I love rheumatologists!

I had a really good appointment yesterday and feel very reassured. We discussed my tiredness and the reasons for it. He was keen for me to understand that I am doing really well despite having chronic diseases. My blood results, lung function tests and heart echo show that my body is coping well. He repeatedly commented on how lovely my skin is! He was saying how rare it is for scleroderma patients to recover skin elasticity. I commented that the down side was that I was now getting wrinkles – he thought that very funny saying ‘better wrinkles than tight scaly skin’. We both agreed with that. He felt that the tiredness is a result of a combination of diseases, tablets and past damage. I asked about how much effect the autoimmune disease still had and he said that it would still have a huge effect on my body. I asked about the fluey symptoms I have in the evenings and he said that is still part of the autoimmune disease. So this is it – the new normal. I have wondered what the new normal would be like and I think we have reached it. We discussed learning to pace myself and not trying to do too much in a day! It was good to hear that this is ok – that there isn’t something I should be doing to make it better but learning to accept that this is my life. I will continue to plan in rest days and learn not to feel that I have to apologise all the time when I can’t do something. I think he was trying to tell me to be grateful that I am as well as I am. So that is what I will try to do. Content – right here right now. Blessed with all that I can do and all that I have. Thankful for each and every day.

Today – flowers for church arrangements, some cooking for the weekend, and a trip to buy compost for my sweet peas who really need new pots.