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    Are you on your own too?

    I think having a mental illness combined with my particular personality resulted in me living day to day with no particular life plan. I was always just focussed on survival. I'm 46 and I'm glad I'm still around. But I'm sitting here in my apt in Santa Cruz and I have to be out in a week and I have to figure out how to get all these things back west. I know I'll figure out a way through this but today feels overwhelming.

    My plan is to move to Denver. I hear there's a large active MS community there and I plan to do whatever it takes to break out of my shell and reach out for support and friendship.

    I don't think being married would make things easier. I think we all know how hard it is to communicate our difficulties to others - to make this sometimes invisible disease more apparent. Do we even want others to know? What would that accomplish?

    But today I feel alone and was wondering if anyone in a similar situation would share a few words. Or anyone who's not technically alone but essentially feels alone and has any words of advice? I must say as hard as the breakdowns and hospitalizations were, having MS is infinitely harder.

    Thanks,
    So

    #2
    Hey Sardi,
    I get you. I am sitting here at almost 2:00 pm in my pjs like usual - watching tv, doing dishes, watching tv, doing more dishes, watching tv, checking my email, etc., etc. I stopped working 13 years ago. I have gotten used to a certain amount of lonliness over the years but it's not like I'm loving it.

    Husband is at work, teenage daughter at school, and now all of a sudden these colleges are soliciting her by email and snail mail ever since she took her PSAT. I will soon be an empty nester and feel very sad about that. I have been sick since she was 3, but she is the reason I get out of bed, try to stay mobile and get out of the house from time to time. I have been able to meet her basic needs, but Super Moms out there have nothing to fear from me. I feel like my DD never really got to know the real me. Just the MS me.

    Soon she will be on her own and the world will really open up to her. I am old and sick. I am more asleep than I am awake. In other words, I am not a whole lot of fun. Soon she will burn some of that pent up energy she's stored all these years and I am glad about that. For anyone who does not know, I had a very handicapped MS Mom who died when I was in elementary school and then a young, uncaring stepmother entered my life less than a year later. I remember age 18 being a jumping off point for the most exciting years of my life. I wish my daughter the same. I know it is time, but wow...I feel like we BOTH missed out on so much life with my illness.

    You don't have to have M.S. to be lonely, but it doesn't help! These endless grey skies in CT aren't helping either!!
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    Comment


      #3
      I'm really sorry you are feeling so down. But honestly, sometimes I think it would be better (for me) if I was alone! I am kind of independent when I can be and I like being left all alone. My husband got sick in September and I have been sole caregiver and babysitter. I absolutely love those few minutes I have in the car alone or grocery shopping.. alone. Life is tough no matter what path we take.

      I know this wasn't any help. Just an observation. I am 66 years old, married for 44 years.
      Marti




      The only cure for insomnia is to get more sleep.

      Comment


        #4
        Originally posted by marti View Post
        I'm really sorry you are feeling so down. But honestly, sometimes I think it would be better (for me) if I was alone! I am kind of independent when I can be and I like being left all alone. My husband got sick in September and I have been sole caregiver and babysitter. I absolutely love those few minutes I have in the car alone or grocery shopping.. alone. Life is tough no matter what path we take.

        I know this wasn't any help. Just an observation. I am 66 years old, married for 44 years.


        I know my reply probably makes me sound selfish. My husband's illness has totally worn me down physically and mentally. He is gaining, but there is still so much I have to do for him. I don't mind doing those things, I'm just so exhausted and all I can see is a dim future. I am 96 pounds and very weak with all my MS symptoms and the various other illnesses I have. I'm so afraid I won't be able to take care of him if things get worse. And they will. He will never be much better. So forgive me.
        Marti




        The only cure for insomnia is to get more sleep.

        Comment


          #5
          Hi,

          I don't think being married would make things easier.
          You are right.
          I am married with 5 kids but some times i literally spend whole days where i don't see or speak to another person (3 of my sons still live at home). I just 'potter' around pacing myself and getting just those essential things done and everyone else does their own thing. I have always been very independent so i don't mind being alone as a rule but I have said to my husband in the past that it feels very depressing to 'be alone' and lonely in a crowded room surrounded by 'loved ones'.

          I think we all know how hard it is to communicate our difficulties to others - to make this sometimes invisible disease more apparent. Do we even want others to know? What would that accomplish?

          After roughly 30 yrs of just my husband and i knowing about my issues - we 'came out' and gradually started letting others know that i had ms.
          One of my children was 'put out' that they had been excluded from this knowledge until they saw first hand how differently some people can treat you when they know. My jury is still out whether or not others knowing has had any positive outcome.

          Tawanda
          Hey Sardi,
          I get you. I am sitting here at almost 2:00 pm in my pjs like usual - watching tv, doing dishes, watching tv, doing more dishes, watching tv, checking my email, etc., etc. I stopped working 13 years ago. I have gotten used to a certain amount of lonliness over the years but it's not like I'm loving it.

          Husband is at work, teenage daughter at school, and now all of a sudden these colleges are soliciting her by email and snail mail ever since she took her PSAT. I will soon be an empty nester and feel very sad about that. I have been sick since she was 3, but she is the reason I get out of bed, try to stay mobile and get out of the house from time to time. I have been able to meet her basic needs, but Super Moms out there have nothing to fear from me. I feel like my DD never really got to know the real me. Just the MS me.

          Soon she will be on her own and the world will really open up to her. I am old and sick. I am more asleep than I am awake. In other words, I am not a whole lot of fun. Soon she will burn some of that pent up energy she's stored all these years and I am glad about that. For anyone who does not know, I had a very handicapped MS Mom who died when I was in elementary school and then a young, uncaring stepmother entered my life less than a year later. I remember age 18 being a jumping off point for the most exciting years of my life. I wish my daughter the same. I know it is time, but wow...I feel like we BOTH missed out on so much life with my illness.

          You don't have to have M.S. to be lonely, but it doesn't help! These endless grey skies in CT aren't helping either!!

          Yes Yes and Yes!!! It makes it harder when the main reason for getting up in the morning doesn't need you any more.

          But today I feel alone and was wondering if anyone in a similar situation would share a few words. Or anyone who's not technically alone but essentially feels alone and has any words of advice? I must say as hard as the breakdowns and hospitalizations were, having MS is infinitely harder.

          My plan is to move to Denver. I hear there's a large active MS community there and I plan to do whatever it takes to break out of my shell and reach out for support and friendship.

          I think you have answered your own question Tawanda.
          I know that the physical 'moving' is overwhelmening and your probably unsure if you can genuinly 'break out' of your rut and achieve your wish for yourself. I have tried multiple times to do this and it never seems to reach the silver lining objective that i'd hoped , but i mostly think that is because i'm not the only one being considered or required to change, my whole family is in a rut. So i think your more likely to achieve contentment with any changes you are trying to make because you are on your own.

          So try and focus on this positive and even if you have a couple of stressful weeks , this is just the first step to change, you have a plan, you can collapse from exhaustion after you get to Denver and rest and unpack slowly.
          Continue to 'focus on survival' and don't rush in and expect to much from yourself or others, take it slow (after you move) and try and be "content" with any small achievements you set yourself. I believe you'er at an age where we transition from trying to achieve the allusive "happiness" and learn to accept contentment. I'm 49.

          So thats my advice. i hope you find it positive and helpful , please let us know how you get on.

          Comment


            #6
            Hey Sardi!

            I am sorry you are feeling blue. 😢

            I am by myself. Well, I have a toy poodle and two parents who I take care of alot. But I have spent time on both sides of the fence. When I was married, I think I was more lonely than now. My marriage was not a good one. They say the grass is always greener....

            Being single, I have a lot of friends...really good friends. I also have a lot of indoor hobbies, quilting, crafting, journaling, making things for the home etc...

            When you get to your new location try to really make an effort to find friends. Start with a local support group. Host a weekly game night at your home. Friendships require a lot of time...but they are worth it. My friends are awesome and they are there to always pick me up.

            Good luck on your move...you are right, you will find a way! 🌷🌷🌷
            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


              #7
              Oh thanks all! For your observations and insights.

              Marti - you are not selfish at all! I have experiences as a caregiver and I'm sure everyone here agrees that it can get so tiring. I've got a lot of hobbies/projects and I prefer to spend most of my time doing my own thing. I hope you can get some extra help, maybe just for a time. It's not selfish at all.

              I'm waiting til I get settled to finally get a cat. Having a pet means having at least one joyous smile a day. I love maincoons.

              On another note I saw a Tedtalk that explains why we irrationally hold onto things and I totally had an epiphany so packing has gotten a lot easier! I also follow @theminimalists so that started it all.

              Comment


                #8
                It is no fun being alone and at some point with this sucker it's not possible, but it's quite hard being with someone.

                My parents, my partner, my friends, my cleaning woman - they all care, and I still feel so guilty.

                I pretend nothing is wrong, but at some point you can't fake it anymore.

                Then they are hurt because you won't let them help...

                Comment


                  #9
                  ThinkImJob - btw I love that name. Sometimes I use martyrdumb.

                  I struggle with guilt and I read something one time which I try to remember (try being the operative word) that guilt exists simply to instigate some form of corrective action if it exists. It's not meant to be a pervasive feeling. I'm sure this is not news although implementing is hard. I can only speak for myself but I do believe that taking care of or helping someone taps into our maternal instincts and thus instills a sense of satisfaction. Maybe try an experiment and allow help and see the person's reaction. I know from your posts how you have a way with words and writing a note to thank someone or simply make them laugh from one of your astute observations might help with any uncomfortable feelings.

                  Concerning venting - which is my specialty - I've learned from having bipolar over and over and over again that moods always change so if I'm in freakout mode I always remind the unfortunate listener that this never lasts but it helps to talk it out, then when I feel better I call the person to say "see?"

                  Wishing the best to you and all of us!

                  Comment


                    #10
                    Hi Sardi,
                    Just thought I'd check, how are things going with the move?
                    You said you had to be out in a week so that's today or tomorrow?
                    Hope you have time to check in.
                    Look forward to hearing from you.

                    Comment


                      #11
                      Thank you for asking! It was tough but I made it to Denver! I learned a lot on this trip. Looking back I made it harder than I needed to by not asking for more help. But our small family is overwhelmed with various issues, it's been quite a year for all of us. I drove a 15 ft uhaul truck with my car in tow! It was too overwhelming and I developed painful symptoms and decided to rest for 2 days in Nevada but at least I gave myself the rest I needed. That was the biggest lesson. Logistically it was hard but even with all the glitches I eventually made it.

                      The drive was beautiful. A nice rancher in Nevada pulled me out when I got stuck in the snow. ) Wyoming was just indescribable - even with the blizzard and black ice! And right now I'm looking out my hotel window at the rockies. :-) It's a beautiful day but I'm inside resting and perfectly fine with that. There's still so much to do but that's ok. I had some lows but eventually regrouped and kept going and learned I'm tougher and more resilient than I thought... but I'm NEVER doing it again.

                      Thanks again for the caring and support. I'm going back to sleep now.

                      Comment


                        #12
                        Congrats. and welcome home.
                        You, me, everyone of us - tough cookies when we have a mind to be and can take on anything.
                        It's holding on to this attitude that's the hardest sometimes.
                        I wish you well with your future hopes and look forward to any update you have the energy to post.
                        For now - hope you enjoyed a good sleep and continue to pace yourself with settling in the interim.

                        Comment


                          #13
                          Glad you made it! Your drive sounds both exciting and terrifying. (snow, black ice, snow drifts) yikes!
                          But that view! I hope your hotel lobby has a fireplace. Are you following a plan or winging it?

                          Best of luck as you move forward.

                          Comment


                            #14
                            Thanks for the positive wishes - I'm currently back in St. Louis. I just dropped the furniture in a storage in CO. I feel like my decisions last year were made with some desperation and I want to take my time and make a smart decision that serves me for the long term. Ideas are welcome! I'm really not happy with how my life is going. I feel like I could still work. I used to teach Math - I tutored students in Differential Equations and Calc III! That's all in the past but I want to do something. Even data entry. I'm somewhat fluent in a few programming languages. My big issues are dealing with stress and emotional regulation and fatigue - cog fat is big - so it can't be too brain intensive. And trying to explain my lapses in work. I feel like volunteering is a good way to bypass the interview process and I could show my skills and get my confidence up. I would love to work in a library.

                            I'd like to live near the MS society in Denver so I'll be looking near there.

                            Right now I've had a headache for three days and burning feet and burning wrists but I'm thinking all I need is some rest for a while.

                            Yes we are definitely all tough cookies - I hope everyone gets the opportunity to know they can exceed their expectations. And yes holding onto that feeling is a challenge too.

                            Take care all

                            Comment


                              #15
                              Wow, sardi!! Congrats

                              What a huge achievement to pack up and move through snow country and all. It's good you're "stepping back" a bit to access your situation and proceed slowly and deliberately with what comes next. Sometimes when we step back from our lives and let things just be, we can often times be surprised with serendipitous outcomes! And stepping back allows us to rest and recoup from what has been.

                              You're a brave woman and wishing you the best on this next stage.
                              1st sx '89 Dx '99 w/RRMS - SP since 2010
                              Administrator Message Boards/Moderator

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