where did I go?

[empirerecs]

this is pure venting but I'm really frustrated and hurt. I was dx in 2008 at the same time I quit drinking and was getting divorced. It was pretty rough. I thought I had friends but they disappeared, more because I was sober, but also because I couldn't go out as much as before. I made a few more after becoming sober but they faded out pretty quickly. Then I had to move because the ex was stalking me, I was fired and filed bankruptcy. I needed a new place to start over and had the blessings from all my doctors, therapist included.

But, besides the friends, my family dropped out too. I have a very small family to begin with - one sister, a stepdad and dad and stepmom. I don't know the cousins on my dad's side very well and were never close to my stepdad's family. My sisters' kids are teens and we all live in different states.

I do have a great BF, he's supportive and kind. He has a disability too and it's worse than mine and he's also older. His family is very kind to me but we have only been together almost 2 years. He moved with me because he's "free" to go anywhere and his family all live in different states as well.

I emailed a few remaining long distance friends and my sister a couple of days ago because I was scared and really feeling some kind of mortality, even though I'm far from that - as far as anyone who may get in a car accident - so it shouldn't be an issue. But I'm going through klonipin withdrawal and a bad reaction to zanaflex. I have major depression (decades) and OCD so I have become fixated on who will be around when it gets really, really bad. I haven't heard from anyone.

So where did I go? am I on another planet? just because I moved doesn't mean I'm gone and I can't talk to anyone anymore. I don't understand this at all and I'm feeling very hurt. I know at the time of dx and all the other crap I distanced myself because I didn't know up from down but I still kept in touch and when I got a handle on it I did see some of them before I moved. One of my friends from the past has MS as well, I knew her before my dx but I don't hear from her either.

I'm 45 and making a contingency plan for my care when it gets bad because at this rate I'll be alone.

Thank you for listening to my vent.

[jazzgirl]

bumping you up, empire.

Today, my "people tolerance" is low, so I don't think my response would be all that helpful.

[maximumlite]

empirerecs,
I know how you feel, the only ones interested in me and my MS is my kids, my wife she has not asked me a single question about what it feels like, what she can do to help me, just like all my friends and extended family.

All my friends I had no longer call or email me, even my hunting buddies, and I just happen to live in city limits where hunting is still allowed without having to go at least 30 miles to hunt.

I am the same person I was years ago, yet I feel like they think they are going to catch something from me.

Yes it hurts and I think all is not lost because of sites like this I have met new friends, friends that understand what I'm going through and will be there for me weather I'm up or down, I've met others from out of state in person and I think these are friendships that will be a life time, and it seems like the new friends will be a true lifetime friendship, so all is not lost and you will make new friendships and the bond will probally be stronger than you will ever be able to imagine

[DMG]

In a lot of your circumstances, I could have written your post. I'm sorry for what your going through.....I can relate.

David

[valeriem2220]

This does sadden me. I have been absolutely obsessed with getting a diagnosis, no matter what it may be, for the last 7 months. I know I have more than likely bored many people with my constant rants, raves and updates during this time.
I have had an extremely caring and understanding support system in my friends and family, especially my ex husband whom I consider to be my best friend.
Hopefully now that I have that diagnosis I can finally calm down about it and give them all a break from it.
The ones I have told so far have been supportive in conversation such as, "If you need anything, I am here" "If you need me, just call"...I haven't had to actually take any of them up on their offers, so I have yet to see if any will really be here for me. My ex husband is always here for me so I know I have that constant and it is a wonderful feeling.
I wish you all the best and hope you find the support you need. Some people just don't know how to handle it when someone they love is ill. I know I never know what to say and am uncomfortable with the idea that I may say something stupid, which seems to happen often lately...lol

Keep your head up and know you always have the people of this board. They are amazing.

[Hawkgirl]

empirerecs, I know just how you feel! I found out I had MS at a time of great upheaval in my life. I got dx'd, then moved to LA and started a new job. I had no friends in LA and my old friends who had promised we were lifelong friends and would always be in touch had now disappeared, never to be seen again. Did they dump me because I moved away? Because they moved away? Because I had an incurable disease and they just didn't want to deal with that? I'll never know.

Then I got married and NO ONE who claimed to be my friend attended my wedding. My sister was my bridesmaid. My "girlfriends" were not to be found, so no bridal shower or bachelorette party for me.

My constant is my DH. If you think your relationship with your boyfriend is solid, first off: get married. It is much harder to break up once you're actually legally married. You and your boyfriend will be the rock you build your life on. You guys support and understand each other, and your health issues, and what you can and can't do.

As for other aspects of your life, I can tell you that I don't know myself anymore. In fact, with the birth of Facebook, I *have* connected with old friends, but I don't want to see them anymore. I don't want to see people who knew me before I had MS, because I have changed so much. I may look similar on the outside, but I feel different. My hubby and kids understand when I suddenly jump up and run for the bathroom or have to go change pants. They understand when I'm talkative and happy and seem great but suddenly sit down and seem to drop into "sleep mode" like a computer. I'm just so different from the pre-MS me.

I don't want to come off like a Bible-thumper, but you could try going to church to make some friends and get some support. This has been a good comfort for me. Or you could see if the MS Society has a support group in your area. Or you could just hang out here!

I guess my point is (Good Lord, did I really have a point in all that blather?), I feel like I'm a different person now, from who I was before I had MS. Different lifestyle, different home, different friends. So you're not alone in thinking you've changed. It's a shame when your "friends" dump you for whatever reason, but maybe a blessing too because you'll know now who your real friends are!

P.S. I really admire you for planning ahead. That seems like a good idea.

[empirerecs]

thank you everyone for your words and support. It is comforting in a freakish way to know that I'm going through the same thing as others. I wouldn't wish these circumstances on anyone.

Bless you all and "hanging" out here does help - if it's not scaring the pants off me!

Hawkgirl - weddings are ironic and can be so superficial, my work friends were my only bridesmaids out of 4 who showed up. My best friend from 7th grade didn't show up to be my maid of honor for either wedding and my sis ended up in the hospital with her son for my second wedding (I don't fault her for that at all). I don't see anyone from either wedding any more. If I could do a wedding all over again it would be the two of us and a couple of witnesses. I wish we could get married but it would mess up the disability. I'm really happy you have a wonderful family.

I hope you all feel better too.

[jumpinjiminy]

Empire, there are days I could have written your post too, even without a dx. You've described it perfectly, it's like being invisible. There are times I feel invisible in my own home with family around.

There were times in the beginning of this continually unfolding drama that I felt like I could starve, die of thirst, or have a medical crisis and nobody in my own household would know it for hours.

My extended family members rarely connect outside their own small spheres, but my friends are still there, which is why I chose them to begin with. Unfortunately, most of them are also scattered across the country.

Facebook helps me keep in touch, internet forums as well. On the days I sorely need the physical presence of a friend, I invite someone to meet me somewhere like a coffee shop or have them over for dinner.