No jet - but still jet lagged!
- Melanie Williams
- Dec 3, 2019
- 1 min read
After my visit to London last week I have slept and slept. Doing anything out of the ordinary just seems to zap all my energy and increase pain levels. This is nothing new but in addition I am still in the very early stages of taking ‘Strensiq’ so this is to be expected too. I am on day 50 now! I met some very inspirational people at the meeting in London last week and I invite you to look at the blog by Emma: https://www.simplyemma.co.uk A wonderful young lady with a lust for life despite living with an ultra rare condition.
On Monday my daughter took me to Wrexham hospital for more ESWT treatment but on my Achilles tendons this time. I have been waiting for about 15 months for the appointments which take place over the next three weeks. As usual this was very painful but I an optimistic that it will be helpful over time.
Hi Marianne. I am still getting reactions to the injection sites but they are a little smaller in size now. Still terribly itchy though. Today I am on day 63 of injecting and so far I haven’t seen any improvement. Having said this I am told it will take quite some time before I will feel better. There are 60 years worth if living without this enzyme to put right. Thank you so much for asking. X
How have you been feeling lately? Are you continuing with the HPP injections? Are you noticing any improvement? Thank you for sharing your experiences!