Just need to Vent

    • Anonymous
      August 28, 2010 at 5:31 pm

      I am just plain tired of being tired. i am tired of not having control of my emotions. I am tired of falling asleep when company is over. I am tired of not being able to do things with my partner. I am just plain tired of tired this life I have been dealt.

      I jjust want to have my life back, I just want to be able to walk again, remember what I have said to people or to be able to remember what I have read in a book or newspaper.

      I would love to be able to work again, yes i said be able to work again, I am tired of being poor, making just enough money that I cant get any help from my state government.

      I am just tired of being stuck in my apartment while the rest of the world has a summer.

      I am tired of sweating all day and night, I am tired of not being able to drive and having plan everything out for the STAR bus to pick me up days a head of time.

      I just want my life back.

      I am not giving up and I am not giving into this disease, I am just tired of it and the effects it has had on mine and my familyies life.

      I am tired of not being able to enjoy things I use to eat, do, watch.

      I just want my life back.

    • Anonymous
      August 28, 2010 at 7:24 pm

      I understand and feel the same way. But I am not giving up and continue to look for a cure. I too want to be able to live. Really live ands work again

    • Anonymous
      August 29, 2010 at 7:55 pm

      Hey brother
      I am there as well. Holding onto a hope that we can stop the progress of this disease
      I can not remember what normal is!
      I hold onto my job through pure stubbornness
      My heart goes out to you as I am sure it does to everyone here

      Stay strong my friend

    • Lori222
      August 29, 2010 at 9:00 pm

      i hear you and agree!!! but keep fighting–keep researching and bring that research with you to your dr’s, We are just one of the many patients they see in a day–so take advantage of that time–have a plan of things you researched and wonder if you should try–get ideas from others here. I find that at least with a plan of action and knowing if that doesnt work –you’ll go onto the next plan. that gives HOPE and hope and determination keep us going. hey— but it’s still okay to vent and wonder why in the world we had to get this crap!!

    • Anonymous
      August 31, 2010 at 11:01 pm

      Jason,

      I am glad you hate all of those things. By this time next year the list will be longer.

      I still hate the fact that I cannot do the things that you list. I have had a few more years to make a longer list than yours.

      You need to make the list

      You need to get mad.

      That is one of the ways to see the way through to being able to deal with CIDP and whatever it leaves with you.

      I have had CIDP for a long time, and been here on the Forum for a long time. I have seen a lot of people come and go. Some stay. CIDP is hard on people. That is one thing I have learned from being here so long. The hardest time is probably the time you are in right now. The time of “not knowing”

      You don’t know how hard it will hit you.
      You don’t know how much it will take from you.
      You don’t know how much it will disable you.
      You don’t know how your friends will understand (or not).
      You don’t know if you can do your job.
      You don’t know how you can pay your bills.
      You don’t know if your spouse will still love you.
      You don’t know how you can be a good parent.
      You don’t know
      You don’t know
      You don’t know.

      If you weren’t pissed off, I would wonder if you were really alive, my friend.
      I have walked in your shoes.
      But, years later I am still walking.
      I just look at life a little differently
      I look at my health a lot differently
      I have come to terms with some things
      And dismissed some others that I could not change.
      I still have my family, my wife, and love
      I can live with that.
      The rest can go to *%@#

      Dick S