Information /support

I feel so much for you with regards to the heat. I can only agree with you the vasculitis does get worse. I have to manage it by using electric fans I have one on in the lounge during the day and I have another in the bedroom at night. There are many draw backs but some nights I have to change the sheets due to sweating so much. Unfortunately I have no other answers. I feel quite guilty shutting out the sun having to close the sun out but it's important to manage the situation as best I can.

I have decided not to have a mastectomy but stay with taking the hormone tablets I unfortunately the side effects are similar to the side effects I am experiencing with the vasculitis,nausea,hot flushes I am finding it difficult to know which belongs where the only new pain is in my shoulders,wrists and backs of my hands.

So all that is left is to persevere

No matter what this condition throes at us we just can't let it beat us. So I will pop the pills,plug into my oxygen and keep telling myself I am going to be around for a long time.

I know it is very hard.

1 Reply

  • I believe you can get an under cooling sheet and cooling pillowcases, typical I have not got mine yet but have seen them on the internet.

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