you what kind of treatment you decide to use, if any. You need to feel comfortable with whatever that treatment is. If you aren't, then you'll probably stressed out about it, or you'll find the first excuse to discontinue it.

One way to figure out if you want to try something is to talk to or read about others experiences with a particular medication or treatment. One way to do that is by going to a support group and asking questions.

If that's hard, try this. Call the company of the treatment you are considering. See if they have peer counselors or people who have used the treatment before and who are willing to talk to you about their experiences with it.

Another possibility, is to try looking up the treatment on You Tube. Search for videos about the treatments you'd like to know about and watch them. Watch several. You should be able to get an overview of the pros and cons. You can even ask the person questions in the comment section.

Don't be afraid to try a few of the alternative treatments, as well. I know it's hard to know if something is really effective, but if you don't try, you'll never know. Most times, the alternatives are a little less invasive, as well.

In the end, it's all up to you. Try to feel comfortable with the decision you make. And you may eventually decide to try something. But always know if after you've given it what you feel is a fair trial, and it doesn't work for you, you can always stop.

Cir tried all four of the CRAB (Copaxone, Rebif, Avonex, Betaseron) treatments. Ultimately, he started out with Avonex and ended up with Copaxone. He even stopped using Copaxone more than once, but always came back. He felt that it was the only one that really made a difference in the long run.

For others, only the Avonex worked for them. But always know that it's your choice. Think of everyone else's choices as suggestions for you to consider - even the doctors. Think about them and learn about them, then make an informed decision.

It's up to you.

Feb 01, 2012
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Worried
by: nancy

Is the divorce rate higher than usual with people who have MS?

Apr 15, 2012
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Divorce Rate for MSers
by: Akrista

Hi Nancy,

I am so sorry that I am just answering your question. I will go into it a little more, but the short answer - according to statistics, is no.

The divorce rate for MSers is about the same as or slightly lower than the general public. I was a little surprised to find this out, but it's true.

I'm not sure about the reasons for this - possibly for a few different reasons. My husband has expressed to me that he doesn't want to be a burden and doesn't blame me if I wanted to leave. I wouldn't leave him because I love him for who he is, not because of what he has. What if it was me?

Others may stay in a relationship because they're afraid of being alone. Or they may feel obligated to stay and care for their spouse. The love may not be there anymore in these situations, but out of fear or because of a sense of duty, they stay in a less than fulfilling relationship.

I will add a page about this and post a link here. Thanks for not being afraid to ask.

Nov 15, 2012
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UUUGGHHH! MASKED SYMPTOMS?
by: Anonymous

Question: UUUGGHHH! MASKED SYMPTOMS?
WHAT IN THE WORLD HAVE I GOTTEN MYSELF INTO, THIS IS CRAZY.. AND, I AM SERIOUS WHEN I SAY CRAZY. LET ME EXPLAIN HOW THIS CAME TO BE, FOR 15 YEARS I ABUSED A DRUG - MUSCLE RELAXER, SOMA - AND FROM TIME TO TIME I WOULD FALL. I BLAMED IT ON THE SOMA. I BLAMED ALL THE LIL’ TELL-TELL SIGNS THAT I HAD IT, UNTIL THIS PAST FEB.

I DETOXED MYSELF.. NO MORE SOMA... MONTHS WENT ON. I WAS FEELING BETTER. IN FACT, PRETTY GOOD FOR A CHANGE.. SOBER. ANYWHO.., COULD THE DRUG HAVE MASKED MY SYMPTOMS ALL THOSE YEARS? AND AFTER DETOX, THE SYMPTOMS CAME ON SLOW, THEN FASTER AND MORE INTENSE. COULD I BE IN THE MIDDLE TO LATER STAGES?

PLEASE SOME ONE OUT THERE HELP ME.

Dec 29, 2014
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That’s a Possibility
by: Akrista

Answer to Masked Symptoms
Hi Anon,
First I want to apologize sincerely for not answering this question sooner. 2 years is a long time to wait for an answer to such an impassioned plea.

And now for the answer I would have given then, and for anyone in a similar situation now. Unfortunately, that could definitely be what happened. When you are under the influence of any type of drug, you’re more likely to ignore or just not be aware of what you are really feeling. You can’t recognize subtle or even blatant changes in your body.

Even things like falling. People fall, of course. But when you are falling as a result of taking a drug, specifically a muscle relaxant, that’s one thing. You kind of expect it. To be off balance is all part of the program.

Without the drug in your system, falling is not a normal thing, so you’re more likely to investigate - ask yourself questions and then eventually go to a doctor if it keeps happening.

A little story that relates. We once knew a guy who drank alcohol all through college. He got, in his words, "wasted" on a regular basis. When he finally got his act together and stopped, his MS symptoms came on with a vengeance.

He joked that maybe he should have kept on drinking. Of course, we know that wouldn’t have changed things and possibly, could have made things worse by abusing his body. You will never really know for sure. I don’t know if there are any studies about this sort of thing or not.

You are not crazy, and you can’t go back in the past, so you will never know if things would have been different had you not abused the Soma. You can only deal with life as it is now. And possibly spread the word to others so they can know what happened to you.

Take care, and I apologize for taking so long to answer your question. Hopefully you’ve been able to deal with it in the last 2 years.
Akrista

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