[AliM]

I thought to ask here for suggestions. I have battled with the CRPS in the balls of both feet for the past 3 years, and was diagnosed 18 months ago with 2 forms of arthritis. (RA and AS) Even though the RA and AS definitely effect every aspect of my daily life, I think it is my CRPS that affects me the most, with tiptoeing to avoid flare-ups, etc.

One thing I struggle with, though, is I am easily exhausted, and I have learned the hard way that if I wear myself out (physically or emotionally), I seriously pay for it for the next 2 days: crazy pain, exhaustion, inability to do much other than sit and try to let my body recuperate. I have learned to avoid day-long activities (hectic family reunions, visits to amusement parks, etc.), but lately I have struggled with the less obvious things: For example, my daughter and her new husband came to visit on Saturday and were here from 9am to 11pm. It's not like we went to an amusement park, for crying out loud, but by the time they left, I was exhausted from trying to put on a happy face while feeling dumpy all day long, and struggling not to burst into tears as I shooed my teens into bed.

I hate that even a day at home with visiting family is too much for me to handle. I feel like I need a couple of hours mid day to be completely alone and recharge. But that's hard, when they're excited to tell you what's happening in their lives, etc. and I'm excited to hear those things!

How do you handle things like this? I feel like I can only handle half days, but that's not realistic, especially when people don't "get" this disorder. I would LOVE to have some suggestions and please please hear that I am not alone. Or maybe I am? Maybe I just am super weird?

Thanks for any suggestions you have about trying to cope with things like this!

[Jomar]

It's a tough thing to figure out, but sometimes you have to just be honest and say you need some quiet time...
Maybe suggest to guests/family that they can go sightsee for a few hours in the midday?

Maybe they felt like they had to stay and visit the whole time, but perhaps going off for awhile might have been nice for them too?
Doesn't hurt to suggest it, so they know it is OK with you that they take off for awhile.

[St George 2013]

Nope you are not alone in this. I have severe SFN that started in May of 2013 and am in daily pain.

I'm almost 53 and a mother of 2 grown children and Grammy to 6 ranging in age from 8 to 18. They all live close by and tend to come in and out quite often.

I do what I can while they are here but as soon as I know I can't go on anymore I go to bed. That's right.....I go lay down. I tell them they are welcome to stay but they now know if I don't lay down and push myself too much I will go into a flare that can last up to a week.

At the beginning I printed small articles out for them to read and also told them to go and look up SFN on the internet so they would know more about what I'm going through.

And Jo*Mar is right......maybe they can go out for a few hours and have lunch or shop....especially if they come from out of town to visit you.

Before the cancer, chemo and now SFN I was supermom and supergrammy. Sadly my 84 year old mother is in better physical shape than I am. I've learned I have to take care of myself first. And the kids know that now. Even the sweet grandchildren.

Take care and keep us posted

Debi from Georgia

[ger715]

As Debi posted; you are far from alone. It is very often difficult to get even loved ones to understand how 24/7 pain limits what or how long we can be active. Fortunately, most of my immediate family realizes I only have a few hours to be at any occasion or handle visitors. The amount of times to be able to even do these things is quite limited. It may take a while to get this across; but you have to come right out and openly confess, you are not up to prolonged visits or even social events. Hopefully, eventually, most will be understanding.


Gerry

[maygin]

I'm sorry I don't have any advice, but I wanted to thank you for posting this. Sometimes I feel like I'm being a baby when I can't handle something as enjoyable and low key as friends over. I needed to hear this. And it's a good reminder that I need to do less. Part of me so very much wants to go back to being super woman, so I keep doing things that are too much and getting angry with myself when I crash or flare. Thank you for the share and the reminder.

[scubaforsythe]

Glad to know I'm not alone, I get told all the time by an ADHD boyfriend that I need to do more, and that I shouldn't get upset when his kid (22) wants to use our house 4 nights a week to play table top games in our foyer and dinning room with his group of very loud and obnoxious friends till all hours of the morning. I sleep on couch because my boyfriend moves a lot in his sleep and grabs me, usually my right arm, and I can't sleep like that, so it is myself and my daughter who's bedroom is downstairs that get no sleep and have to deal with constant company....

I hope things get better for you quickly!!