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I just got home from my appointment. I go every three months and it is now over a year since i started to see her. This time i saw another doctor who works with her, though she was there and he went to talk to her about me at one point. This new doctor was really very nice and talked to me at length about how things have been and what my current main problems are. I told him that my itching has been very bad, though i have found a way to make it manageable it is certainly not a cure. He has made me a dermatology referral! I don’t hold out much hope of getting help with it or understanding it but i am very happy to have a referral after having had this problem on and off since i was 13!! (That’s twenty years or so). I hope that the dermatologist will be open minded and as keen to help as the POTS unit are… we shall see.

I also explained that i had only felt a very minor effect of the increased dosage of Midodrine due to all the other symptoms i have been having, particularly the viruses which have felt fairly constant in their impact. He decided to keep the dosage at the same level this time so as not to increase it too quickly and also in case the medication is contributing to the increased itching i think.

I told him that i had seen my GP about my lymph nodes in my groin area (though they seem a bit better now) and he felt my neck and underarms (said they seem fine) and took more blood to check. It is nice that they are so thorough. He also took blood to check my kidney function, not sure specifically why but it’s good to feel that they take things so seriously.

All in all it was a good visit, if a little intense, energy-wise. I managed to get my favourite taxi driver to take me there, and although he was not available for the return journey the man who came was also very nice. Even better, i met a nice family in the waiting room who had travelled quite a long way and were making their first visit to see the specialist. The daughter has ME and POTS like me and I spoke to them for a while and swapped emails etc so i hope we have some more contact. All that talking and effort expended has left me slightly buzzing (which is why i am foolishly writing this now, but i will rest when i am done) so i expect a (hopefully) mini crash over the next few days…

Although there is nothing to be done about how hard things have been recently, i really needed some positive feeling to come out of today. I feel that i was listened to and taken seriously as always there, which is all i can hope for in the short term and it is more than many people get! I feel good and cheered by my trip out of the house, and the social interaction was a real bonus.

ME/CFS Awareness

ME/CFS Awareness


December 2020