Unfortunately, despite the emotional stresses being reduced I continue to suffer from angina, depression and anxiety. Medication has definitely helped in that I don’t spend all day in bed, but I am not the person I was. I was talking to my kids about it the other day, and the best way I can describe my life now is ‘wading through treacle’.
Everything takes so long to do.
Before I became ill, I put together websites, blogs and ran social media accounts on a regular basis. I worked full-time, was a #Trustee for a major Charity and had a great family and social life (basically I was the average working mother who juggled a hundred balls and enjoyed it). Now, it can take hours on some days for me to muster the energy to get out of bed and get dressed in clean clothes! This blog has taken me months to start - and it’s only because of the help and support of my wonderful family that I managed to get it together at all.
I hope this blog will help to spread the word about #Fabry Disease, what it is, how it affects individuals and families and how research is generating some really effective treatments.