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So much that I've gone thru alone...

Mar 27, 2010 - 3 comments








Its been roughly 9 mos since being officially diagnosed with MS. Its funy, looking back, I remember feeling elated that I had an answer and I wasn't crazy after all!  My husband had just left for Iraq for a year 2 weeks earlier..I spent 6 weeks last summer in WA state at an MS Center getting dx, tratment plans, PT..Seeing family..It was a whirlwind.

Then I came home. I was happy to see my furry babies and was busy getting my youngest back to school. Then, one day, for no particular reason, I woke up and fell into the deepest, darkest black hole of hopelessness.. I began not getting dressed, putting makeup on, or eating.

I literally could not stop crying. I had this sudden realization that I was permenantly ruined due to the lesion on the pons causing me to never walk right..balance was the main problem... I wouldn't golf, or hike, take walks on sandy in Vegas ever again. Not that I avidly did those things to begin with, but to have them taken off the table was devastating!

I remember being so angry and feeling worthless to everyone, that I didn't care if I lived or died. I knew I didn't have the guts to take my husband's gun and shoot myself, or overdose on pills, so I slowly began killing myself by starving. I lost 40 lbs in 3 months. I didn't want to eat, because I just didn't care anymore. I wouldn't take calls from anyone...not family, friends, my husband..After 2 weeks of solid crying, I finally called my neuro up in Seattle and asked him for something to help with depression. I was embarrassed to ask, but desperate for help.

My dad has had MS for about 30 yrs..he is now in a wheelchair and is considered Primary Progressive. He lived with this for at least 20 yrs without being physically impaired. He hunted, fished, ski'd and was very active in the outdoors. I still feel angry that he got 20 yrs without really changing his life.

I went from 1 day being absolutely fine, to the next, walking into walls, doorways, not being able to do the career I was in school to do...Hair! I somehow managed to graduate and got my license, but always tipping and swaying will not work while I am cutting someone's hair. Even going to interviews is impossible because I can't walk straight into the interview without looking drunk or on drugs.

I have to find the silver lining, but its a faint sparkle at times. I was initially soo relieved to know I didn't have a tumor or cancer..I was glad to have MS. Now....not so much. I have a great fear of my marriage falling apart due to this stress of being married to a person with an incurable disease. My husband is absolutely wonderful. He is a good dad, very family oriented. But there is always that little part of my brain that warns me that I should never be too comfortable. My husband might get tired of not getting to go places and do things all because of me.

I don't want to be a burden on anyone. I have always been very proud and never one to ask for help. I always envisioned my future with my husband as one where we travelled, walked thru castles, Disneyland, hiking..Now, so many things I just won't be able to do. It takes the fun out of going anywhere. I am a hassle to deal with.

Plus- I hate pity!  I actually stay away from friends and family because they look at me differently, they don't come over to talk to me..probably because it makes THEM uncomfortable.

This is where the anger comes in. I don't want to be different. This disease is not contagious. I just wish that I were like other MS people who don't outwardly show any problems. They are sill able to work, wear high heels..go out for drinks with their friends,,,I miss those things.

If I were to ever be single, I would have to move in with my parents again. I get no SSDI. I don't feel that anyone would want to be with me with all the baggage that comes along. Thats just my seriously negative opinions. I try to have a positive outlook on life, but occasionally, the demons get in.

Maybe tomorrow will be better...

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572651 tn?1530999357
by Lulu54, Mar 27, 2010
Dear Kristi,
Let's see if we can find a reason why you should be depressed- here's the short list I can conjure up:
* You've been dx'd with MS
*Your husband is on remote in a war zone
*You've dealt with this alone, due to your husband's absence
*You're raising your family alone
*You've been dx'd with MS
*You've been transplanted from WA to AZ
*You are in an exacerbation and your symptoms won't let up
*Did I mention your husband is in Iraq?
*Your disease has changed your life for now
*the future is a murky mess
*You have MS.
*I won't go on - you get the point, I'm sure.

If it makes you feel any better, I'm depressed too (or at least on meds for it!) and almost everyone else here is as well. Misery does love company, and you are not alone.  Depression is a very common side effect of MS - the number of MS patients with depression, I believe, is over 80%. We're living with a life altering disease that has no known cure and no predicatable course.  It's one big mystery and that breeds depression.

The disease itself is suspected to cause depression - it is most active in our brains where all those wonderful *happy* chemicals are controlled. It's quite possible that part of your brain has been hit and not supplying the necessary chemicals to keep your emotions balanced.

Depression for partners left behind while members of our armed forces are in Irag and Afghanistan is a high number also.MWF should have support groups and resources for you - please take advantage of those, too.

You know first hand how this MiSerable disease can affect your life, because of your dad's experiences.  That has to add to the impact of the emotions.  Remember that no two course of MS are the same - what you have seen your father go through is not the same as what you will experience.

Everyone in a relationship has to question whether our partner will stick by us, not knowing what is going to happen next.  That insecurity is natural and normal, and one you may want to discuss this with your partner, once he is home.  He deserves to know what you are thinking and feeling.  

So much of what you are facing has no answer - we don't have a clue about most of this, unfortunately. You just have so many more of these questions/issues hitting at one time in one cataclysmic mass and you are still standing, which is a great start.

We don't know for sure what the future holds, whether we have this MySterious disease or not.  Life really is one big ??? !

Would you consider talk therapy to go along with the chemical treatment your neuro prescribed?  We know that for many of us, just pills alone aren't enough.  It sounds like you would benefit from spending time with someone trained to listen to all your concerns.

Is your eating disorder under control now?  If not, you should also get treatment for that - the stress that  extreme dieting puts on our bodies could be harmful to our MS, but even more we know it  is definitely not good for our heart and other internal organs.  You need to be as healthy as possible to battle this disease, and it is so much harder with weakened kidneys or a broken heart.

Those demons reside in all of us - learning to control them isn't easy.  And even when we have learned to master our emotions and fears, they can still raise their ugly head.  Realize that this is all normal and take control of those demons as best as you can.  

Kristi, I can't begin to tell you how proud I am that you were able to share all of this - it is a giant first step to coping and healing emotionally.  Now please find the resources to help you on this journey.  We're here for you too.

Lots of hugs for you, but especially today,

739070 tn?1338603402
by rendean, Mar 27, 2010
Dear Kristi,

I sent you a long private message. Hang in there! We all "get " how lousy this disease is and we are always here for support!


1225331 tn?1333365769
by kelly97, Jul 29, 2010
Hi Kristi,

Thank you for the post on my journal.  It is pretty odd that we are similar. But with this disease, you never know.
I really hope that you are feeling better now (from what you wrote in your journal).  It was very brave of you to share your feelings.  Although you may not feel strong, you ARE very strong.

For me, if I start to feel down, I just remind myself of how blessed I am. I don't have cancer.  I can definitely live with this disease.  And I think of the little children that have cancer (like at St. Judes).  Plus, I think of the poor people who live in other countries, like people in Darfur who face constant fighting on their homeland and they don't have enough food or water to survive.  Looking at these things, it makes it easier for me to say, "Me? I just have MS."  It could be so much worse. This is not to lessen what we ourselves are going through.  It's just me trying to re-direct my energy.  

I see that you mentioned WA - I used to live all over WA. Well, not all over - just on the western side.


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