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A Day in the Life - Rosemary's Day

I was diagnosed by biopsy with Bullous Pemphigoid just over a year ago. In that time my lifestyle has changed enormously. I have gone from being active with plenty of energy to becoming a couch potato.

It is difficult to know what the cause is, I question whether it is the disease or the medication. The medication has worked well in terms of reducing dramatically the blisters and terrible itch I started on 50 mgs of prednisolone and I am now on 4 mgs, but I am finding it so difficult of reduce further I also take 15mgs of methotrexate weekly.

My day consists of finding the energy to get dressed and even small amounts of housework or cooking are a challenge.

I have had the Covid immunisations but a blood test has shown that I have no immunity against Covid-19. The reduction of Covid restrictions scares me and I avoid places where people congregate and meet, making life very lonely and devoid of previously enjoyable social occasions.

My only son, daughter-in-law and grandchildren live in Scotland and I can no longer make frequent visits to enjoy them.

I have been fortunate in that my consultant has been excellent and I can contact her when my heath deteriorates as it has done several times in the past year.

Finding PEM Friends has been a life saver for me, I felt so alone after diagnosis and although I had worked in the health service for 40 years I had never heard of Bullous Pemphigoid. The weekly Zoom meetings give me the opportunity to chat to folk who are so warm, welcoming and much more knowledgeable than me.

The website contains a wealth of information and guidance and links to a huge variety of topics to explore, learn from and inform.

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