things they don’t tell you about RA

  • that it hurts, inside and out; the pain will always be there.
  • that it is a life sentence that’ll change your life forever.
  • that any respite will not last long enough.
  • that it is a struggle and an unrelenting fight that you will never win.
  • that it is hard to live with it.
  • that full acceptance of it can takes years (even decades).
  • that you’ll spend a lot of time and money because of it.
  • that money can possibly buy you a remission (if i dare say).
  • that you won’t be able to cope at times.
  • that there’ll be good days and bad, terrible ones too.
  • that there’ll be tears and sniffles sometimes.
  • that even medications are not be the be all end all.
  • that physical therapy and splints may not help.
  • that anger and frustration will always be inevitable. 
  • that embarrassment and shame are unavoidable.
  • that it is difficult to ask for help.
  • that it is hard to admit that you’re in pain.
  • that it is even harder to have others believe that you’re in real pain.
  • that you’ll get disillusioned with pain management.
  • that sometimes it’s easier to go with the flow, or just breathe.
  • that your job, whatever it is, is ‘incompatible’ with it.
  • that you won’t know what tomorrow holds.
  • that its chronicity is what that wears you down the most.

i’m in pain and tired. i’m taking my pills faithfully and wearing my splints/supports almost everyday. i want to sleep it away but it doesn’t work that way. i’m waking up to and going to sleep with pain and stiffness. i’m working every gruelling shift with flares. it’s affecting every aspect of my life- physically, mentally and emotionally. i am totally disillusioned, and at my wits’ end. maybe steroids are the way to go afterall.

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