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    Forum doesn't seem too active, but I'll try...

    Hi,

    I am 26 and I was diagnosed just over 6 years ago.

    It all started as a little trouble walking. A cane when needed, but not often. In 2011, it started getting worse; I would fall a lot, scuff my shoes, run into light switches, until it was a fall down a flight of stairs. Nothing was broken, my leg got caught in between the rails of the banister. It hurt, but it scared me. A lot. So I looked into the lioresal intrathecal pump. I got it in September. In December and 5 surgeries later, it was explanted. I had more troubles walking but I had a walker and my wheelchair for bad days. The next September I tried again. By August 2013 and 4 more surgeries later, it was explanted.

    I haven't really left my wheelchair. Two years ago, I was walking around my house, but now usually I just sit on my 4 wheel walker and my family pushes it like it's a stroller. I fall in the shower often and my mom has to get me out and dressed before my dad or brother can come pick me up, sometimes my mom helps me get dressed without the shower drama, I cannot cut my food, though I do feed myself. On bad days, I can't stand up from my bed, or get to the bathroom myself. My bladder doesn't listen to me all the time.

    I hate my life. I am terrified of the future and am unsure if I will ever be happy again. I have a wonderful family without them, I would have given up. I feel like as I am right now, I have no real value. I am a drain, on my family, on society. I have nothing to contribute. I go to a support group for people between the ages of 20 and 40 with MS, but no one can really relate to my progressed state and I feel alone in the group I have the most in common. I just don't know what to do anymore.
    Be patient and tough; some day this pain will be useful to you.

    #2
    feeling sad

    I wish I could give you a hug right now! I am a 63 yr. old grandma with ms and I have a 27 yr. old granddaughter who was just diagnosed with it also. You are obviously intelligent and articulate so maybe the way to feel useful is through your brain and heart and not your body so much. You could volunteer on a support website or maybe watch comedies and learn how to make people laugh so they can feel better. I dont feel very useful at times because I'm old AND sick but my kids call me everyday for advise and I make them laugh so they tell me they always feel better after talking to me. People spend alot of money to hear what Stephen Hawking has to say so people can listen to you for free! Every person has a worth, believe me. You will discover what you are meant yo do. You are so young! Keep trying and Good Luck! I believe in prayers and I'll say special ones for you!

    Comment


      #3
      responding to your post

      Hi!
      I haven't been using the message boards here too much for the last couple of months, but I just came across your post. I wanted to say that although I am not yet in your situation, I want to know that you are heard. I guess I am just beginning on my "MS journey." I was diagnosed in March, after experiencing Optic Neuritis.

      When I first was diagnosed I was using the message boards here (and a couple of other sites) like crazy. I felt so desperate for someone to respond, and I really do appreciate all of the responses that I did end up getting. (But, I know sometimes it took a few days to hear anything, and to me that felt like forever).

      I am unfamiliar with the pump that you mentioned and the surgeries that you had. How often does the support group that you go to meet? I think that this website is great, but if you do use FB I have also found a lot of good and highly interactive MS groups on there.

      Anyway, I just wanted to respond to your post. You aren't alone and your family loves you. Sending you virtual hugs and good vibes.
      RRMS Dx: 3/23/15
      (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
      Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

      Comment


        #4
        I am a 47 year old man in a wheelchair. I worked 10yrs after my diagnosis, but they could not do any more for me to remain at work. So I "retired". I did not "get happy." Until I came to terms with the fact that I had MS, but that did not mean I was worthless. I became a volunteer and now I try to help others and it makes me feel good. Check with your local chapter o,f the NMSS to see if they know of anyone that needs this kind of help. Find Local MS Chapter http://www.nationalmssociety.org/fin...ter/index.aspx
        best of luck to you, and remember, YOU ARE NEVER WORTHLESS!
        hunterd/HuntOP/Dave
        volunteer
        MS World
        hunterd@msworld.org
        PPMS DX 2001

        "ADAPT AND OVERCOME" - MY COUSIN

        Comment


          #5
          thank you everyone for all of your responses and your kind words.

          My support group is actually sponsored by the national multiple sclerosis Society in Colorado. We me once a month on the last Tuesday and we actually met this past week. I finally admitted how lonely and left out I felt by the group talking about all of the walks or biking or runs they planned for the next week or or whatever and how I simply felt really isolated by the fact that I am one of the youngest members of the group and I am the most progressed. We talked a lot about how in the last year my disease has gotten so much worse and about how I felt like my doctor wasn't helping me all that much. I really really like him and it feels wonderful that he has multiple sclerosis as well, but he wasn't helping me aggressively enough and I am so scared of the future and of what's going to happen to me.

          This last week is been really really hard because I am getting worse again. I have fallen and I have gone trapped in the shower because I couldn't sit up from the bench trapped in the bathroom because I couldn't stand up from from the toilet. And like I said my family's wonderful they help me graciously which I am so thankful for. But I'm 26. I'm not ready for this. I really want to get a job to help pay off my student bills because I just graduated from college thankfully after the eight long long years. But I am afraid that if I get a job I will lose Social Security disability insurance and if I lose that I will lose Medicare which cannot happen. And how can I get a job if I don't even know if I will be able to stand up tomorrow morning. Or if I'll be okay at work after I get there.

          I can't drive anymore of course I had to stop last year no sorry the year before that June. Myfamily drives me everywhere: doctors appointments, to get food, to go to the mall, and they'll have to do that when I get a job as well. It is extraordinarily difficult to get excited about the future when so much is in doubt. I'm sorry for making this long post I just got a new program called Dragon and it's helping me type all of this. So I'm trying it out and instead of properly responding to your guys' posts I'm instead monologuing to you which is kind of weird sorry.

          Not that I am unthankful or ungrateful for your responses, just hoping to find someone my age who is struggling with this like I am because I feel so desperately alone. But again thank you, you are all very kind.

          ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
          Be patient and tough; some day this pain will be useful to you.

          Comment


            #6
            Hi and welcome!
            I'm sorry you have to be here but glad you found us. MS really sucks and I don't know any cheerful way to gloss over that.

            I was under the impression that if someone is disabled they might be able to have their student loans waived. Maybe check into that if it is weighing on your mind.

            I use dragon speak at work and once you get the hang of it you will love it. You will probably figure out the nuances quicker than I did cause I'm older.

            Please write here any time!
            Jules
            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
            Anonymous

            Comment


              #7
              Originally posted by Jules A View Post
              Hi and welcome!
              I'm sorry you have to be here but glad you found us. MS really sucks and I don't know any cheerful way to gloss over that.

              I was under the impression that if someone is disabled they might be able to have their student loans waived. Maybe check into that if it is weighing on your mind.

              I use dragon speak at work and once you get the hang of it you will love it. You will probably figure out the nuances quicker than I did cause I'm older.

              Please write here any time!
              Jules
              I forgot to respond to this but I did apply for a repayment plan based on income and since I'm on SSDI/SSI I no longer pay anything. So thank you for your idea!!!
              Be patient and tough; some day this pain will be useful to you.

              Comment


                #8
                hi ham_sillier,

                I realize that nobody has posted here in a while, so I hope you see it. I just wanted to mention that I completely empathize with where you are at! Within the last two years I have gone from using a cane to using a walker to using a manual chair to being permanently in an automatic chair (good thing the insurance I have covered most of it). I too have gone to an MS support group where I just don't really think they can understand the situation I'm in as they talk about exercise schedules or morning walks and driving problems and blah blah blah. I only wish that I had some of their issues. So you are not alone!

                I am actually going to graduate school right now, going for a PhD in acoustics. Hands don't work too well, so Dragon has become a good friend of mine. It's really odd, but it seems like the worse I get, the more I push to try and do. Anyways, the point I'm trying to make I guess is that where there is a will there is a way (as corny as that sounds) and that you are not alone even though it might seem sometimes like you are. Hope all is well, and keep fighting the good fight (okay, well maybe not good fight but one which seems unavoidable anyways).

                – Joe

                Comment


                  #9
                  hi Joe,

                  I just happened to check on in MS world tonight because I have my Dragon on as well. I got it as a gift from my grandmother from my recent college graduation. My progression to my wheelchair was about as fast as yours but yeah it was a hard pill to swallow and now I seem to just be retreating into my room or to our house. I go out last and last because it's so hard to leave, it's so hard to find the motivation because I know it's going to be a struggle. My parents have recently made it easier by getting of ramp in our garage from where the cars are up into the kitchen. but I have been living so long without it that I just have this mental block, my default thought is that I am going to struggle to get up the stairs and boy was it a struggle.

                  I know it's really hard for my parents to watch all of this, so I'm going to start physical therapy again and I'm going on another disease modifier because Rebif is just not working. but I'm back on track to the fighting against my progression. Thank you so much for responding I really do appreciate everyone trying to help me work through this. I can be a little stubborn sometimes.

                  Sam
                  Be patient and tough; some day this pain will be useful to you.

                  Comment


                    #10
                    Hi. I do not get on these boards like I used to get on. I was diagnosed at 26. That was a really cruddy Christmas Present. I was diagnosed about 12/18/06. The Trouble started on 12/14/06. The doctors thought initially that I had had a stroke. I went on Rebif and did that for between five and six years. I am not on Tysabri. December will be three years on Ty. It has been a good treatment for me, but it is still scary to me. I hope you can work everything out. And Remember one thing. Your Family loves you and they hate seeing you suffering like this. Your Parents will bend over backwards to help you. You will just have to be thankful for them.

                    Comment


                      #11
                      Soooo late to this thread!

                      I'm so sorry I just now am responding to this, I'm generally in the chat rooms more than on the message boards these days. I just wanted to let you know that I'm also 26 and though not as progressed as you I'm sure I'm still not great either. I was diagnosed at 19 (I think, memory is AWFUL) with "too many lesions to count" and sometimes have to use a chair and more often these days a cane. It's incredibly lonely and bewildering to be saddled with this bag of suck of a diagnosis so early in life, especially when it decides to be aggressive. I definitely get the helpless feeling of not being able to do basic things for yourself like bathe on your own schedule or just generally having to rely on your family for help with things you should still be able to do at your age. I'm always down to chat if you'd like to, since I don't work I'm at home on the computer most of the time and I swear I'm mostly friendly!

                      ~Elly~
                      I choose to live and to grow, take and give and to move, learn and love and to cry, kill and die and to be paranoid and to lie, hate and fear and to do what it takes to move through.

                      Comment

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