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    #16
    Originally posted by Daisycat View Post
    Yes it would be 100% less meaningful to volunteer at one since my goal was to retire one day and own a dog rescue. Volunteering at one just is not the same.

    And I am not going to ever adjust to living with this curse. I will find out a way to prove I was misdiagnosed and sue the hospital fir millions for destroying my life. And no I do not need helpÖ accepting that my brain is rotting and that I have no future is something I WILL NOT do.
    And as for your quotesÖ. I donít think life knows how to show love if making someone think they have this curse Is how it shows love.


    And if I can ask why did you tell people you work with about this? I am so ashamed about this curse that I would have to quit my job if people found out.
    I would have thought the goal was to shelter and rescue animals. My bad.

    I told a few ciworkers when I worked thru a flare, and from steroids, my face was bright red. Two people guessed as they had friends and family members with MS and knew the "steroid flush". I told more people when I needed to modify my schedule for infusions every 28 days. I was fortunate - noone treated me differently and my job was not in jeopardy. Most respected my work ethic. Of course, I didn't feel ashamed as there was nothing to be ashamed about. Sad you feel there is.
    Kathy
    DX 01/06, currently on Tysabri

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      #17
      Owning my own = making choices about how things are handled. Having to only volunteer because of my curse = a constant reminder of my short comings. And that makes sense about why you told coworkers I guess. I would have had to come up with a lie but since Iíll never spend another night in a hospital because of this I wonít have to think of one. To me it is shameful to have this. Itís basically admitting my brain doesnít work right and itíll make people question if Iíll be competent enough to take care of my patients. If something did happen and it ever got out that Iím cursed I could see a huge lawsuit from an owner because the company allowed someone with a possible mental disability to take care of their animal unsupervised. And the day Iím told I need a baby sitter at work is the day I sue for discrimination and file for long term disability.

      Comment


        #18
        Not everyone has cognitive issues. You can get neuropsychological testing to give you a baseline. You can get retested over time. They can tell you if any deficits, and if so, are they normal for your age. That would alleviate your fears of whether you should be caring for animals.

        As an FYI, there are people with MS in all professions. I met a surgeon who continued to operate. He eventually had to limit to short general surgeries for fatigue reasons. He has since retired, at the age of 68.

        Just because a disease has a potential symptom doesn't mean you will get it. If someone in your field had low blood pressure, I wouldn't expect them to quit because they could pass out. If someone had high blood pressure, I wouldn't expect them to quit because they could have a heart attack or stroke. Only if uncontrolled and symptomatic would I expect them to leave my dog to someone else.

        Your negative attitude, inability to accept any help or suggestions, and stress will limit you more than MS at this point. You admit to depression but won't seek help. You are choosing to stay stuck. I hope one day, you move forward. Everyone deserves to find peace in life.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #19
          I didnít know about that test. If my attempt to find something else as the cause of my issue last year fails I might look into that. I donít get why these people are admitting to people they have this... are these people you know. I guess Iím mostly confused how it comes up in conversation. And I am depressed but for me the thought of accepting that I have this curse is more depressing. Itíll be like I have finally given up on everything. As long as I have that 1% hope itís something else I have reasons to keep going. I miss my old life, but I know thatís gone. Even if this somehow turns out to be something else thereís no way I could go back to how I used to be.

          Comment


            #20
            Originally posted by Daisycat View Post
            I donít get why these people are admitting to people they have this... are these people you know...And I am depressed but for me the thought of accepting that I have this curse is more depressing. Itíll be like I have finally given up on everything.
            Daisy, you need to stop trolling with terms like "this curse" and speaking about people with MS like they are pariahs. You are starting to sound like someone who believes handicapped people have no place in society. And that sentiment is extremely distressing for most folks reading these forums. Hence the word, "trolling." Please take heed moderators.

            People have offered suggestions of exercise, support groups, and spent so much time providing impassioned examples of how their lives have been fulfilling despite having MS. I just thought of one other thing that makes chronically ill people feel better: Gratitude. One example of gratitude would be - even in just one response - to say Thank You.

            And not one more post like the above. Not one.
            All the best, ~G

            Comment


              #21
              Originally posted by Daisycat View Post
              I didnít know about that test. If my attempt to find something else as the cause of my issue last year fails I might look into that. I donít get why these people are admitting to people they have this... are these people you know. I guess Iím mostly confused how it comes up in conversation. And I am depressed but for me the thought of accepting that I have this curse is more depressing. Itíll be like I have finally given up on everything. As long as I have that 1% hope itís something else I have reasons to keep going. I miss my old life, but I know thatís gone. Even if this somehow turns out to be something else thereís no way I could go back to how I used to be.
              I apologize for saying you should not post anything like the above. That was wrong - free speech is important. But I stand by other parts of my previous response in that people are here to support you and I think an apology and thanks are in order at this point.

              All the best, G
              All the best, ~G

              Comment


                #22
                Originally posted by Daisycat View Post
                ... I donít get why these people are admitting to people they have this... are these people you know. I guess Iím mostly confused how it comes up in conversation... "
                Let's say that you were walking to your vehicle and slipped and fell. You broke your arm in the fall. Would you explain the cast on your arm by declaring declaring that doctors don't know what they are talking about? Or would you say that it was your fault for being clumsy enough to fall and break your arm (ie something that you caused to happen)?

                Well MS is not something that you caused. It is more like developing cancer. Would you ignore that too? Your life would be just as "ruined" with cancer. Or would you let others know what was going on with you then?

                I let others know that I have MS because they knew something was wrong anyhow. Rather than have them wonder and come up with wrong conclusions I cleared the air by telling them. I used it in teaching because of the examples that I was able use in making certain points.

                I NEVER felt that I was unworthy to do anything because of MS. And since there is nothing that I did to cause it I have never felt "ashamed". If anything I am proud of all that I have accomplished in spite of having MS.

                I don't meet someone and start the conversation with "Hey I have MS", but I don't shy away from talking about it either. My family knew as soon as I did (of course) and the younger people in my family have never known me any other way. But it doesn't change things for them - to them I am "normal". To them it is kinda like if everyone in the family had brown eyes and mine were blue. The older family members (including my younger brothers) tend to forget that I have MS. It does still pop up sometimes, but not as the central point of ME (the blue eyed thing again).

                In other words for me it is simply not that big a deal. The sky is blue and the grass is green and I have MS. All are just facts.


                Originally posted by Daisycat View Post
                Even if this somehow turns out to be something else thereís no way I could go back to how I used to be.
                Finally the beginnings of acceptance. Well done .

                Comment


                  #23
                  Originally posted by Daisycat View Post
                  I didnít know about that test. If my attempt to find something else as the cause of my issue last year fails I might look into that. I donít get why these people are admitting to people they have this... are these people you know. I guess Iím mostly confused how it comes up in conversation. And I am depressed but for me the thought of accepting that I have this curse is more dewpressing. Itíll be like I have finally given up on everything. As long as I have that 1% hope itís something else I have reasons to keep going. I miss my old life, but I know thatís gone. Even if this somehow turns out to be something else thereís no way I could go back to how I used to be.
                  Hi daisycat,

                  How true. Once diagnosed with MS or something else, it is hard to go back to how you used to be. Even fully recovered, emotionally it changes us.
                  But that doesn't mean that you can't go back to doing things you enjoyed, working out, and hanging with friends.

                  You are young. What defines your life at 25 may be different than 35, than 45, etc.. And this is true regardless of MS or disease free. We constantly adapt to life and priorities change.

                  As for how it comes up, with close friends I told when they knew I was different, not joining them or if I did, distracted. They kept my secret and stood by me.

                  Work, I only told when I needed to. Even then, the people I told kept my confidence. Because I kept doing my job the way I always did, it was not an issue between us. If anything, they would tell me not too push myself so hard.

                  Accepting you have some chronic illness is not giving up on life. It is how you respond to the diagnosis that will determine if you are giving up on life. Right now, you appear to have no desire to fight for your life. I truly hope that you find strength and can fight. You have so much of life ahead of you.

                  Can I ask one question. Why is it you are so determined to be the 1% that was misdiagnised, but that you can't use that same determination and work as hard as you can to be in the % of MS patients who don't progress?

                  A recent NARCOMs study showed that the proportion of those who recorded need for at least bilateral assistance to walk increased from 5% at year 0 to 13% at year 10 to 52% at year 45. This means with the average age at diagnosis 30, only 52% needed a walker or bilateral crutches at the age of 75! Likewise, 25% of MS patients reported they could still work a full day after 45 years with MS. The other thing to understand that on average, it took 7 years from onset to diagnosis. Meaning these stats will keep getting better due to earlier time to diagnosis and earlier start of disease modifying therapies, most of which are more effective that the early drugs.

                  When you have your follow up with an MS specialist and if they conclude MS after more testing, ask them about prognosis and latest disability stats. Your odds are better at living the life you want than they are of being misdiagnosed.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #24
                    I do try to work out every day , but before this happened Iíd wake up early and go before work since I knew after work I would be exhausted since my job does require a lot of physically activity. Now I have a hard time waking up early so I am not sure when to still work out. If it wasnít hot outside I would take my dogs for a walk at night but until it cools down I canít. I donít hang out with friendís really anymore because none of them know about this and I am not sure what to say when they ask me questions about why I am so depressed or why I stopped working on my specialty. It also makes me more depressed when I see them making plans for their future.

                    I am thankful for the few people I told, but I feel like I canít really talk to them about how I feel and they just donít get it. My mom believes all I need to do is pray and everything will be 100% better. I am not telling her this because I do not want the headache of it but I do not believe in God. My boyfriend is supportive but I know he doesnít want to spend every day hearing about this. The one person I trusted at work 100% to tell was amazing and I was able to talk to them about how I felt all the time. This person ended up getting a very nice promotion and moved to a different city. I am very happy for him since I know it was what he had wanted , but it still is hard to lose someone I had who I could talk to. I donít really feel comfortable telling anyone else. I think I mentioned I did tell my practice manager. It wasnít really so I could talk to her about my feelings Ė more of a I need her to understand why my mood might be terrible some days and I might ask to have less interaction with people. I can usually fake it at work enough but some days I canít.

                    I want to be the 1% that is misdiagnosed because if this ends up being something as simple as a B12 deficiency (which I was not tested for) I will feel like I am being given a second chance. I wonít have to think about injecting myself or waiting on getting my new piercing because the MRI would rip it out or flying somewhere and the airline loses my medicine.


                    I think my Dr. Google habit makes things worse but I am addicted even though I know how bad it is.

                    A broken arm to me is not as embarrassing as MS is. And as for cancer it would depend on the stage it was when I found it. Stage 4 I would not put myself through Chemo for a small chance of survival. If this lump in my breast does end up being cancer I am not sure what I will do since hospitals give me panic attacks now. I am having to have someone drive me to my testing tomorrow just because I canít handle going alone.

                    I donít think I could ever just let people know I have MS. I would feel ashamed and like they were judging everything I did. I would also assume it would prevent me from any promotion at work. I know thatís illegal but you have to be able to prove it. I donít think I will ever get to the point to where I can tell people and not feel ashamed (even if I do get to the point of accepting it)

                    Comment


                      #25
                      My mom believes all I need to do is pray and everything will be 100% better. I am not telling her this because I do not want the headache of it but I do not believe in God.
                      It's okay Daisycat. Some believe, some don't and I believe each person has the right to choose what they believe in and what they don't. Changing your outlook on life can be as simple as starting a list of things you are grateful for or things that are positive. Try to take MS out of your thoughts and lists as you are not grateful or happy with MS.

                      I hope you have been reading the thread started by pennstater in the general forum, maybe it might help if you keep reading all of the different quotes. You can set intentions (positive) and repeat these intentions through out the day, out loud or in your head. This is not a miracle but the more positive energy you put out the more you might be able to improve your thought process.

                      "Intentions are like magnets. The more we declare them, believe in them and act in ways to manifest them the more powerful and real they become."

                      You attract what you put out; negative energy attracts negative energy. Positive energy attracts positive energy. You will remain stuck in the cycle you find yourself in until you make changes and learn what your life is trying to teach you.
                      Diagnosed 1984
                      ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

                      Comment


                        #26
                        I do feel kind of like I want to ďpunishĒ myself because I feel like this curse is somehow my fault. I feel like I donít deserve anything good in life. Iíve given up on applying for any promotion at work past where I am since I feel like someone who is normal would be more deserving. I just donít see how I can take any of the suggestions since I do not feel like I am worthy of anything. I actually feel worse when I do try to do something to be happy since I feel like I am unworthy of anything good in life now. I basically feel like my life is a mistake and I shouldnít really even be here. I know I am doing a bad job at explaining how I feel, but I canít really explain it perfectly. I am not trying to say I am going to end my life today, but I do think it would have been better if I had just never been born.

                        Comment


                          #27
                          Originally posted by Daisycat View Post
                          I do feel kind of like I want to ďpunishĒ myself because I feel like this curse is somehow my fault. I feel like I donít deserve anything good in life. Iíve given up on applying for any promotion at work past where I am since I feel like someone who is normal would be more deserving. I just donít see how I can take any of the suggestions since I do not feel like I am worthy of anything. I actually feel worse when I do try to do something to be happy since I feel like I am unworthy of anything good in life now. I basically feel like my life is a mistake and I shouldnít really even be here. I know I am doing a bad job at explaining how I feel, but I canít really explain it perfectly. I am not trying to say I am going to end my life today, but I do think it would have been better if I had just never been born.
                          Oh Daisycat, my heart goes out to you. Are you feeling this way soley due to your diagnosis? I know you don't want to hear it, but you could really benefit from therapy. You deserve to be happy, you deserve to be proud not ashamed, you deserve to feel worthy in life. YOU DID NOTHING TO CAUSE MS, NOR DID YOU DO ANYTHING TO DESERVE IT. You inherited some genes that left you succeptible to it and the perfect storm brewed to bring it out of hiding.

                          Depression can cause unabating tiredness and do a number on self-esteem. And it doesn't matter if it is clinical depression or situational, such as can happen with a diagnosis.

                          Being upset, fearful, angry are all normal feelings when working towards acceptance. You just can't stay stuck there too long.

                          Try to remember you are worth making an investment in your happiness. Every time those negative thoughts cross your mind, ask yourself if you are being fair to yourself and replace it with a positive thought. Fight hard to be fair to yourself. At work, tell yourself you deserve it as much as the next person:. you care, your passionate about the animals, you work hard, and can do the same job your peers do. Don't let the fear of future limit you. Absolutely noone knows their future. That healthy cowworker could quit, be in an accident, develop a disease that is 100% disabling or fatal. Or that healthy coworker may not be as healthy as you think.

                          Please, please, treat yourself like you would your boyfriend or a good friend. You need kindness.
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment


                            #28
                            Originally posted by pennstater View Post
                            YOU DID NOTHING TO CAUSE MS, NOR DID YOU DO ANYTHING TO DESERVE IT. You inherited some genes that left you succeptible to it and the perfect storm brewed to bring it out of hiding.


                            Please, please, treat yourself like you would your boyfriend or a good friend. You need kindness.
                            I share these thoughts too, Daisy, and I really want you to think hard about this.

                            Once many years ago after I had been diagnosed, I felt that I had done something wrong to cause this, but didn't share these feelings with anyone. They lurked and festered within me like a toxic chemical. Unlike you, I didn't even know about MSWorld and the support I could have gotten here. I'm really glad you reached out to us, however hard that must be in sharing your despair.

                            I finally found a therapist who I like to think saved me from myself. I wasn't suicidal, but terribly depressed. After two years I finally came to grips with my situation. It wasn't all easy, but I'm glad I did.

                            I'd like to share with you something that my therapist gifted me in a card for one of my birthdays:

                            "It's time somebody told me that I am lovely, good, worthy and true and that my essence shines bright.
                            It's time somebody told me that my love is complete and that my strength and warmth uplift.
                            It's time somebody told me how much they want, love and need me, how much my spirit helps sets them free.
                            It's time someone told me that joy is in my smile and that my eyes fill the world with light.

                            It's time somebody told me. IT'S TIME FOR ME TO TELL ME!"

                            Care care of yourself, Daisy!
                            1st sx '89 Dx '99 w/RRMS - SP since 2010
                            Administrator Message Boards/Moderator

                            Comment


                              #29
                              I am 100% feeling this way because of this curse. I feel guilty that my boyfriend might one day have to become m caretaker. I feel guilty that I might not be able to care for my animals. I feel guilty that all the plans I had made for my future will never happen. I feel ashamed that I have this curse and will for life.

                              I donít think I can ever accept this curseÖ knowing how my life might end up is just something I do not want. Spending 5 sleepless nights in a hospital gave me lots of time for Dr Google and I found probably the worst sites and had the worst experience I could imagine at a hospital. I cannot stress how horrible I was treated by those people. I think since I was treated so horrible by the people at the hospital it made me think thatís how all ďnormalĒ people view people with this ďcurse.Ē I didnít even know what this disease was before that day. I thought it was what Michael J Fox has.

                              If this is something that I inherited genetically I canít understand why the universe allowed me to even be born. It would have been better for a ďnormalĒ person to have been born in my place. This disease has made me realize what a hole this universe really is and how life is 100% unfair and it doesnít matter what you do or how hard you try if you were dealt a crappy hand you canít do anything about it.
                              I canít think of the words to explain how it would make me feel if I accepted this ďcurseĒ. Even thinking about accepting it makes me cry.

                              Comment


                                #30
                                Is the diagnosis of Multiple Sclerosis the first time you have ever dealt with difficult situations in life?
                                Every single person in this world deals with "storms." Every person has something going on in their life (serious health problems, relationship issues, divorce, mental health problems, and the list can go on). No life is perfect.

                                Your perception of a stranger based on a smile or laugh is not correct. Through the years I have struggled with Post-Traumatic-Stress-Disorder(PTSD) and the secondary symptoms it has created. Anyone looking at me would have no idea what is going on inside of me, I "appear" perfectly happy and "normal."

                                I was diagnosed with PTSD in February 2004. I came to learn and understand I have had PTSD since the age of 2. I was born to a mother who was 14 years old. I was abused, neglected and not protected. This was my entire childhood. I was a scape goat for everything wrong in her life and she doesn't love me. I walked away years ago.

                                This disease has made me realize what a hole this universe really is and how life is 100% unfair and it doesnít matter what you do or how hard you try if you were dealt a crappy hand you canít do anything about it.
                                Life is not 100% unfair.

                                You have the ability to change and grow into a beautiful person who can help others with their struggles. I suspect the negativity and self hate you project was there before the diagnosis of MS, it's just easier to blame everything, your entire being, on MS.

                                You can triumph over the way you feel about yourself if you will only take that first step and acknowledge you deserve better and seek professional help.

                                After many years I finally have my freedom of the past and a life that has a purpose, love, peace and calm. You can do the same, I know you can. Love yourself enough to want better than the way you are living.
                                Diagnosed 1984
                                ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

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