I missed this follow-up during the holidays. It was a combination of a rare virus that hit me hard, and site maintenance.  This is the second blog that is ALL from you. YOU sent me your self-care tips – so here are more.

Anonymous works full time listens very closely to her body. ‘Just when you think you can anticipate something- the disease throws you for a loop.  It’s become second nature to me to mentally evaluate how I feel several times a day- in order to know how hard to push myself or to pull back. I make sure I schedule something fun – just for me!  Dates with myself – decompression time. If I don’t address the mental health aspect- I can’t really hear what my body is trying to tell me.  ( SMART ADVICE)

Rita likes to get more massages in order to take care of herself.

From Ida in Oslo, Norway ( an old PI friend) some great advice from a former nurse.  I apologize in advance if I did not get the proper translation- please forgive me Ida?

Ida opines about the fact that in spite of having CVID- sometimes pneumonia, an infection- she never looks sick. She finds that very annoying because ‘ other people, often including healthcare professionals, don’t believe or understand our situation’.  ( I personally agree because I seldom ‘look’ sick)

Ida was recently diagnosed with sarcoma in her spine. So she attempted to find a better way to take care of herself. She read a book that suggested ‘What do you WANT to do today-now- to feel healthy – or better? This was a wake up call for her. Instead of thinking ‘ I SHOULD train at least 3 times a week- I felt joy walking in the heated pool 1 day a week. Asking myself what I might find OK, interesting, and fun to do today was a huge relief. PIDD is a rare; sarcoma is rare.  I need to focus on something that is ordinary and common’.  Ida bought herself a new sewing machine and found that she loves quilting.

She finds great joy in making small quilted squares filled with lavender.  ( Thanks for sharing this great idea, Ida)

I think the lesson we can learn from this is that we need to stop thinking of what we NEED to do and sometimes just focus on what we WANT to do.  Whether that means taking a nap, exercising, crafts. vegging out.

THANK YOU TO ALL WHO CONTRIBUTED.

I’ve learned some new ideas for Self Care.

Next up – Self Care from the professionals.

Later

C

 

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