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    #1

    Trying to be grateful...

    I haven't been here for awhile but I lurk and read some posts here and there. No offense to anyone but some of the stuff scares the heck out of me.

    I know no one knows what's going to happen and there's no crystal ball, everyone's different, blah, blah, blah but in harsh reality....it really doesn't matter what I do or don't do, does it? I have a spinal cord lesion that they think is responsible for my dizzness/vertigo. Well, that's not ever going to get better, right? So the best I can look forward to is getting worse and worse over the years? I will never feel better than I do right now? (Which is crappy most of the time.)

    I first heard the words, "It can't be anything other than MS" 1 year and 15 days ago and I still can't get a handle on what I'm supposed to do now.

    This bout of crappy depression is probably due to my upcoming FOURTH MRI in a year and the appt with the neuro that follows that. Can't I just go ONE day without thinking about the future horror I have to look forward to??
    Tags: None
    #2
    Oops

    Don't know how this got posted twice. I tried to change the title because there sure wasn't any "gratefulness" in this post...

    Comment

      #3
      Have you been in touch with the local NMSS or an in person support group? It might help you cope to talk to others in real life who know exactly what you are going through.

      A few books might also help you cope a bit more with this crappy disease:

      - Living a Healthy Life With Chronic Conditions (see this thread too)
      - Thoughts and Feelings
      - Mind Over Mood

      Comment

        #4
        No one can say anything to change your attitude. We can tell you that we understand but you already know we are all in the same situation you are.

        It doesn't matter if you have MS or you don't; you are the only one who chooses how you will live each day. You can choose to live your life to the fullest even with it's limitations or you can choose to let your MS define your life.

        Every day I hurt; I fall and I am reminded I have MS. But I have a future.

        I hope you find spiritual hope and some resolution. There is so much more to life than MS.

        J
        Diagnosed with MS spring 2010; Still loving life

        Comment

          #5
          Originally posted by October22 View Post
          I have a spinal cord lesion that they think is responsible for my dizzness/vertigo.
          Hello October,

          Spinal cord lesions do not cause dizziness or vertigo, brain lesions do. Spinal cord lesions affect the body from the point of lesion...down.

          All of your questions and concerns are quite valid

          Unfortunately, only time will be the answer for you. Some with this disease do relatively fine, some are not doing very well and there is everything in between.

          justacowgirl and misslux have given you good advice and resources.

          You may want to speak with a Mental Health Professional to help you cope with the diagnosis of MS.

          Take care...
          Diagnosed 1984
          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

          Comment

            #6
            Originally posted by SNOOPY View Post
            All of your questions and concerns are quite valid

            Unfortunately, only time will be the answer for you. Some with this disease do relatively fine, some are not doing very well and there is everything in between.

            You may want to speak with a Mental Health Professional to help you cope with the diagnosis of MS.
            I agree and I think everyone handles news like this and copes with their own style.

            Even 10 years down the road my attitude about having MS and my concerns about my likely prognosis are fairly negative. I'm not a fan of denial and think being optimistic in the face of disaster is over-rated.

            I am fully aware and accept just how horrific this disease can be but have resolved to continue moving forward with my career and physical activity for as long as I am blessed to be able to but deep down the horrors of MS are never far from my mind.
            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 misslux View Post
              Have you been in touch with the local NMSS or an in person support group? It might help you cope to talk to others in real life who know exactly what you are going through.

              A few books might also help you cope a bit more with this crappy disease:

              - Living a Healthy Life With Chronic Conditions (see this thread too)
              - Thoughts and Feelings
              - Mind Over Mood
              Thanks for the reads. I will see if the NMSS can mail them to me so I can read them on the cheap.

              My attitude about MS stinks.
              Tawanda
              ___________________________________________
              Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

              Comment

                #8
                In addition to differences in our MS status, we have widly different life situations to consider when making comparisons.

                Some of us may be in very supportative, loving relationships with a spouse/partner earning a lucrative income, extended family and friends, grown children and financial security, primarily concerned with fatigue while meeting with architects, decorators and contractors for the upgrade of the family home.

                Others with MS may not have a loving supportive spouse or partner, no extended family or group of friends, with young child/ren to raise, while fighting financial insecurity at every turn.

                Most of us are probably somewhere between of the two extreme examples, relationships that vary over time, 'just' able to meet the bills some months, some of us able to continue working for now.

                Comment

                  #9
                  I think we all need to remember many people here are suffering with a MS, depression, pain, etc. Most of us are also somewhere in the grief cycle between denial and acceptance so that also needs to be taken into account. It sounds like you too are dealing with the grief cycle and that is completely normal. Don't beat yourself up for being normal.

                  Daily progress is being made in the fight against MS. There have been 3 oral medications released in the past two years. Research has discovered new DNA markers, a slew of potential new causes or contributing factors have been found. Stem cell treatments are showing indications that remyelination may even be possible. If an outright cure is not found in your lifetime, the treatment options certainly will be much improved.

                  I am completely convinced your actions certainly do make a difference.

                  I would suggest you find a good counselor to help you with "grief, life change and chronic illness." There is no magic wand, but they can help walk you through some aspects of it. If your insurance doesn't cover it or finances are an issue you can find out what community resources are available or potentially receive free or discounted counseling from a local charity or church. The NMSS may also have a support group in your area. Your neurologist or GP might be able to suggest a program in your area. Unfortunately, finding a good counselor can be frustrating as well, but it is worthwhile.

                  Lifestyle changes can reduce the overall impact of MS on your body. Work on improving your diet, developing healthy sleep habits, physical and mental exercise, and reducing stress can all be beneficial. Smokers generally have a rougher life with MS than non-smokers. While none of these items are a cure, they all can help improve your quality of life. Over time, you will also get better at dealing with specific symptoms or nuisances. Even the number of MRIs you have should be reduced from where you are now.

                  Specific symptoms, like dizziness and vertigo, may come and go over time. You might consider visiting an EENT to rule out other medical conditions. A physical therapist may also be able to help you with vestibular rehabilitation. Others have made improvements with acupuncture or visiting a chiropractor. I'm just trying to give you options without endorsing the above therapies.

                  So while I am hopeful, I still understand that MS can often be quite cruel. I'm just coming off a bout with optic neuritis and hopeful that my vision fully returns. So while my right eye is jacked up I am glad I can see my wife with my left.
                  Focusing on the positive aspect of life instead is important to my attitude and mental health. Instead of dwelling on the things I cannot change, I try to make positive changes and actions like eating an apple instead of french fries. I also try to appreciate the blessings in my life ... a great wife, good friends, air conditioning, pizza delivery drivers, a fun church, etc.

                  I'm glad you shared your situation with us and understand all of your sentiments. There are days when most of us could post the exact same message. I only hope some of the responses you have received are helpful. Please keep us informed on how you are doing.

                  Comment

                    #10
                    Hi

                    I know this disease can be a downer but I have learned over the years that if I really want too I can figure out ways to work around it. There are so many other folks out there worse off then I am. I figure if they can handle it so can I.

                    Comment

                      #11
                      Originally posted by Tawanda View Post
                      Thanks for the reads. I will see if the NMSS can mail them to me so I can read them on the cheap.

                      My attitude about MS stinks.
                      They are definitely worth a read. Without them (and talking to a social worker whose patients are all chronic disease sufferers), I think I would have continued to sink into despair.

                      Comment

                        #12
                        [QUOTE=October22
                        I first heard the words, "It can't be anything other than MS" 1 year and 15 days ago and I still can't get a handle on what I'm supposed to do now.?[/QUOTE]

                        Follow the three L's..... LEARN. Learn all you can about your body and remember...you have MS it doesn't have you. LIVE. Live life to the the fullest when ever you can. Lord knows you may be too tired to do it later. And most important LAUGH. Laugh at all the people who don't know half of what you do about your own body but are going to tell you how you feel. Laugh at all the people who are sitting on their butts letting their lives pass them by because they think they will have time to do it tomorrow.

                        When I first heard I had ms it was in 1993, and that was it. The only drug I was offered was anti-depressants. A lot has changed from then to now. Yes it is scary and confusing and a lot of other things unpleasant . But MS does not have you....say that every single morning you get up and believe it.

                        Comment

                          #13
                          You have many, many good years ahead, with any luck. This thing, it's neither as good as you hope, nor as bad as you fear.
                          (I may have said that before. It's still true, 16 years later.)

                          Comment

                            #14
                            Just wanted to say thanks

                            I appreciate all the replies. I lurk but don't log in to comment as much as I could. I find the more I think about this crap and read about it, the easier it is to get depressed about it.

                            Thank you, thank you for the kind words and support! Just knowing there are people out there that understand makes a huge difference!

                            Comment

                              #15
                              Originally posted by October22 View Post
                              I appreciate all the replies. I lurk but don't log in to comment as much as I could. I find the more I think about this crap and read about it, the easier it is to get depressed about it.

                              Thank you, thank you for the kind words and support! Just knowing there are people out there that understand makes a huge difference!
                              October22-please don't give up hope ... Try to find things that motivate you and do those things. I just joined this board a few days ago because one of my 11 year old twin daughters was recently diagnosed with having CIS and being at high risk for getting MS. She has started taking avonex. (See my intro in that forum). I am so nervous for her future and what it holds. The thing is right now she is good - no major issues. But it's so hard for me to believe that my 11 year old could get MS and is being treated as if she has it. But I am staying positive and making sure she is positive ... She is old enough that she needs to know about her condition and it's seriousness but at the same time, I want her to enjoy the present. Don't lose hope.

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