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  • HappyAliveDay
    I'm 33. I have just been released from the hospital with a diagnosis of MS. I can't feel the floor under my feet, which leads to balance issues, but then, I was clumsy to begin with. :)  I also can't feel my lady bits as well as I used to, making it harder to have a fulfilling sex life.  I'm telling the world that I am "rolling with the punches," but really, I'm wondering what the heck am I going to do?  It's affecting both my legs:  am I going to be able to walk in 5 years?  In 2 years?  What if I can't keep working?  What if my partner leaves me?  I vacillate between wanting to tell everybody I know and tell nobody at all, including family.  I watched my aunt die of the disease, so the family is going to go to the worst possible scenario when they hear the news.

    But there are good things:  I have an appointment to see an MS specialist at John's Hopkins to look at treatment options and begin to move forward, and I'm going to get PT and work out with a personal trainer three times a week.  My partner and I have rededicated ourselves to getting healthier overall as a result of the diagnosis.  And we aren't going to stop doing the things we love, like an upcoming trip to the Southwest to raft the Grand Canyon. 

    But this ***** is scary.  I'm scared.  I don't know what to do with myself.   Anybody have any suggestions?
  • maria1
    Hello Kelsey,

    I have been reading the Tibetan Book of the Dead, it is supposed to tell you how to be with someone who is dying and what they see and experience. The biggest thing I get about it, is on almost every page it tells them not to be afraid because they will not see what they are supposed to see and experience. Fear stops one from experiencing life, fear of the unknown was a way our parents controlled us, don't go there, don't do that.... 

    Like they say, 'Be ALL that you can be". You will learn your limits as time goes by, but you will also learn your abilitiies. Most of my life I was shy, quiet and could not communicate, now you can';t shut me up. All my life I was sports oriented, now i am a thinker.

    Looks like you jumped out of a plane! If you were not scared that the chute would not open or if you were and jumped anyway, it is the same thing as living with ms. You can become a mental cripple, shrivel up and wither, or you can use all the minutes of your life, to give you a life with no regrets. I shoulda done this or that. In the end, all you have is time, wanna waste it worrying? or wanna make it a masterpiece you can look back on and glow about?

    The only thing you SHOULD do, is learn about the new you, do the body scan, do the brain scan(see for the body- in this section) notice the new you. I can't add any more, I can't drive anymore, but i can sure share with you, my experiences, because i have had years thinking about what is going on with me all these fifty years living with ms.

    Your plan has backfired is all. What you thought and dreamed you would do with the rest of your life is not what you are able to do, so now you get to write a new plan.

    A friend of mine was an artist and painter, had a debilitating stroke paralysing one side of his body, the side that was his painting hand, so he taught himself to paint with the other hand.

    It is just problem solving, or figuring out a puzzle, nothing to be afraid of, unless what you really want is to shrivel up- then be afraid to discover the new you. best regards, maria

  • HappyAliveDay
    Dear Maria, thanks for the reply.  I am deathly afraid of heights; so I went skydiving.  I guess, like you said, I will have to take the same approach to MS.  I'd like to jump out of the MS plane, but I'm not sure what that looks like.  I guess I keep paying attention to symptoms, keep trying to get healthier, and do what I can to feel like I am managing as best as I can. Whenever I go hiking there is always a supply pack I take with me with all my gear-- headlamp, first aid kit, leatherman multi-tool, a good knife, emergency blanket, extra water, protein bars, etc.  I wish there was an MS pack that I could stock up for myself for this hike.  I haven't figured out what would go in it if there was one.  Information, drug therapy, support groups, all the testing available...?  I dunno. 

    Thanks again for the reply.

  • echobird
    Glad that you have the courage to talk openly about the problems that you are having I have been dealing with this forever it seems and I don't even know half of it. Or I don't remember but what I do remember is that stress is a big deal with MS and heat so try and stay out of the sun when it gets to hot and avoid stress when possible. Might I suggest one thing that might sound weard coming from a guy but it may help you because if I'm correct the cluteris gets hot apon stimulation if I'm correct try an ice cube when trying and see if that helps down there because it has helped a couple of friends in the past from what I recall. Good luck and don't let it get you down.