Having a bad flare up now (so much nerve pain) and it's scaring me because I haven't had bad symptoms in a month. Taking it day by day like you say. Sometimes hour by hour. Thank you for your videos
Sorry you are having such a bad flare up, Ashton! Yes when your body is sending all those nerve pain signals, you just have to do the basics to take care of yourself x
Thank you! So makes us feel not alone. I have so much trouble with resting and small goals but this makes so much sense. :) I too was a runner and would dearly love to run again.
Loved this video - so sensible and full of excellent advice! So pleased that you have worked your way back to a 30 min walk over 6 months - go you, my friend!!
You’ve got such a soothing voice. Having a flare up but think it’s weather induced (uk) it’s freezing joints are on fire, then they set off everything else 🤦🏻♀️. Could you do a recent symptoms your dealing with and how you cope with them? X
Allo Lenny, i just discovered your videos. Im glad i found it, feeling egotistically less alone with this! :-) I m having set back right now after 15 month of being completely free of any symptoms.its tuff. I ve beeen diagnosed less than three years ago but living with mild symptom for 30 years with only light head shake, then my head started shaking uncontrolably in sunlight and under neon light.i literally hid in the dark for almost a year. Thanks for the vid.
I'm glad my video helped! It's so difficult when you were symptom-free for 15 months and now having a setback. I hope the symptoms settle down quickly. There's hope for you to improve again!
Having a bad flare up now (so much nerve pain) and it's scaring me because I haven't had bad symptoms in a month. Taking it day by day like you say. Sometimes hour by hour. Thank you for your videos
Sorry you are having such a bad flare up, Ashton! Yes when your body is sending all those nerve pain signals, you just have to do the basics to take care of yourself x
Thank you! So makes us feel not alone. I have so much trouble with resting and small goals but this makes so much sense. :) I too was a runner and would dearly love to run again.
Thanks for this video. I thought recovery would be a straight line. It’s not. I have to remember not to go crazy on the good days.
Loved this video - so sensible and full of excellent advice! So pleased that you have worked your way back to a 30 min walk over 6 months - go you, my friend!!
You’ve got such a soothing voice. Having a flare up but think it’s weather induced (uk) it’s freezing joints are on fire, then they set off everything else 🤦🏻♀️. Could you do a recent symptoms your dealing with and how you cope with them? X
Thanks Amanda. Oh weather can be awful for setting off symptoms!
Sure that's a good idea 😊
Allo Lenny, i just discovered your videos. Im glad i found it, feeling egotistically less alone with this! :-)
I m having set back right now after 15 month of being completely free of any symptoms.its tuff. I ve beeen diagnosed less than three years ago but living with mild symptom for 30 years with only light head shake, then my head started shaking uncontrolably in sunlight and under neon light.i literally hid in the dark for almost a year. Thanks for the vid.
I'm glad my video helped! It's so difficult when you were symptom-free for 15 months and now having a setback. I hope the symptoms settle down quickly. There's hope for you to improve again!
Hi also for Australians this condition is on Ndis.
I can only rest and pray kthats the only thing that helps me
Where in Australia are you ? Can you recommend a good neurologist ?