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Reality Check Time ... just struggling a little I guess

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    Reality Check Time ... just struggling a little I guess

    I'm sure most of you experience this: an unexpected reality check. I'm such a laid back person that I forget how much I'm declining, but sometimes reality hits me in the face and it causes me to struggle some.

    Before all this [assumed] MeSs started really hindering me, I was very fit and active. So capable. I've been steadily progressing, but this last year it seems I've been progressing quicker. While I've been using a cane once in a while for the last 3 years or more, this past year I've really been depending on it regularly, as well as the scooter carts at Sam's and such. Today I thought I'd be ok with my cane, walking slow around the flea market. I always walk slow, but in just a few minutes I walked slower and slower. I only made it through about 1/3 of the store (walking slow and with a cane for about 15 minutes) before I had to sit down. I was at this same store several months ago and was able to get around the whole thing, walking slow and taking a few breaks. I was tired afterwards, but I still made it.

    Today after only about 5 minutes of walking slow my right leg dragged more and more. After about 10 minutes total, I knew I had to sit down soon. And then I knew if I didn't sit down right now I'd fall down. In my head, with each step, I was thinking, "Don't fall. Don't fall. Don't fall. Don't fall." I had to sit there for about a half hour before I could make it back to the car, holding on to my friend for support. And I mean holding on. Thankfully he's twice my size and super strong.

    Should I have used a walker? I'm still learning. I'm thinking a buggy scooter thing would have been more appropriate for the size of the place, but I might have done better with a walker?? I'm in the process of picking one out. I like one on Sam's online and am ordering it now. I've also had suggestions on here for a 3-wheel rollator that's easier to get around the apartment with. I'll order that rom Amazon.

    But this is me. How is this my reality? I was watching 75 year olds walk past with no issues. I'm 42, thin, and LOOK like I should be healthy. Sitting there with my cane, thankful I made it to the bench in time. No longer able to cook for friends and family. No longer able to take care of my farm animals except for minimal easy jobs when I'm able. No longer able to take walks or go hiking. I miss hiking so much!! That's been long gone. The last "hike" I attempted was on a flat trail with a cane and a friend to lend an arm as needed. We didn't get that far and I almost fell several times because of rocks and other uneven surfaces. That was about 3 years ago.

    I do not feel sorry for myself. I have always taken this in stride, and that's been part of my problem. I'm just too laid back. I've always had a 'suck it up and drive on' attitude. "Shut up and be happy." It took me several months of dealing with all sorts of things that 'normal' people would have went to the emergency room for several times over before I finally went to a doctor. I just went through it. [looking back, if this is MS, I assume they were all pseudo exacerbations brought on by simply not knowing how to let things go, rest, not stress out, etc. After a few years of learning how to adjust, my body kept declining but stopped freaking out randomly.) I do not like doctors. Never have. So it wasn't until a good friend looked at me and said, "YOU NEED TO GO TO THE DOCTOR!!!" that I finally went. But, because of how I am, I gave up all too soon and never followed through. All the tests, poking, prodding, drug recommendations, all the different doctors ... it was just too much for me at the time.

    Anyway, I'm just tired. I had plans for my life. I am doing good at making adjustments (with the help of my loved ones), but still, every now and again reality really hits me. This is me. I am so far from being who I used to be that that person does not even exist any more. How is that even possible?

    Can you relate???? I'm sure you can.

    I am praying I get approved for medicaid for the disabled so I can go straight to an MS specialist in St. Louis. No more messing around. I am 100% committed to getting to the bottom of this. I already have the referral and have been speaking to the nurse there. They have my records. My friend is 100% committed to carting me around no matter how many times we have to take the 4 hour drive to St. Louis. (8 hours total) Things are all in order. Now I just need the approval. Maybe you all can join me in prayer that things will go through. But, I do have a back up plan if I do not get approved for the medicaid for disabled folks: I'll just go back to the original neurologist in Columbia, MO. They do an income-based fee and my payment was super cheap and affordable for me.

    Anyway. Thanks for listening.

    Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
    Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
    EDSS of 5.5, sometimes 6.0

    #2
    Totally relate.....

    I also use to love to hike & the outdoors.
    But 10 yrs into my diagnosis now hiking is out, & like you just navigating thru a store is a struggle. I send my husband with a list of what to get....& stay out of the stores.

    As my fatigue & balance worsen there are fewer things I can do.
    My list keeps getting shorter.

    Good luck to you getting in to the MD!
    Tl-Tr3
    DX'07 MS- on Tysabri-

    Comment


      #3
      It sure is a tough cross to bear. But bear it we must. We can never be the people we use to be. We have to change and become new ones. And all our ď lessons ď will make us smarter , and better. More compassionate and caring. We will make it through.
      It was one agains't 2.5million toughest one we ever fought.

      Comment


        #4
        Ahhh Yes....

        iis, I feel ya on the whole fatigue thing and the ( I used to...) stuff.

        I use the scooters anytime I can when I go to stores, I always plan my days carefully so that I can use any extra energy and strength for the important things I wish to accomplish each day.... it took me awhile to accept this but theres not much looking back now... its like just accept it and move o

        I have a Jazzy scooter if I need it ( still stubborn though) I prefer 2 canes over a rollator 4 years ago I could bicycle 10 miles easily, hike where ever I wanted and had an abundance of strength ( was also just prior to diag of ppms ). Now I scoff at the idea of walking 50 feet!!! If I could go back 10 years I would have kept up better on continuous core strengthening exercises and yoga! Both very useful tools in being able to walk.... its harder to do now, but it certainly helps.

        I hope you get the medical benifits you deserve and need!! thoughts and prayers are with you!! I dont need to ramble on about our country's medical sham.. I mean system, However I hope you find a neuro that specializes in ms

        Good luck and god bless

        Rob

        Comment


          #5
          Originally posted by ppmsichshize View Post
          Now I scoff at the idea of walking 50 feet!!! If I could go back 10 years I would have kept up better on continuous core strengthening exercises and yoga! Both very useful tools in being able to walk.... its harder to do now, but it certainly helps.
          Boy, that's the truth. It's amazing how such a short distance can feel like an eternity and cause you to have to rest all day, or longer.

          As for yoga and such ... I was a yoga pro before all of this started happening, and was participating in upper level classes, helping the instructor demonstrate, and so on. Upon noticing initial issues, I could still do yoga for about 3 or 4 years, but I had to keep altering things. Now (7 years later???) I'm happy to just get through 5 minutes of modified stretching each morning. I miss the challenge, but oh well. I do my best.

          I used to walk about 4 miles every day. Each morning I'd bring one child with me (alternating between my children so a different one was with me each morning) and we'd walk the same route. The very first part of the walk was a massive, steep, long hill. I could run up it if I wanted to. No problem. But, After a few years of living in that particular area and walking that same route, I began to notice I was getting really tired quickly (especially my right leg/foot) and finding it increasingly difficult to walk up that hill. Looking back now, I remember cutting my walk short and altering the route to miss the hill altogether. I'm not sure what I was thinking. I mean, why didn't it cause me to stop and wonder what was wrong?

          I don't know. I say I'm doing ok, but I can't help but feel a bit of discouragement from time to time. It never lasts because I'm good at being thankful. Life is hard enough already, but it could always be worse, and being ungrateful makes it loads harder.

          Thank you to all who have responded. I just love this forum/website so much.

          Well, another thing - an update I guess. Last night I realized it would be silly of me to start with a whole new neurologist just because I get medical help. Why not just go back to the initial neurologist so she can see how I've progressed?! I really liked her. I looked through my records and found that it's been FOUR YEARS since I've seen her. She's so calm and quiet. She talks slow and simple. She spends a lot of time with me. She is not an MS specialist, but she has one on her team and she always runs everything by him with her MS patients (or, as in my case, with those she suspects have MS). I sent her an email last night ... when I couldn't sleep because of my right leg and foot ... asking her what I needed to do to be seen again. I asked her to please order me all of the tests and scans she thinks I need before I see her, that was my trips will be consolidated (about 4 hours away). That's how we did it before, and they are super quick about getting test results back. Even same-day MRI results.

          [Side track: I remember my last MRI there 4 years ago. I was mentally going through it all in my head last night and realized there's no way I'd be able to walk with my cane (or even my walker) to the MRI scanner. I'll need a wheelchair ride. 4 years ago I walked there without even holding on to my friend's arm.]

          I was honest with her - after going through this for how many years, having some hindsight, and based on the opinions of those who take care of me, it all points to PPMS, and this past year it seems to have really progressed quicker. I asked her to please try to rule it out or confirm it. We'll see.

          And again, thanks for listening.

          Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
          Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
          EDSS of 5.5, sometimes 6.0

          Comment


            #6
            Yes; I can relate to much of what you wrote. Although I've never been terribly active or fit, I used to be healthy.

            These statement resonate with me:
            • I've been steadily progressing, but this last year it seems I've been progressing quicker.
              --I've also begun to use a cane regularly when I leave the house and have begun to use the scooter cart to shop for groceries or shop at Walmart.
            • I only made it through about 1/3 of the store before I had to sit down.
              --I can only walk a block or two, usually, and am unable to finish tasks that require me to be on my feet very long.
            • How is this my reality? I was watching 75 year olds walk past with no issues.
              --Yup.
            • I do not feel sorry for myself. I have always taken this in stride. I've always had a 'suck it up and drive on' attitude. "Shut up and be happy."
              --That's sort of me too.
            • Anyway, I'm just tired. I had plans for my life. I am doing good at making adjustments (with the help of my loved ones), but still, every now and again reality really hits me. This is me. I am so far from being who I used to be that that person does not even exist any more. How is that even possible?
              --Yup. I don't remember, hardly, what life was like when I was "normal", more than 16 years ago.


            I hope you get approved for Medicaid and can see an MS Specialist. I feel like my MS Specialist is so much more knowledgeable about MS than the general neurologist that I used to see.
            ~ 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


              #7
              Originally posted by Mamabug View Post
              I hope you get approved for Medicaid and can see an MS Specialist. I feel like my MS Specialist is so much more knowledgeable about MS than the general neurologist that I used to see.
              I'm so torn about what to do. We decided to just get the ball rolling again with the regular neurologist that is at the hospital that has an excellent assistance program - she always runs things by the MS specialist on her team, so at least I'll have that much. If/when I get approved for Medicaid, we'll decide then to either stay with her, or go to the MS specialist that I have my eye on in another city.

              Thank you!!!! It's so nice to talk to someone. Of course in a way I'm sorry you can relate so much to me, but in another way it's nice

              Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
              Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
              EDSS of 5.5, sometimes 6.0

              Comment


                #8
                Originally posted by jjs View Post
                I'm so torn about what to do. We decided to just get the ball rolling again with the regular neurologist that is at the hospital that has an excellent assistance program - she always runs things by the MS specialist on her team, so at least I'll have that much. If/when I get approved for Medicaid, we'll decide then to either stay with her, or go to the MS specialist that I have my eye on in another city.

                Thank you!!!! It's so nice to talk to someone. Of course in a way I'm sorry you can relate so much to me, but in another way it's nice
                Perhaps your current Neuro can advise you which doc would be in your best interests. I was pleasantly surprised, when I explained to my Neuro, whom I really liked, that I was switching to an MS specialist, that he was very supportive. My MS had somewhat atypical symptoms and, like me, he believed that she would be better able to help me to manage my MS

                In fact, because he believed that he could learn from her, he asked me to have her office forward my records to him. I did that until he retired, about 8 years later.

                If you suspect PPMS, perhaps you also need more specialized care. On the other hand, maybe you are already receiving it, since your neuro consults with a specialist.

                I wish you wisdom as you decide what is best for you.
                ~ 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


                  #9
                  I dunno...

                  I don't know if you are taking any dmd's since you haven't been seeing a Neuro regularly, but they really do stop helping after a while. You might need to try a different one. I just got switched to tysabri from tecfidera.
                  You can't stop washing your feet just because you're afraid you'll fall in the shower.

                  Comment


                    #10
                    Concerning

                    Being newly dx and recovered well Iím still a bit worried about the future. I love 2 hike and still can do it all, but after reading a few posts I see that the disease can progress rather quickly. Iíve had no activity since dx (sept. 2017) on tecfidera and doing everything I can to keep whatever functions I still have (diet, excersize, meditation... etc.) I see some ppl progress quickly but Iím totally stable since last year, hoping I can stay this way for a long time

                    Comment


                      #11
                      Originally posted by Mamabug View Post
                      Perhaps your current Neuro can advise you which doc would be in your best interests. I was pleasantly surprised, when I explained to my Neuro, whom I really liked, that I was switching to an MS specialist, that he was very supportive. My MS had somewhat atypical symptoms and, like me, he believed that she would be better able to help me to manage my MS

                      In fact, because he believed that he could learn from her, he asked me to have her office forward my records to him. I did that until he retired, about 8 years later.

                      If you suspect PPMS, perhaps you also need more specialized care. On the other hand, maybe you are already receiving it, since your neuro consults with a specialist.

                      I wish you wisdom as you decide what is best for you.
                      Thank you what you said was helpful. My general neurologist got back to me today via the patient email and actually suggested I see the MS specialist instead of her, so that took the guess work off my shoulders. I asked her to let me know who, and what to do next.

                      God only knows if and when Medicaid will [might] kick in, so for now I'll just see the MS specialist on her team at the hospital with great financial aid. Hopefully by tomorrow I'll have some solid dates

                      Thanks again!!

                      Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                      Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                      EDSS of 5.5, sometimes 6.0

                      Comment


                        #12
                        Originally posted by alishape View Post
                        I don't know if you are taking any dmd's since you haven't been seeing a Neuro regularly, but they really do stop helping after a while. You might need to try a different one. I just got switched to tysabri from tecfidera.
                        Thank you for the thought! Actually, any kind of med scares me a lot, so I have not taken anything they've offered. I'm not 100% closed to the idea, but for now I'm just not ready to go that route and am not sure if I ever will be.

                        Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                        Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                        EDSS of 5.5, sometimes 6.0

                        Comment


                          #13
                          Originally posted by Ant1981 View Post
                          Being newly dx and recovered well Iím still a bit worried about the future. I love 2 hike and still can do it all, but after reading a few posts I see that the disease can progress rather quickly. Iíve had no activity since dx (sept. 2017) on tecfidera and doing everything I can to keep whatever functions I still have (diet, excersize, meditation... etc.) I see some ppl progress quickly but Iím totally stable since last year, hoping I can stay this way for a long time
                          There are many others so much more eloquent than I at explaining this stuff ... but I'll take a stab at it! I have a good friend with MS. She was dx'd about 25 or more years ago. One relapse back then, and another one within the last 5 years. She bounced back beautifully and does quite well.

                          You just never know. I do believe it is very important to do our best with what we can control, but at the same time take each day as it comes. Don't borrow trouble from the future - especially when you have no idea what the future holds. Stress is by far our biggest enemy ... well, that's my theory any way.


                          Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                          Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                          EDSS of 5.5, sometimes 6.0

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