Am in a recent flare of fibro and CFS…have foend some things that have helped and want to share them and hear from others any they have found useful of their own. The more we can learn from each other the better.
Rest…even when you want to do everything…rest.
A bar stool in the kitchen to sit while doing dishes and preparing or cooking food.
Prepare meals and freeze them for the times when you are in too much pain to cook.
Explore and use online shopping for groceries and when theyare delivered ask the delivery person to carrynthem inside to your bench.
Use a showering stool when you shower.
Have a walking frame that has trays attached to use to carry food and drinks when you need to use it.
Have a wheelchair to use for the times when either the pain is to great to walk or you need to suemit to conserve energy. If you need to or want to go to the mall during those timesmgetmyour friend to push the wheelchair to conserve the energy you may need to propel it yourself.
Use a timer and inky clean for 15 minute slots. You don’t need to spend all day cleaning, if you do the bathroom 15 minutes is long enough to clean it. The kitchen can wait until tomorrow.
Think about energy conservation in advance, I have bought a robot vacuum that vacuums my floors and all I have to do is push a button and empty the dust collector once it’s finished.
Instead of having to phone people and update them about how you are think about sending a multi text daily so send the same text to the peoplemyou would normally ring or use social media to update how things are.
Accept whatever help is offered to you. It’s hard when your fiercely independent to do this but people really do want to help, I have had meals delivered to me, baking done, people have folded washing, done washing, changed my bedlinen, came and st and chatted with me all of those types of things. As I said it’s hard to accept help so think of it like this, these people are giving you a gift…it’s rude to say nomso say Tunis you instead and allow them to help.
If you live somewhere where there is a service like meals on wheels, this is a service where once a day a hot meal is delivered to you at home, there is a nominal charge, accept them. If you don’t feel like a meal that’s delivered today then freeze it down for some other time. The point is accept the help and the meals, in the future you may be able to offer some help to someone else.
Do things that don’t take physical energy to keep your mind distracted from the pain. Read, knit or the like or if your too tired to read use the talking book service from the library. That way you can distract the mind from the pain by listening to the books being read.
Ask someone to drive you to medical appointments. If it’s family allowmthem to come in so they get better educated on the illness.
If you are on meds set and alarm to remind you to take them.
Use a toilet raiser (high toilet seat) to help you get uo and down from the toilet. If you have them you can also have arms that come down to help you push up from the toilet.
Make sure you stay hydrated by setting an alarm in the hour to remind you to drink. I had to do this as I forgot to drink.
I’m sure there are many kor andi look forward to reading what others have found that helps.
Lindy
Er sorry for the spelling errors and where words run together another sign of still being in fatigue. Hope you are able to interpret the gist of what I’m saying.
Lindy - these are great tips and some I never even thought about - and am really excited about the 15 min. cleaning one! I tend to start something and then get distracted and start something else and get distracted again and start something else!
Thanks so much for reminding us that we really do need to learn to pace ourselves. hugs~ Sandi
Sandi I moved to this 15 minute cleaning when I was directed by my doctor some time ago to a website called flylady.com. Well worth a look at! Since then I’ve tried to break things down not 15 minute slots if I can’t manage 15 minutes in one go I’ve broken the fifteen minutes down not what I call bite sized pieces of five minutes but do three five minute slots throughout the day in the same area. It does work and set the timer you’d be surprised how much you can do n 15 minutes!
Lindy-loo,
I love this, such great ideas , my favorite is the kitchen bar stool … I’m seriously going to get one !
And the reminder to accept help is a great one.
Staying hydrated is very important I found what helps me is I fill a glass bottle (it’s 32 oz ) every morning, this way I know how much I’m drinking, I use my filtered water & I have been able to give up buying the bottled water, I couldn’t lift the cases of bottled water & I hated that it was in plastic, ( totally not good for us ) & it was getting expensive & filling our land fills.
So switching to a water bottle that is glass ( it’s covered in rubber ) was a win win !!!
I liked it so much I bought a smaller one (14 oz) for when I leave the house
Good idea dee b I might actually put the water in a bottle in the fridge. Still use the timer to remind me and at the end of the day I will know how much I’ve drunk. It’s so easy to forget to drink when your not well or for me it has been and yet it’s so important to stay hydrated. I found I was falling into exhaustion at night and would wake in terrible pain because I’d slept through taking the long acting morphine so would have no pain cover when I woke hence the alarm for meds…borne out of my own bad experience. So even if I drop into exhaustion (I say that instead of sleep because it doesn’t feel restorative) I am woken to take the pain cover.
If you have a smart phone the Walgreens app has a pill reminder feature that is great! Once you get it set up, it'll remind you to take your medicine, what medication you're supposed to be taking and when to reorder. It's a great feature for me because I take multiple medications throughout the day and I am usually ok at remembering the night doses but sometimes forget the morning and mid day ones.
I agree that asking for help and accepting help when offered is very important. Some times I feel silly asking for something that seems simple to most people but it can be difficult for me on bad days.
I signed up for a guest pass at the YMCA and tried out their Joint Mobility class in the therapy pool (it is hotter than the other pool). I really enjoyed it even though everyone was 3x my age but the warm water felt great and moving my body didn't hurt as much. I filled out an application for a discounted membership because money is very tight for me and I haven't heard back yet (it has only been a week) but hopefully I will get approved for a significant discount given that I am on an extremely tight budget so that I will be able to attend the class regularly. So if you have a YMCA in your town, you should stop by and see if they offer something similar and get a guest pass to try it out.
Resting is hard for me to remember to do when I have a good day(s) and then I always pay for it for days afterwards so your # 1 recommendation is very important for me.
No Allison I didn’t know about the walgreens app but am downloading it to my iPhone as I respond to you. I’ve always believed the best information and coping strategies come from peers, or those who are traveling the same road. So thank you because of you I now know about this app and will pass the formation on to those people I know from support groups in new Zealand!
I am hopeful we will all get something out of this thread. Giving and receiving is what support is all about. I’ve noticed that what I give today I receive tomorrow. Almost a law of the universe.
