Announcement

Collapse
No announcement yet.

I want off!!!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    I want off!!!

    I want off! this is not the life

    I want a do over. This is not what I wanted to be doing at this time in my life. When I turned 40 I wanted to be an empty-nester with free weekends instead of having to learn how to deal with MS. I wanted to be free to take my horse up to the Ouachita Mountains and ride for a couple of days at a time. I wanted to be teaching the subject I love. I wanted to be able to travel. Now, I'm depressed most of the time. I am lucky if I can saddle up and ride for a couple hours once a month. I substitute at a local school and I will be giving that up now.

    I just want off this train wreck so I can have a normal life. I want to enjoy my grandson, not dread the energy it takes to care for him. He is a very well mannered polite child that is no trouble but I still use a lot of my energy reserves.

    I don't want to have to save money up to have another mri when I'm still paying for the last one. I want to let my husband see how bad I really feel. I am tired of feeling like I am wearing a ball and chain and have to carry it through every thing I do.

    I'm sorry but sometimes I have to vent or I will go crazy.
    All sunsets are beautiful, but the most amazing sunsets have a few clouds.

    #2
    I know exactly how you feel and you have nothing to apologize for. We, MSers, have been robbed of health, and our very lives, and we have no recourse. I feel like every MSer has good reason to 'scream'!

    Comment


      #3
      Yup; I get it. I don't wallow in my symptoms and my illness, but, sometimes, I just need to vent too. It's not what we signed up for.
      ~ Faith
      MSWorld Volunteer -- Moderator since JUN2012
      (now a Mimibug)

      Symptoms began in JAN02
      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
      .

      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

      Comment


        #4
        Thank you for understanding.

        I was subing today at a local school. They asked me to come back tomorrow but I just can't do 2 days in a row. That gets me down. I also have to have another MRI and I haven't even finished paying for my last one. I just see myself sliding deeper and deeper in this well I'm trying to climb out of.

        It would help if my husband could just let me vent without getting mad because I didn't clean the kitchen last night.
        All sunsets are beautiful, but the most amazing sunsets have a few clouds.

        Comment


          #5
          Have you tried educating him on the fatigue that comes along with this disease? Have you taken him to your neurologist appointments with you? I have found that the more mine was educated about the disease, the less he took it out on me, and the more willing he was to step up and do the laundry and the dishes, and cook too.

          Good luck with yours
          Take care
          Lisa
          Disabled RN with MS for 14 years
          SPMS EDSS 7.5 Wheelchair (but a racing one)
          Tysabri

          Comment


            #6
            SCREAM all you want. You've got company.

            Comment


              #7
              Originally posted by Mamabug View Post
              Yup; I get it. I don't wallow in my symptoms and my illness, but, sometimes, I just need to vent too. It's not what we signed up for.
              Yep...I get it too! I did not sign up for it either.

              Sulfur Kennel-Venting is 100% authorized. And if you have to get steroids...I think "wallowing" is O.K. too.
              Katie
              "Yep, I have MS, and it does have Me!"
              "My MS is a Journey for One."
              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

              Comment


                #8
                steroids

                I take steroids every month and my hubby actually gets how I feel after them. He just doesn't get the rest of the month. I have tried to get him to go with me to the Dr. but he hasn't been with me since the first couple of appointments back in '07.
                All sunsets are beautiful, but the most amazing sunsets have a few clouds.

                Comment


                  #9
                  I think we can all relate to how you are feeling. I have what I call quarterly melt-downs....sometimes more. It's very hard when you need to swallow what your really thinking. I would love to be able to tell you what to do to get your husband to get "it". It is scary too when you think your all alone.

                  This web site is very special because you can vent and yell and scream. I had to "retire" after working for 35 years and it is very tough. I have a lot of pain and mobility issues so getting around on my own is almost impossible. I luckily have a supportive family backing me. Sometime I actually get so mad because he is so understanding.

                  How long have you been dx? Does he or will he read about MS? Have you gone to any of the chats? There is typically someone on chat throughout the day if you don't want to go to a scheduled chat. I was very depressed last summer. I was changing neuros, problems with my ex and just plain done with MS. I found the chats very helpful. You can go to the chat room and sit back or talk...there is no judgement...just support and understanding.

                  ** 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. **

                  Comment


                    #10
                    Chats are good if you can think and type long enough. I couldn't.

                    My family s supportive but does not get informed about MS. My son went to medical school and he knows a lot but I think the only way to really learn about MS is on this website.

                    They should have a website for spouses and families of MS people like they do for families of alcoholics. They have AlaNon and Adult Children of Alcoholics.

                    Comment


                      #11
                      There is an area on the message threads for care givers and family. Also a scheduled chat.

                      Best wishes.

                      Comment


                        #12
                        Originally posted by sulphur kennel View Post
                        I want off! this is not the life

                        I want a do over. This is not what I wanted to be doing at this time in my life. When I turned 40 I wanted to be an empty-nester with free weekends instead of having to learn how to deal with MS. I wanted to be free to take my horse up to the Ouachita Mountains and ride for a couple of days at a time. I wanted to be teaching the subject I love. I wanted to be able to travel...I'm sorry but sometimes I have to vent or I will go crazy.
                        No apologies needed – the situation is junk! That said, I have learned to do the things I want to do in a slightly or majorly different way, even if some goals have fallen by the wayside. Maybe eventually you'll find a way to do that ride up into the mountains even if it's not for days at a time, and teach while sitting down (totally possible, right?)

                        I get that it's not how we pictured it, and I think you have every right to grieve that loss first. I'm betting that you're going to get back up into the saddle sooner rather than later, though, and we will all be here to cheer you on!

                        Comment


                          #13
                          I got to ride!

                          I have ridden my horse for 2 days in a row. Tomorrow is steroids so no riding but maybe again later in the week. I feel like I can see the light even if it is just barely showing itself.

                          Wednesday is a visit with a lawyer about a school matter where I sub some. Maybe by the end of this week I can do a little more riding. They say that the outside of a horse is good for the inside of a (wo)man.
                          All sunsets are beautiful, but the most amazing sunsets have a few clouds.

                          Comment


                            #14
                            Originally posted by sulphur kennel View Post
                            I take steroids every month and my hubby actually gets how I feel after them. He just doesn't get the rest of the month. I have tried to get him to go with me to the Dr. but he hasn't been with me since the first couple of appointments back in '07...It would help if my husband could just let me vent without getting mad because I didn't clean the kitchen last night.
                            Oooooooooh, sounds like Hubby needs to live with a Messy Kitchen more often. I'd do my best to "educate" him about Wives Going On Strike. Yup, the minute he pulled a pout on me because I was too fatigued to clean a kitchen, I'd find a lot more stuff to not do on top of that. What a maroon! What a schmuck!

                            2007 was then. This (2015) is now. MS mutates. Tell him he's not getting any younger or smarter, and that he's losing the opportunity to keep his marriage strong. He's stonewalling you about going to appointments because he thinks if he doesn't hear something negative, he won't have to deal with it. A word to the wise: He is laying the groundwork for resentment from you and it may be retaliation from him for a perceived slight on your part. I'd ask him what he is mad about, and if it's anything you've done to him that you can try to fix. If he says there is nothing wrong, then ask him why he doesn't listen to you about things you think are important. Ask him what things he talks to you about that he might be willing to shut up about from now on so you don't have to expend any energy on him either. Maybe not worded so bluntly, but then...say it however you want. Theodore Roosevelt-style diplomacy: Speak softly and carry a big stick...or, just flat out say stuff you feel like saying and mean it. Your mileage may vary depending on your leverage.

                            Comment

                            Working...
                            X