Milford Zoom Meeting Report

21st November 3pm-5pm

Write up by Jane Bennett

Catching up with those who usually join us at Milford was a pleasure, plus welcoming a new couple.

A couple of the discussions included how we manage fatigue and when/ what age did we know there were activities we couldn’t do, in relation to when we were diagnosed.


In 2018, an occupational therapist, Beth Williams, included some key factors in her presentation on managing fatigue:

  • Raise your own awareness to your energy levels
  • Listen to your body and take ownership
  • Learn to say NO 
  • Leave time for doing important, pleasurable activities
  • Explain fatigue to your family and friends
  • Learn to manage your fatigue.
  • Plan ahead
  • Prioritise activities
  • Organise your environment.

Activity Limitations

Some people had physical difficulties during childhood with HSP not being confirmed for a couple of decades later. This could have been unable to do certain school sports and activities. We agreed that this could easily be because HSP is a rare disease and has only recently been more well known.

We all agreed being able to do some exercises daily, be it physio guided or Pilate’s type, is beneficial, especially to ease back discomfort.

As always, great to see those that were able to join us, but sorry for those that couldn’t make the connection. We appreciate that if people can’t attend the Milford meetings, be it in person or using Zoom, they let us know. As many have known each other for a number of years, updating others that all is well and they have other commitments gives peace of mind.

Looking forward to meeting again in April, be it in person at Milford or using Zoom.  

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