Announcement

Collapse
No announcement yet.

Progression: How did I get here?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Progression: How did I get here?

    Something as simple as renewing my AAA card, shocked me as to how "far I've progressed" over these last 18 years! When I became a AAA card member, I was in my thirties, just got promoted at work and started grad school at night.

    Eighteen years later, I'm on SSDI. I've "de-escalated" to now having to shower 'the day before' I have an "outing" (doctor appointment, grocery shopping, etc.). Bascially living the life of a "hermit" as my fatigue keeps me a prisoner.

    "You look so good" (ouch) "You're lazy" (ouch) Why don't folks get it 25 years after my MS dx. And, why don't I get it either? Denial, denial, denial. . .as reality smacks me in the face!

    Time to start plotting a smarter course, I suppose? How can I break my MS fatigue stranglehold?
    Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

    #2
    I am sure you are asking a question many have asked. Also on disability with fatigue being a big contributor to it.

    I am assuming you have regular blood work to make sure no deficiencies or other health factors.

    I did get benefit from provigil for awhile. Have you tried any Rx for fatigue?

    For me, once I no longer worked, it enabled me to manage fatigue a little better. There are studies that say exercise is one of the best remedies for MS fatigue. It is a catch-22, how to exercise when so fatigued. I started small and gradually built up endurance walking. That said, there are days that I start out and know that no matter how hard I try, I need to keep it short.

    I haven't found it yet, but remember reading an article that talked about some fatigue caused by the brain working harder to communicate around the damage. They did some repetitive movements to try to encourage the brain to find a new path around the damage (neuroplasticity) and in time, fatigue lessened.

    Other than that, they recommend all the normal things for good sleep: reduced anxiety and stress, treat depression, treat insomnia, limit day time napping if you wake at night, eat healthy, limit caffeine, reduce screen time at least an hour before bed, etc...

    I guess the thought is that eliminate any contributions factors that may exacerbate MS fatigue.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      I relate to you

      Originally posted by dm0329 View Post
      Something as simple as renewing my AAA card, shocked me as to how "far I've progressed" over these last 18 years! When I became a AAA card member, I was in my thirties, just got promoted at work and started grad school at night.

      Eighteen years later, I'm on SSDI. I've "de-escalated" to now having to shower 'the day before' I have an "outing" (doctor appointment, grocery shopping, etc.). Bascially living the life of a "hermit" as my fatigue keeps me a prisoner.

      "You look so good" (ouch) "You're lazy" (ouch) Why don't folks get it 25 years after my MS dx. And, why don't I get it either? Denial, denial, denial. . .as reality smacks me in the face!

      Time to start plotting a smarter course, I suppose? How can I break my MS fatigue stranglehold?
      Hi dmo329
      Relate to you and totally I understand you and gone through same sequence oVer 22 years
      I don’t believe how did I got here

      I am taking modafinil for fatigue and it’s helpful to some extent

      I can judge when I run out and do not take the pill one or two days

      I hope you can manage the fatigue too

      Comment

      Working...
      X