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    #16
    Suzanne--
    Most of my friends "disappeared" after my diagnosis too! What's with that? Then, a few months after my diagnosis, I wound up very sick with an emergency colostomy! I fyou think MS scares people away, try a colostomy! A year after that, I had more surgery to have my colostomy reversed as well as some other stuff. Now I have no local friends!

    And people just don't get it. My husband saw me on the forums, and said why do you do this? I would think you would want to NOT think about MS. He doesn't understand that it is ALWAYS on my mind, and I ALWAYS feel it.

    MS can be very lonely.

    Comment


      #17
      I felt the same way!I recommend that if they have 20 or 30 min to spare that you have them watch a video on MS fatigue so that way if they won't believe you they sure will believe the others that describe the way they feel...it worked for me so try it out who knows they might even shed a tear!

      Comment


        #18
        [QUOTE=lemstar;1317395]Suzanne--
        Most of my friends "disappeared" after my diagnosis too! What's with that? Then, a few months after my diagnosis, I wound up very sick with an emergency colostomy! I fyou think MS scares people away, try a colostomy! A year after that, I had more surgery to have my colostomy reversed as well as some other stuff. Now I have no local friends

        I know this may sound cliche', but I beleive it's true, the friend who disappeared were not what I would call "true" friends. There were people in my life that I was so sure would always be there-- people I'd been to the wall for, and trusted them with my life. The Transverse Melytis I was hospitalized for was very serious; and I was told I probably would not walk again. Later, I was told that had it not stopped spreading, I would've ended up on a respirator. There is permanent damage to my spinal cord, so it's hard for me to differentiate between that and the ms.

        My point is that my closest friends are no where to be found. The person I am closest to now, is not who I was closest to pre ms. Yes we were friends, I just didn't know that we were Best Friends. She has been in my corner since it all started; and she tells me, often, how much I have done for her.

        I know it's hard sweetie. I cried rivers b/c my friends were surrogate family for me. I stopped crying about that, and rarely think about it now.

        I saw this documentary on PBS about a man with ALS- talk about inspirational. He said something I'll never forget; he metaphorically spoke of life as being a theatre, with a limited # of seats, and to "[I]be very careful and selective about who sits on the front row." I am oh so careful now.

        What you are dealing with is heartbreaking. Please, find people that you can trust and who are not cruel to you... they are out there. I promise. I am thinking of you and sending you positive energy.

        Love and Light... Hugs
        Shalom,
        Suzanne
        You never fail, until you stop trying__Albert Einstein

        Comment


          #19
          suzanne--thanks. i realized when they all disappeared that they weren't "true friends". That was okay with me--they were people to discuss kids and husbands wtih, people to have lunch with, people to chat with casually. And they are all gone. I am way less interested in them now anyway, but it is a lonely place. The bottom line is that very few people (maybe no one?) reallyknows what this is like for me, except others with MS.

          Comment


            #20
            @Cosake....I copied and pasted your post into a word doc and I am putting one on my fridge for my DH (not so much dear) but that's a whole different story And I am sending one to my mother (grrrrrrr). And I am sending one to anyone else I can think of that has told me to pick myself up, stop being lazy, stop thinking about it, get over it, go to work you'll feel better, why did you nap?, would you hurry up, why are you walking like that, you knew where it was and you were just faking that you didn't know where it was cuz we had company over, someday I'd like to hear that you are feeling GREAT, maybe if you got up and did something you wouldn't feel so bad, and COUNTLESS other comments! Thank you!!!

            Don't forget that it takes all I am to care for my 3 children and be a housewife, keeping a clean house and making sure my girls have all they need. UGH...I need a vacation from my life for a weekend!!! But, of course, with all the money spent for co-pays for PT, Dr appts, gas, I couldn't possibly use HIS money for a weekend away could I?? Especially since it's already an issue that I spend HIS money for Dr appts. Grrrrr....NOPE.
            Love, Laugh, Live...in this order
            Dx'd 2-24-11 - Baclofen 60 mg/day 5-11, LDN 4.5 mg/day 9-24-11, Cymbalta 60mg/day for pain 11-11

            Comment


              #21
              Originally posted by LullabyJD View Post
              Funny. You don't look stupid. But then, I suppose looks can be deceiving, can't they?

              That's my stock response now.
              I used to use that one but now I have opted for a more dirrect reply that rymes with; Truck Cough!

              Comment


                #22
                cosake- i also copied what you wrote into a word doc and printed it out. I gave it to my boss who keeps comparing me to his wife. (oh my wife's feet hurt too, she has brain lesions too, yea she's tired alot) It's not that i don't feel for his wife i just find it annoying to be compared to someone who does not have MS or anything like it. Today was a really bad day for me, i could hardly walk and was in so much pain. He actually let me go home early. I think it helped him realize what i'm actually going through and how much it takes to go to work everyday and put a smile on my face.

                My bf thinks i'm focusing too much on my MS and just freaking myself out when something happens. Last i checked your foot isn't supposed to feel like someone poured boiling hot oil all over it and your legs aren't supposed to feel like you ran 10 miles when you wake up everyday. Ugh, sorry had to vent a bit.

                Comment


                  #23
                  Originally posted by cosake View Post
                  Here is something I picked up from a previous message post to give to people to help them understand "How MS Feels".

                  When We Say We Can't do Something Because We don't feel Well, put yourself in Our Shoes By Using The Examples of our Symptoms Below...

                  - Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

                  - Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

                  - Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

                  - Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

                  - TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

                  - Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

                  - Tingling: Stick your finger in an electrical socket - preferably wet.

                  - Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

                  - Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

                  - Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

                  - Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

                  - Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

                  - Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
                  one...Bzzzzzzzzzzzz zzzzzz

                  - Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

                  - Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

                  - Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
                  allow them to periodically crawl around throughout the day, heck all day would be good too.

                  - Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensitive area.

                  - Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
                  several walks around the deck with your eyes closed.

                  - Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

                  - Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

                  - Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

                  - Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

                  - Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

                  - Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

                  - Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

                  - Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

                  - Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

                  - Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

                  - Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

                  - Swallowing: Try swallowing the hottest chili pepper you can find.

                  - Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35 outside and 65 inside. Light a fire for the fireplace and then get into it. Once you have reached about 110 tell me how you feel, even a person
                  without MS would feel bad, now add all of the above symptoms - welcome to our world.

                  Then Finally...

                  After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.
                  Cosake, I copied this and sent it to my entire family. My sister doesn't seem to get it.
                  Diagnosis: May, 2008
                  Avonex, Copaxone, Tysabri starting 8/17/11

                  Comment


                    #24
                    Originally posted by Sdickerson1 View Post
                    What gets me is being compared to people who have a less aggressive form of MS and who are more functional than I am.... I even got this from someone with MS!!!! ( you can't have MS! I'm never that sick!). Congratulations!!!!!!
                    My sister does that all the time.
                    Diagnosis: May, 2008
                    Avonex, Copaxone, Tysabri starting 8/17/11

                    Comment


                      #25
                      Originally posted by cosake View Post
                      Here is something I picked up from a previous message post to give to people to help them understand "How MS Feels".

                      When We Say We Can't do Something Because We don't feel Well, put yourself in Our Shoes By Using The Examples of our Symptoms Below...

                      - Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

                      - Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

                      - Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

                      - Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

                      - TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

                      - Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

                      - Tingling: Stick your finger in an electrical socket - preferably wet.

                      - Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

                      - Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

                      - Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

                      - Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

                      - Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

                      - Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
                      one...Bzzzzzzzzzzzz zzzzzz

                      - Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

                      - Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

                      - Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
                      allow them to periodically crawl around throughout the day, heck all day would be good too.

                      - Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensitive area.

                      - Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
                      several walks around the deck with your eyes closed.

                      - Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

                      - Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

                      - Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

                      - Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

                      - Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

                      - Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

                      - Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

                      - Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

                      - Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

                      - Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

                      - Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

                      - Swallowing: Try swallowing the hottest chili pepper you can find.

                      - Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35 outside and 65 inside. Light a fire for the fireplace and then get into it. Once you have reached about 110 tell me how you feel, even a person
                      without MS would feel bad, now add all of the above symptoms - welcome to our world.

                      Then Finally...

                      After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.
                      Post of the century.

                      Comment


                        #26
                        You don't have to bother explaining yourself to everyone. If you go to work and most absences you have is because of your illness, then your company is the one really worth your explanation and certification or proof that you were really sick. Workers often fake sick to avoid going to work. Paying the bills is extremely hard if you cannot get back to work. Good thing, you can get a payday advance loan to help pay for anything until you have fully recovered and can return to work.

                        Comment


                          #27
                          Wow Cosake! Thanks for posting this!

                          I've also saved this!
                          When I can laugh at my experiences, I own them and they don't own me!

                          Comment


                            #28
                            Here is the direct link to the "spoon theory":

                            http://www.butyoudontlooksick.com/wp...-spoon-theory/

                            Comment


                              #29
                              The other day my mom said," I think you could really do more than what you do!" My mouth dropped wide open. I am on welfare waiting for disability to get approved and my primary care doc thinks there is nothing wrong with me even though one doctor has already told him that he is 98% sure I have MS. So my primary doc wont exempt me from welfare to work program. I've been waiting for 3 months to get to the neurologist who will help me but they keep screwing up my referral.

                              Anyways because of this I have to go to school full-time or lose my only means of paying rent. I was let go from two great jobs last year due to my disability. So after I drive 1 hour to and 1 hour from school and have to walk the campus and attend tutoring because my memory is almost non-existant I have no energy left, I hurt, I cry, I'm done!!

                              I have so many intolerable symptoms and I resent people making me do things that hurt me (welfare) and I resent people thinking I should be able to do more. I have driven off the road numerous times because of vision issues but if I don't go to school, me and my daughter are homeless. I hate that for some reason when You are disabled these people that are suppose to help just make it harder on you. So frustrating

                              Comment


                                #30
                                I love the Spoon Theory. It's such an easy understandable way to get the point across and can be used by people with all different "invisible" diseases. All the ways by the other poster to simulate the symptoms that MS patients go through is amazing. I'd like to have each of my kids and husband try this so they actually see.

                                Comment

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