Emotions & Handling thereof?

[PixXy]

I am looking for advice as to what emotions you went through with MS. Specifically people who have been diagnosed a few years ago, what are the biggest issues you've personally had? How did you deal with it? What made it better or worse, what could other people do to help you through it?

[Seasha]

I think you'll find that all of us have varying degrees of emotional issues to deal with from time to time, regardless of having MS or any other condition.

How about you, PixXy? Do you live with MS? What have been your experiences?

[cosake]

I think everyone deals with it differently depending on their personalities.

For me, it was immediate jaw-dropping shock (as I knew nothing about MS at the time) at the suggestion of my diagnosis. I had not been having on-going problems attributed to MS, but got ON, then went on to diagnosis. I think people who have struggled for years with problems to get a diagnosis will have a different emotional path. I think it will also depend on the severity of symptoms, and how disabling those symptoms are to people.

After the shock, there was worry over the testing involved to confirm diagnosis, how to tell my children and friends, etc. I was matter of fact when telling everyone and found that I didn't really grieve.

I do allow myself a pity party every once in awhile when something will really get to me, but other than that I keep going as best I can.

I am a control freak, and although I can't control my MS, I can control my knowledge of it, so I immersed myself in learning as much as I could about MS and treatments, etc. so that I can feel in control a little bit.

My husband is more attentive these days and lends a helping hand more often than he really needs to. But, he feels good to help me out, so I let him sometimes even when I don't need it. My friends and family (including my boys) are understanding when I can't commit to an activity or event.

I have been fortunate so far.

[tellnhelen]

As a child I volunteered for the annual MS Childrens Xmas party...that was in the 60's. You can't imagine my emotions when I was dxed in the 90's.

It literally took five years to come to grips with thoughts of being crippled. Every time I reached or tryed to learn about MS, people started giving me wheelchairs or other assistive devices. This would send me into a dark place that I had to fight in order to survive.

Those days were so dark that I medicated myself frequently. Now, some thirty (or so) years later life with MS has forced me to go way beyond what I thought wouild happen yto me in the beginning. I am STILL trying to live my best life.

One of my emotional challenges is telling or seeing old friends that knew me when (I was all that and a bag of chips! It is difficult to greet them from a wheelchair or tell them on facebook that this has happened to me. So I just do it..and then hope they don't turn away. It hurts me when I thought we were friends etc.

So how do you handle that? Well, Try your tears, try to remember the good times, and get back to your life. Make it the best you can

[Canary54]

I've been diagnosed for almost 8 years. I told my PCP that I suspected MS before I even saw a neurologist. I used to work with a physician with MS and our symptoms were similar.

After the confirming MRI, I remember been so relieved that I didn't have a brain tumor. MS is preferable (for me) to cancer.

I still have regrets about what I am no longer able to do.....take long relaxing walks, cut the grass in 90 degree heat, take a bath.........but I try to focus on what I can still do...what MS has not taken away from me.

When it's pity party time.........I find an activity I can still do and get busy. Children and grandchildren are great diversions!

[abeautifullife]

There's a great essay by Joan Didion on this topic. I think it helped me more than any other text I've read about MS since diagnosis. I don't think I'm allowed to post links here, but search "Joan Didion MS" and you should find it. It's called "After Diagnosis."

Keep in mind that Didion was diagnosed in the 60s, so her medical prognosis is much different than a patient today. Despite being diagnosed quite awhile ago (with no access to DMDs), she's still doing very well and has had/still has a fantastic career.

[Mamabug]

I was relieved to finally have a dx, and be able to treat it. I'd been basically un-dx for almost two years (with two "probable" dx, which then were ruled out).

~ Faith

[justacowgirl]

Dx was the biggest shock of my life. I was completely uninformed about MS and was immediately afraid I would never walk again.

Three years later I deal with the symptoms daily..but I don't feel sorry for myself. Instead I do what I can and let the rest go. I still run a business and volunteer...it gets me up in the morning. I am not the same physical person but I am the same person.

Emotions? absolutely. But it is all about attitude. I thank the Lord daily for this great gift has given me...the ability to be humble and to realize that He is in control. Although I miss the physical person I was I don't care if I am healed or not. I just enjoy the days. And I really do enjoy them.

It is refreshing to speak to people who suffer from the same afflictions.

I find that if I work on my attitude daily I am just as happy as I ever was.



j

[Windwalker]

It's really pretty simple...

MS is a disease that produces ever increasing amounts of frustration and anger while destroying your ability to properly handle these emotions and filter reactions.

With MS, you are losing your ability to do the things you love....a little at a time. This is usually coupled with pain, discomfort and fatigue...generating the anger/frustration.
This disease...of the CNS after all, seems to break down our normal ability to deal with stress and removes filters for giving a more measured reactions.

Generally, the more you are affected by MS, the more you will have issues regarding emotions and handling emotions. I see it in myself and in others...it's part of the disease.

[Katje]

When I was dx over 20 years ago, I didn't even flinch when my Doctor told me. I just got up and said it could had been worse and laughed. I went back to work and kept it a secret all these years. I have not told anyone but family, not even my best friend.

[palmtree]

Where do I begin? For me, the diagnosis was devastating because I knew what this disease does. But those first six months were filled with flowers and cards and I felt cared for by many people.

Once I started the DMDS I was planning to carry on with my life and face it head on. Then a terrible flare came that put me in such a state of exhaustion that I've been in bed since. Sure, I try. I get up and do things I have to do while my body is screaming, "let me rest!"

As the symptoms have progressed, so has my sense that others just don't get it. I can't believe the
cruel things that have been said to me. I have serious allergies so going to a church or support group has been impossible. The isolation is so painful.

Also, knowing that my feelings and reactions are altered but not being able to protect myself from the harsh judgement of 'the world' adds to the frustration.

That's enough for now. Thank you for bringing up the topic.