Sunday, 4 August 2013

Sleepydust video

Just quickly wanted to send this link from my phone whilst lying in bed resting. I'm so fortunate that I am no longer completely housebound and bedbound, and I hold on to every bit of hope that I can grab. If you have a moment please watch this link as it says so much!

Warm wishes


  1. Bless you Hannapat this is an awful condition which is so misunderstood by many yet causes indescribable pain, anxiety and disruption to everyday life. In my previous life as a counsellor I was party to the despair of the person with this and their whole family, they were all trapped in it. My heart always went out to them and yet I could do nothing to help. May a breakthrough be found one day - Hannapat it is a small world, this condition is one which I would always donate money to, it deserves to be noticed and more research done on it. A big virtual hug to you
    Lots of love

  2. I'm so glad you are feeling well enough to get out and about even if you do need to rest regularly. It's ironic that its only really when our bodies stop working that we appreciate what we had! Keep well sweetheart :) x

  3. It breaks my heart to read this! Ek wens ek kon eerder in die 'gap' gestaan het vir jou dat jy dit gespaar kon wees. Maar jy is al soveel beter as wat jy was en ons bly vas glo dat jy nog heeltemal, ten volle, genees sal word. So baie lief vir jou! xxxx

  4. Thanks for sharing this video. M.E is such a difficult illness to understand, because we can be out & upright one minute, & suffering terribly the next minute. The public don't get to see all of those hours spent resting so we can get out for a short while. Keep holding onto hope my sweet, one day you may be mountain biking again. I count myself one of the lucky ones to be able to leave my bed & join the real world every now & then! Thinking of you. Xx

  5. We have a very close family friend who suffers from this, I feel for you and send my heartfelt support. May you feel much better very soon! Cxxxx

  6. I can really understand what you are going through Hannapat. I myself have fibromyalgia which is linked to ME. I was diagnosed when I was 25 and I still find it hard to come to terms with at times. Sleep is my biggest problem; I been known go 3 whole days without sleeping due to terrible pain or I have fallen asleep at the strangest of times. I fell asleep in my dinner, on the toilet (this one's is quite regular!), and I have even fallen asleep when standing up in the shower!!
    I know that it is so hard for others to understand what it is truly like to have to struggle doing the simplest of things, like walking up the stairs. Some days Im ok and have no problems with it and others I have to drag myself up and it takes me about 4 mins to do steps that should only take 30 secs!
    The best advice that I can give you is to make the very most of the good days and never let them slip by, it makes all the rest worthwhile. I hope that you get more and more days up and about. Thinking of you and sending a humongous big hug.
    Lots of Love,

  7. Hi Hannapat,

    I'm so sorry to hear what you have to go through. This video makes me more aware of what others could be suffering from.