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One of the hardest things for me was going from an active healthy person to a “sick person” (for want of a better term), almost overnight. But I have learned it is crucial to find activities, both physical and social, that you CAN still do. I have had to modify all my interests and obligations, pay much more attention to “self-care”, and seek out support wherever I can find it. There IS light at the end of the tunnel. After one year, I am finally tapering successfully, and feel well enough to plan a week-long vacation. It’s not the six week road trip we usually take in winter, but that’s ok. Just give yourself permission to let go of obligations that are just not realistic anymore, and take it day by day.
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I happy to see that you are making plans to take a vacation. I can relate to what your saying. I went from going 110 mph to 20 mph. Once I was diagnosed and learned about this disease, I accepted my situation. I think my friends and family took it harder than I did, because they know how active I was (hiked up mountains, hauled an elk out of the woods on my back, kayaked, camped, traveled, etc.) I'll do whatever it takes to get better. I am currently making plans to go to Iceland in October 2025. I'm am remaining positive and confident that the Actemra infusions will help me. If they don't, I'll have good travel insurance, if I have to cancel my trip.
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"It’s not the six week road trip we usually take in winter, but that’s ok."
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Give it time ... maybe the 6 week vacation will happen again. After 13 years of PMR, I'm doing a 6 week vacation right now. At one stage, assisted living was going to be my next destination.
Next winter, I plan to check Australia off my bucket list. The 3 week TransPacific cruise should be okay but I'm dreading the 24 hour flight to get back home.