I got sick with bad symptoms like you describe pretty much immediately. that was when I was 22. I live with it, but not happily. The only thing that keeps me going is staying busy. I volunteer here on DS (counseling young people with family or gender identity/sexuality issues), and I make art, novels, songs, etc. Anything I can do while lying down or propped up in bed. If I am busy helping people online and making things, by the end of the day I'm too exhausted to worry about tomorrow.
HUGS
hang in there--MS is the most lonely disease...

Beemergirl, I can only sympathize with you for the pain that you must be going through with the uncertainty of your future. Many big hugs go out to you and the thoughts for you to keep up your strength.

Your story sounds similar to mine although I don't have an official diagnosis yet. Do you have any hobbies you enjoy that don't involve walking or standing? Picking up an old hobby or getting a new one (it's never to late) can make life a little more bearable. Maybe there is some way to volunteer your time for a good cause. Doing nice things for others is a good self-esteem boost and might help you feel less lonely. Even just going to the public library and sitting there (when I lived close and could still walk okay) used to be therapeutic for me. I hope you find something to do that makes you smile.
((hugs)) Crystal

Hi Beemergirl. It's me, SharonMom. I am SOOO sorry for all that you are going through physically at this time. The best advice I can give you is to look up Christian Churches. You can probably find one who will have a minister who will give you pastoral counseling and who will pray with you over the phone. And, alot of Christian churches have buses that they use to give elderly and disabled people rides to church and back home. I think that you that it would help you ALOT to be around Christian people who would want to be your friend. And praying and singing Bible songs to God is VERY spiritually uplifting. Also a popular activity for Christians is to go out to breakfast after church on Sundays----Not to an expensive place, just to someplace like Denny's, which they have WONDERFUL pancakes! I know. I LOVE their pancakes! So please pick up the phone, let's see if you can be laughing and joking with new friends this Sunday while you are enjoying pancakes!

I am so sorry for what you are going through. I try to stay positive for my kids. They need me. I feel terrible every time my son sees me not well. Maybe focusing on your children will help? Best of luck to you and hang in there. Hugs.

I come from a town where the ms rate is 7x higher than the rest of the US. I've seen many patterns of this bs sickness.

There have been people who had ms all their lives and never shown a symptom, only to be dx'd through autopsy. There are also people with rapid progressive cases who never recuperated. I fall in between those two. Always will, and it's the only thing I'm certain of with this. It's a crap shoot for sure other than that. Of course it sounds scary at first, but in over going on 10 years in June of this year, it's actually been liberating. It's directly because I don't know what the future brings that I'm not too concerned. There's no way to know if I'll be bad off, but there's also no way to know if I will be relatively stable. There's two sides to the coin.

It's a trade off not knowing. I wouldn't want to. I'd sacrifice knowing that I'm gonna be fine, as opposed to peering at the dark side of that coin. Either way I intend to live it up, because ms or not, I will eventually be dead and incapable of doing so. I just think of all the things that had to go right for me to be breathing at this very moment, it's staggering.

Bee, not all of us with MS are still free to run or play or work or do anything close to normal. I can't type but use a speech program that types for me. I can't walk. Bathing wears me out. Even preparing myself for a visit from friends is too much and sometimes I have to cancel.

I like you, worry about my future. It is the only thing that keeps me trying. I don't want to end up in a nursing home. That is what keeps me working at it. There are days when I want to throw the towel in. I want to give up.

It becomes especially hard when friends bring the news of how well another MSer is doing. While I am happy for them it makes me sad I wasn't one of the lucky ones. I think your emotions are normal considering your body is betraying you.

I am sorry to hear that you are doing so badly.I have been really lucky and been able to keep up gardening and playing tennis, although sometimes I can't feel my arms or my legs. I collapsed once, but it was a very warm day in a dome.

I keep happy by my animals and my garden. I do have a wonderful supportive husband. My cat just died, and it was hard. I will admit, I do take antidepressants, but I took them before I was diagnosed.

I also had optic neuritis, but it has almost reversed itself. I was completely colour blind in that eye, but now I can see quite well.

So part of my hope is that I will stay in remission. I also had the MRI's for the liberation procedure done. I only had one blocked vein the one where the air bag hit me in the neck. So I keep exercising, and my physio thinks that all the stretching on the tennis serves might be keeping the vein open.

I don't know what to tell you to help. I do not have any faith, but I have been checking out about being a Christian. My sister is a Christian, and it seems to have helped and changed her. I also did CBT and ACTS, which are both psychological counseling. In the end, I was happy with neither, because they did not address the fact that I had MS. Really.

Anyway, I hope we can be friends.

I just want to add that life is a prayer. It doesn't take a building.

My two cents

I stay positive by running through a mental list of all the things that I have to be thankful for in my life, such as having a roof over my head, food on the table, a warm coat, and most of all having my girlfriend in my life and feeling loved. I look forward to my girlfriend coming home from work each day and spending time with her each evening, just eating dinner together and then sitting side by side while we're both on our computers or watching a movie together. Having a loving significant other is a real comfort. Have you thought about trying to meet someone special? Maybe even someone else with MS? Perhaps online dating or attending an MS support group in person might be a good place to start if you're interested. I met my girlfriend through an online dating site. We've now been together for 2 1/2 years and expect to get married within the next 2 years. Even just forming some close friendships could help a lot with the loneliness and despair. I wish you the best and hope you're feeling better soon.

Sorry you are struggling with so much so soon. I hope you are able to do some sort of physio or exercise to help keep the strength you have & to improve too. Any exercise will help & it makes you feel better too.

for the shower, get a seat to sit on & a hand held shower adaption to use. In a lot of showers you can put an outside plastic chair in it if you dont have a stool, they are not expensive to get & ebay often has them too. It makes a huge difference by sitting when showering. We used to only have 1 shower & had an extra hand held shower put which we added to it with just a knob to change it to whichever head we wanted to use (so others could stand & I could sit showering).

Try not to focus on the "what if's" & enjoy each day & what you can or do. Find hobby or interest group that you enjoy & join it. Remember you dont have to tell everyone you meet you have ms too, you can say anything you feel comfortable with including one I use on a lot of people I dont know, have an autoimmune disease which causes weakness & fatigue. Then judge from there if I want to tell them more or not. It can be very frustrating when have to use a scooter & it is noticeable but dont let it worry you - if someone asks why do I use a scooter? I often just say - it gives me freedom to get around & do more without being tired, always got a seat too. )or similar) & that way not saying too much at first too.
Take care of yourself & talk to your local ms society too, they cant help you unless you talk to them too.
Hugs

Hey Beemer, sorry to hear you having such a hard time. It does sound hard all the stuff your going through. Trust me I know it's extremely hard to stay postive when your going through all that. When I get really low I call a family memeber or a friend I also paint and draw. Well I hope you find something thing that makes you happy 8).

Thanks everybody. I love this group....such amazing support.....thank you. I really like the idea of counting my blessings everyday....instead of focusing on the negative and worrying about the future.....easier said then done...but I will give it a go. Thanks again.

I am so sorry for all the changes. I have many changes in the past 2-3 years too. It is so hard to stay positive. I had a tough day yesterday. Walking was so hard. Both legs barely picked up and were dragging. I teach full time PE. I am losing my mobility and I love my job. The fear of what will be around the corner was stealing my joy. I had a mom here at school tell me a really neat thing. She said it not to dismiss how hard it is to let go of things. She said to me (she is christian and I am too) God is just prepping you for what he has next for you. The comfort from those around me yesterday was my Joy. Joy is as active a choice as love is to me. I look for it despite the troubles. I do fall apart and have pity parties, but most of the time I try to see joy through the pain. Since i have actively been looking for it, I have been happier.

Sorry you feel awful chica. Not sure it will help but I do believe in 'If you're going through hell, keep going' - Winston Churchill Hope you feel better very soon honey X X X X