HealingWell
Search Close Search
☰

Coping tips for going out and having fun!

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/1/2010 4:58 PM (GMT 0)
Does anyone remember what fun is?!?!

Sorry for the negativity, I'm new at this...but what I'm really wondering if anyone has suggestions so that going out can not be so taxing on my body!  I'm constantly bailing on friends for girls night and avoid shopping malls, fairs anything that requires static standing because I just can not tolerate it.  I do one store per outing...that's my limit.  And on a good day, need to come home and rest afterwards.  I would just love to be able to go spend a day shopping at the mall, but I know what the results will be!

Anyone have any coping tips?

Posted 10/1/2010 5:11 PM (GMT 0)
I go  out more frequently.  I try to leave the house and do something nearly every day.  If I'm more sedentary, the pain is worse and my muscles aren't getting the movement and oxygen neeced.  Keep moving.  Do gentle exercises like walking and swimming to keep you flexible.  Pace yourself.  Learn how to control your pain.

 

I use ibuprofen with food and extra strength Tylenol to help take the edge off the pain.  My son was going to visit last winter and wanted to go to DisneyWorld for his birthday.  We did and I had a magnificent time!  I took the meds a little closer together and paced myself.  I didn't get a wheelchair, either.  I walked through that park, sat down for breaks, and rode most of the rides...including Splash Mountain with it's 55 foot drop!  BUT, I headed to Disney planning on having a ball.  I didn't allow myself to stress out over how I was going to handle it.  I just went for it and have great memories now.  Yes, I was sore for several days afterwards but it was well worth it.  And, I'm no spring chicken either...63 years old.

 

So, learn to contro your pain, keep moving, and plan on having a great life!

 

Sherrine

Posted 10/1/2010 5:25 PM (GMT 0)
Thanks so much for your reply Sherrine, and all the other info. That's my next worrisome activity. I'm going to Disneyworld in March and I sooooo just want it to be a great family experience for us. So nice to know you made it through it and had a great time! I've been thinking about whether I need to get a wheelchair for it or not. Ibuprofen and tylenol do nothing for me unfortunately. Right now, I'm taking morphone which is helping take the edge off only. Gentle exercise, like gardening, walking, swimming is all fine for me...it's just that darn static standing! I can not stand in a line for even 5 minutes. And the walk stop walk stop that you do in shopping absolutely kills me! I've been hospitalized just from taking my kids to a museum for 45 minutes! And felt great prior to going. So when you say, I need to have a positive attitude about it prior to doing an activity, I get that, but the results usually always end up horrific!
Posted 10/1/2010 5:44 PM (GMT 0)
I'll tell you, I would't get a wheelchair.  There are too many people and too many  people renting the wheelchairs and you can't get around the park because of it.  If I didn't walk, I'd never have gotten through the park.  What I would suggest is start seeing where you can rent a walker.  They have walkers with seats attatched.  OR, at medical supply places, they have a "cane" that opens up to a three legged stool!  I have one of these but never thought about taking it to DisneyWorld.  This way, you can sit when you need to.  This link will give you an idea what I'm talking about. 

 

 http://www.amazon.com/Apex-Carex-Cane-A757-C0-Piece/dp/B000303A18

 

I live in the Tampa Bay area and go to all the great things around me.  Start, right now, gentle exercises DAILY.  When I started walking, I could only walk four houses down!  Now I start my day with a walk with my dog for at least a mile.  I also have a cane that collapses and I take that with me just in case....  But, start now so you will be in better shape for DisneyWorld.  You can do it!  Also, try the vitamins and supplements I mentioned in Fibro 101.  These have helped quite a few on this forum.  Every little bit helps.  But, I do know you will have a wonderful time in spite of fibro.  Even people watching is fun if you don't want to do the rides. 

 

Sherrine

Posted 10/1/2010 5:55 PM (GMT 0)
Thanks again for the oodles of great advice! I will check out those canes! I do do my exercises every day, even when I'm in pain....I know it is important. Have a fantastic weekend!
Posted 10/1/2010 6:24 PM (GMT 0)
The link I gave was just an example to show you what a cane with a seat looks like.  It looks like people didn't prefer that particular cane.  I went in the medical supply place and tried them.  The one I purchased was sturdy and could hold up to 250 pounds.   This link looks like the one I bought and it was around $50.  You want it to be good because you don't want any accidents! 

 

http://www.amazon.com/Tri-Seat-Adjustable-Seat-Cane-Color/dp/B000C4RRWS/ref=pd_sbs_hpc_2

 

Sherrine

 

Posted 10/1/2010 8:12 PM (GMT 0)
Krista, Sherrine gave you some great advice. I'm a big fan of moving and
exercise too. I'm lucky to have some friends that live in my neighborhood. We
walk together, shop together and go out for lunch. Everything we do is paced,
they know about my conditions and they have conditions of their own. We aren't
spring chickens...we range in age from 48 to 68...I'm 58.

I get out of the house even on bad flare days to walk. My friends and I walk a route that is 2.6 miles and somedays will walk three. If I'm flaring real bad I
won't join the group but will walk a couple blocks on my own.

Getting out of the house really helps distract the pain. There have been times
where I've been out with my hubby or friends and will have to cut an activity
short because of pain...but I figure I still had fun. Being around people helps.

Each day have something in mind to do, to get out of the house. Even if your
flaring you can call friends to come over to just hang out outdoors and enjoy
their company and fresh air. Laughing is the best medicine and chocolate is
good too!

Hugs, Robin smilewinkgrin

Posted 10/2/2010 1:40 AM (GMT 0)
I'm with Robin and Sherrine-get out and have fun! I do exercise everyday. If I don't I feel horrible and stiffen up really bad. I never exercise if I don't have time for some gentle stretching after wards or yoga. My husband has been out of town for weeks and will be home next week end and I plan to go dancing. We swing dance, not Glenn Miller but rock n roll music. I can't wait. I will not let this stupid condition rule my life. And talk about not being a spring chicken, I go on Medicare Dec. 1. Yikes 65! smhair
Posted 10/2/2010 2:15 AM (GMT 0)
Hi, Krista. I don't think we've "met" before, so welcome! I hear you loud and clear....I used to love to shop, and walk, and dance, and - but that was then. Now I'm also a one-stop shopper, and if I go for more than about half an hour, boy, do I pay.

The only thing I can think of is to not carry a purse, and use carts when they're available, but that's probably nothing new to you. I sometimes think the very air in malls, and the lighting, do a number on us sensitive types (actually, that's old hat, too, if you've read Devin Starlanyl's books.)

One day at a time.

Debbie
Posted 10/2/2010 3:06 PM (GMT 0)
Krista, I have to agree with sherrine and robin, try and stay active, I know that my pain was much better a couple months ago before starting chemo. Chemo wipes me out for at least a week and then I still feel weak so I dont get out as much as I did or get things done around the house like I could before and I am noticing the pain getting worse again. The last couple days I have been taking my grandson for a short walk just to get some exercise and keep him busy so hes not so bored here at the house and it feels good just to get out for a little while. I hope you have a wonderful trip to disney world, I was there quite awhile ago but I am a coward when it comes to rides. I was too scared to ride any of them. lol but I had a great time just being there.
Gentle Hugs
Shirley
Posted 10/3/2010 7:45 PM (GMT 0)
Thanks all for the advice! Nice to meet you too Debbie! :) Right now, I'm barely managing to work full time, look after my kids, etc....after all that, I have absolutely no energy left to do anything else. I'm going for an assessment tomorrow, where they assess my abilities to work. I don't want to stop working completely, but I suspect I will end up only working part time. Hopefully that will help so I'm not just working, sleeping, working, sleeping and I'll have a bit more energy to do some more enjoyable things, for me and my kids sake.
Posted 10/4/2010 3:22 AM (GMT 0)
Sherrine,

Thank you for that link!!  That cane is totally cool!  I want one!

Posted 10/4/2010 5:46 AM (GMT 0)
Hi Krista,

I was going to make the same suggestion regarding the folding stool/cane combo, so I'm glad Sherrine posted about that. The other thing I would say is this: make sure you do get out and about every single day.

I've just finished working my way through a two week pit of depression and I don't think I left the house during that whole period. Man, did I ever pay for it...I was stiff and sore and more miserable than after ANY workout. I pretty much either slept, or sat on the couch and cried (or sometimes went to sleep crying...you get the picture!). I moved as little as possible, because it took too much effort and all I was eating was yogurt w. flax and pumpkin seed granola - healthy yes, but not if that's all you eat...period.

What I'm saying is that as hard as it is, you really do need to keep moving, and you need to eat well to give your body every chance possible to get better. I hope that you'll be able to manage a bit easier by remembering to pace yourself, let the little things go that aren't worth worrying about and focus on you and what you're aiming for.

It's nice to meet you and I look forward to your future posts.

Hugs,
Pam
Posted 10/4/2010 11:48 AM (GMT 0)
Thank you everyone, your support is a blessing! It's unbelievable the suffering so many of us are dealing with on a daily basis. I don't know what I would have done if I didn't find people who understand to talk to about it!
Posted 10/9/2010 7:48 PM (GMT 0)
Krista,

I read your post several days ago, but couldn't check in until today because of work.  Welcome to the forum.  I agree with everyone about the importance of movement.  It is also good to pace yourself and alternate activities:  move some and rest some.  Also, do what is best for you when it comes to mobility aids.  You will eventually learn to know your body.  But that doesn't always work because fibro is so unpredictable. 

We are all a little different.  I actually did use a wheelchair at Disneyland and would not have done it any other way.  That is not to say that others who don't are wrong - we have to do what is best for us.  I do not want to take tylenol every couple of hours and try to manage pain in other ways.  I tried a scooter once at Vegas and did not like it because it hurt my shoulders and hand and I was stuck in it.  Although some here like the scooter.  The wheelchair was nice because I could adjust my position, get up and walk and push the chair, sit and rest, or stand up and use it to stretch.  I could propel myself or someone would push. 

I also have a cane to use when out and about.  I think Sherrine uses hers at home after getting out of bed.  Mine helps me go further with less pain and I can walk more, which is good.  Walking/hiking sticks are nice, too.

Mobility aids are a nice way to give us independence and the ability to continue to enjoy activities with friends and family.  Let us know what you figure out and what works for you. 

Sue

Posted 10/10/2010 1:39 AM (GMT 0)
hi krista, we are all very much effected differently by this illness although we have lots of symptoms in common, i think the severity is very different in each of us. as it is with most illnesse. i am not able to go out walking or meeting up with my family/ friends anymore , i think its great that some people can still work full time and carry on with their life pretty much as normal but i am mostly housebound. sometimes once per month i go out to shops but can only do one shop then home and i do suffer for at least 2-3 days for this.i do stretches several times a day and gentle exercises several times and every hr or so i walk about the house, im also on the move most of the day at home taking care of my son, but if i were to go an holiday like you are i would def be getting a wheelchair from some were to take with me. this is for one reason only i would rather be safe than sorry. i also have arthritis and some other health problems but my fibro is the most painfull and leaves me feeling very weak most of the time. i use crutches at home but wouldnt use them outside as i can only hold them for a few mnts at a time. but i wouldnt want to spoil a holiday for my family if i was in too much pain to carry on walking, cause known me i would be !! id use it when needed as the parks are the biggest iv ever seen. this is a totally personell decision for us all and i do hope whatever you decide it is the right one for you. if you do choose to use a wheelchair you will get around the park just as quickly as any able body person dont worry that its going to be too crouded with people who have to use chairs. one other thing to remember is if you use a stick it can hurt your hands and even give you back and shoulder pain. i hope you have a great holiday and your pain is kept to the min. all the best shana.
Posted 10/10/2010 10:53 PM (GMT 0)
Krista, as I understand your first post on this thread, your main problem is "static standing".  I'm assuming you can walk just fine.  BUT, if walking is an issue, of course get a wheelchair!  I was just encouraging you and giving you suggestions how to work around "static standing".   I hope I've helped you some. 

 

Sue is correct in saying I use my cane to help me get out of bed but I also take it with me when I walk the dog because sometimes my hip will start getting sharp pains and I have to shuffle home.  My cane collapses so it's easy to take with me even if I'm not using it.  The cane with the seat attached is used when I go places that I know I will have to stand a lot.  I'll be taking that with me when I go to vote in a few weeks.  Always plan ahead!   turn   

Sherrine 

✚ New Topic ✚ Reply