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  • Melanie Williams

No jet - but still jet lagged!

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.

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© melanie williams

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