My soul hurts

[Rhoda Horse]

I got my diagnosis two months ago.... I'm happy to finally have a answer for my symptoms.
I am so afraid but no one knows that. I have been walk my friends and family through this diagnosis and am being strong for them...
I cry late at night when no one is around. I don't want the same fear I have for myself to be carried by anyone else around me.
I feel very alone

[aspen]

First, Rhoda, I'm so sorry about your dx. Secondly, the best thing I've done in this process is see a counselor. Please consider this. I never thought I'd EVER have the need for counselling ... but I look forward to my time with her each and every time.

I understand not talking with friends and family, at least for a while ... but you will still need to process this.

[22cyclist]

Rhoda: Aspen is so right. A counselor is a great idea early on. They can help you through the grieving process of having a degenerative disease. Sometimes friends and family don't understand right away anyway. However as Aspen said eventually you have to let them in to your feelings. You would want them to do the same. A counselor is just a neutral party who can focus on you alone. I hope it is something that you are able to do.

If not, come on here and vent out your frustrations and things you are sad and depressed about. You will find that many people who can relate to you.

When you are feeling up to it, take a look at our chat rooms too.

Take care,
We are all thinking of you
Lisa
Moderation Team

[Nabbosa]

Thirding the idea

Rhoda,

One thing I realized when I was diagnosed - not only do I have to be strong enough to disclose to someone, not only do I have to gauge if they are strong enough to hear it, but I also have to be strong enough to take their reaction. This is a problem we all have. Some people freak out, some will tell you about an aunt who blah blah blah, some will tell you about some wacky therapy that is a known cure (Known to whom? Would we really all not know if there were a definitive cure?). Truthfully, I stopped disclosing - which also means I can't really vent to friends because some don't know. And those who do know - they just don't understand.

Look on the NMSS website to see if there are support groups in your area - I think they call them something else, because there isn't a therapist involved. It's just a place for MSers to meet in person. Groups in different areas have different kinds of activities. One I went to when first diagnosed was like a bunch of ladies getting together to eat pizza and drink soda without having to say no to the kids! But they all knew what the fears and daily challenges could be with MS.

And I was also not someone who ever thought she'd go to a therapist, but I was due to another serious injury - a facial injury that made me feel bad about myself - when I was diagnosed. So the diagnosis ended up being a big part of the therapy. What was great: she was required to listen to me without rolling her eyes or showing boredom, or saying any of the stuff we are always worried about (If you just try harder ...., Are you really sick ... etc.). Also, she was not allowed (by law!) to leak any information outside the session unless she felt I was a danger to myself or others. So I could say things about being afraid and it wouldn't accidentally get back to people who shouldn't know (I was in grad school, and a lot of my friends were also colleagues). And if one of my friends or relatives reacted to something in a hurtful or weird way - I could tell the therapist without it getting back, too!

Another plus - it is an hour that is devoted to you and only you. If you are like most women, you probably don't have enough of that in your life for many reasons.

Last point: in the first year after diagnosis is probably one of the hardest times, just because you don't know what to expect the "new normal" to be. Once you get used to the diagnosis, you'll trust your body again, and have a better idea of how your life will/can proceed.

I know that I am very fortunate in the disease course so far, but I've been able to take up two new sports since diagnosis 6 years ago (almost exactly - we started with test just before Thanksgiving). First off, I still can do these things; second, I might never have acted on the desire to do them if MS weren't making me think about the importance of the present. I'm not saying I like the disease, nor would I call it a blessing, but it has made me think about priorities and time management in a way I hadn't before - to my benefit as a person.

Warmest thoughts - you'll get through it!

[Lisabelle]

I think the replies you have received are great, so I am not sure how much I can add other than, it helps to know you're not alone.
It is an adjustment to be sure. Stay committed to caring for yourself. Do your exercises and whatever your MD and PT prescribes. Everyone's outcome is different. Fight to keep what you have physically. It is best for you and your family will feel better if they see you doing well. Don't stop caring for yourself while taking care of everyone else. I made that mistake.
Allow yourself to cry. There is nothing wrong with that. It is a normal reaction. I haven't seen a counselor but I believe in therapy if you're having a really hard time. I found that the slow progression of disease enabled me to adjust over time. There is a small blessing in that.
Above all, remember you are not alone and other MS patients can relate to what you are experiencing and we share many of the same frustrations. You can live with MS. I have had it for 8 years now. Sending a big hug your way. ��
Lisa

[Irina Maria]

I got my diagnosis two months ago.... I'm happy to finally have a answer for my symptoms.
I am so afraid but no one knows that. I have been walk my friends and family through this diagnosis and am being strong for them...
I cry late at night when no one is around. I don't want the same fear I have for myself to be carried by anyone else around me.
I feel very alone

DO NOT "FEEL (so) ALONE", PLEASE
Maybe you wish to talk to me? I can listen*

All my love,
Irina-Maria

[Fed Up]

I got my diagnosis two months ago.... I'm happy to finally have a answer for my symptoms.
I am so afraid but no one knows that. I have been walk my friends and family through this diagnosis and am being strong for them...
I cry late at night when no one is around. I don't want the same fear I have for myself to be carried by anyone else around me.
I feel very alone

Sometimes mine hurts too. Then I come here and feel relieved or post what is bugging me. The help and support is absolutely priceless.

You have lots of company and are not crying alone!
fed

[tommylee]

My soul hurts.
That is a good way to put it. Beautifully said.
Funny name too. (Rhoda Horse) I like it.

Like everybody here is telling you...Seek professional help or read some books or come here, whatever helps you learn to deal with it.

You should find a wealth of experience here from many people that have been living with MS for years.

I hope you feel welcome here.
You have summed up the feeling of having MS for me in three words.
I am almost 20 years into this journey and have learned to deal with my MS pretty well but it does feel like my soul is slowly being ripped from my body.
(I think I have gotten used to it? still hurts quite a bit...I try not to think about it too much.)

Sorry you had to join this club. But welcome.

[Goldfinch]

Rhoda,

I sure don't want to sound flippant here but when I got diagnosed with rrms I felt very much like you. It took me a while to find this website and other resources and that helped me a lot.

My imagination made things seem much worse than my experience thus far has been, knock on wood. For me, it's been so far, so good. Maybe your imagination is running a little wild, too. I spent a lot of time worrying about what might happen. My husband said to me, "Worry is a waste of the imagination." He was right. Planning, ah, now planning ahead is different. One should always have a plan A, plan B, etc. But worry? Worry just brings you down.

Try not to let it get you down and remember that bad news is relative. No matter how bad you think you've got it, somebody else is coping with worse. Try not to let it get you down how? Stay busy. Research this stupid disease all you can and educate yourself in preparation for being your own best advocate. Remember the activities you enjoy and schedule a little time each day or throughout the week to enjoy yourself. Try to maintain a regular routine to calm your nerves, because routine takes less energy than improv.

God luck. Visit here. We like to talk with you. Good luck.

[Rhoda Horse]

Thank you for your replies. I'm a little overwhelmed that people replied at all.
I was having a moment of vulnerability and knowing that people actually are reading and responding to this I am feeling hesitance in continuing.... But I know that I need to stay on this site. The love here feels amazing and refreshing.
Now I have a question.
When you all found out you had the ms did everyone around you start thinking they had ms too?

[Thinkimjob]

The great thing about these message boards is no one knows who are you are, and you can speak freely and honestly.

Now for your question - yes, indeed they did, and they still do. I think it's a pretty normal response, when people hear bad news. You'll also get to hear about everyone's mother's aunt's friend who has MS, and is either a) perfectly fine or b) completely stuffed.

[tommylee]

When you all found out you had the ms did everyone around you start thinking they had ms too?

Not everybody...but a few people did.
It seemed strange to me. Why would anybody even want to think about having such a curse?

[Fed Up]

no

I have a very sick neighbor that has similar symptoms but, different and not unrelated health issues. fed

[MSwhileOverseas]

Hi Rhoda Horse this site and the people here have been a huge source of support and information for me. With regards to your first post, I can totally relate. My soul hurts, I am so scared but not so much for me, I am scared for my husband and kids. They don't deserve this.

I am amazed at how many people think they have MS. From my brother, to the nurse in the hospital, to people I barely know, they all want me to diagnose them or validate their symptoms. I have learned to just listen to them, say I don't know and talk to you doctor.

[Cat Mom]

Hi Rhoda, this Message Board is a great source of compassion, understanding, empathy.... etc. please don't hesitate to reach out for support. You will probably discover that your posts (both asking for, and giving support) brings great comfort to many others. Many of us lurk for a wee while before posting, that's the beauty of anonymity here.

If you're not comfortable asking stuff here, many of us have our emails in our profiles so you can reach out with bit more privacy.

Congrats on the birth of your son! Just to answer your question, no... nobody around me thinks they have MS, thank God!

Hang in there, it really does get easier to live with, this Board has changed my MS life.

Jen