Friday, April 30, 2010

Tips for surviving meet-ups with chronic pain and fatigue

Living the life of a Fibrolita is hard. You can't really get out as much as your friends, and when you do you can find yourself paying for it for the next couple of days. So what can you do to maximize your meet-up experience?

1. Choose the meet-ups you will attend carefully. Going to the zoo or museum can be quite a bit of walking. This might be the kind of thing you will want to opt out of, our suggest meeting everyone later for dinner. Many groups will be accommodating to this sort of thing, and they will probably be hungry after a day of walking. Try planning some meet ups yourself, too. I know I need a little help when I plan meet ups due to Fibrofog, so don't be afraid to ask for help. If you do happen to get tired at a meet up, just take a break.

2. Make sure the people around you are aware of your condition. Don't go overly into detail unless they ask, you don't want to bore them or worry them. If they are your friends they will be very understanding. Even people you have just met can be understanding, don't worry about being made fun of.

3. Pack lightly. Take only the things you know you will need. Toting along lots of magazines and books is nice for the other people attending, but not really practical for the Fibrolita. If you must bring these sorts of things, see if you can't find a good friend or significant other that is willing to help you out.

4.Stay hydrated. This is not only important for the Fibrolita, but for the healthy lolita. You will feel better when you are hydrated and your skin will look better.

5. Don't be ashamed of what you can't do. Jump photos are cute, but I know I am unable to jump. Don't fret about it, but find something cute you can do. If you need a cane to get around find a way to work it into photos or coordinate it you your outfit.

6. Don't forget to have fun! If you are feeling good let people know. Don't talk about your illness to much on these days, just live in the moment but don't push yourself.

If your recently diagnosed, or injured some of these things can get hard to get used to and you may have some trial and error. Don't despair if you wear yourself out. Getting out and having fun can be some of the best treatment for the chronic ill, just so long as you know your limits.

Do you have any tips that you use for going out that you want to share? What works for you?


  1. This is a good post for meetup organizers as well!

  2. ♥♥I am happy you came to meetup on Thursday anyway!! (((huggles))) Hope you didn't tire yourself out too much~

  3. Number 5- You can participate in the Jump photo: be the photographer! Don't get down thinking about the things you can't do, instead think in terms of what you CAN do. Everyone will be grateful that someone volunteered to take these pictures.

  4. Hi I had a question that is not quite about this but in a way it's related and I could not figure out who/where to ask so I figured this might be a good place (maybe you know a better place?) I have a high risk of hyperthermia (overheating, which can cause me to pass out etc) but I really want to attend some meetups in the summer. I am trying to figure out how to "lighten up" the lolita outfit without being frowned upon for not wearing lolita right. Any suggestions? I only have JSKS so far but I am thinking maybe I can get away with a shrug/bolero instead of a blouse? Maybe I can get away with ankle socks? I know no petticoat is really considered a no-no but I am not sure if I can handle it in the heat so I'm trying to figure it out. I am also trying to decide if I should post in the meetup's event page to ask about this to the other girls or if they are going to think I am trying to act special or get special treatment or something. I just want to be able to enjoy the meetup and not get sick!