RABlog Week 2017 Post 2: Living with RA - Tips and Tricks

Tips and tricks – What are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition.

I liked the idea of this prompt from the outset, but I've not got a nice organised list to download into a post...I'm just not that organised!! So, bear with me while I ramble through how I manage day to day.

The biggest thing, which has made the biggest difference overall, has been to learn to LET GO. I'm something of a perfectionist, and a massive multi-tasker. Back in the day, during one of the busiest times in my life (VERY early years of RA when it was very milk) I was at art school in the final years of my degree, sole parenting two children who were at two different schools, had a one day a week job in a garden centre with my mother, and had the opera chorus contracts as well. It could get VERY hectic when they all started colliding...which did happen. But I got through all of them. Finished assignments, learned my music and did the shows, got to work on time, got the kids to and fro where required, and kept up with the house - well, sort of, re the latter. My house couldn't have been photographed for a magazine spread at ANY time during that period, but that wasn't on the calendar so it didn't matter. 

It's been VERY hard to come to grips with the fact that I just can't load myself up like that any more. But I can't, and I don't any more. ONE thing at a time, and on the bad days when I can't even manage that, let it go... 

Related to that is learning to say NO. To people who ask for help, or extend invitations, or have expectations... Most of the time, it's going to be OK, and it's nice to be invited out, and it feels good to help people out, etc... BUT, not at my own expense. I was someone who said YES without thinking most of the time. But these days, I take a moment if I'm asked to do something - no matter what it is. I might need more than a moment, in which case I let the person know I'll get back to them to allow myself space to work out if it is something I can manage or not. I don't make up stories either if I end up realising I have to say no. I tell it as it is - I tell people if I'm not well enough to go somewhere, or do something for them. They may or may not take that on board, but that's not MY issue - it's theirs. MY issue is being able to manage what I need to do on any given day, and saying yes and adding a load I can't manage can mess me up for my day, and more days beyond that sometimes. So, learn to say no and look after yourself. And that, by the way, includes saying no to your children (if you still have children at home) if need be.... Obviously, not for something that HAS to happen, but they also need to learn that you can't be going non-stop without it being potentially harmful. 

Managing at home - well, there are things I just can't do domestically any more - not if I want to be able to do anything else that day. I CAN'T vacuum the house and expect to have my hands functional by the end of the job. So, Dragon Dad, bless his cotton socks, vacuums and mops. I use the dishwasher - my hands aren't safe in a sink. I have a gazillion cooking hacks - I wrote a post about those a while back - you can read it HERE and take whatever is useful for you and tailor it to the way you eat. 

Overall though - PLAN. Work out what you need to do, what you can do, and make a plan around those factors on each and every day. Be prepared to delegate. Days I know I'm not going to make it to the end of the day and be able to produce dinner, I let Dragon Dad know as early as possible in the day so he can bring something home on his way back at the end of the day. If there's an appointment I need to get to and I know I'm going to struggle to do the drive, I find someone to take me. If there isn't anyone, I move the appointment. If I can't get all the shopping done on one day, I break the list up and do it in smaller batches over a few days. If there's a busy time ahead - I mentioned the Jewish High Holy Days in my previous post (we're in between Rosh Hashanah and Yom Kippur at present and I'm singing in the choir and there are piles of rehearsals) - plan ahead. Move anything that's not essential so that in between the things that must happen, there's down time so you can rest... I'm doing bugger all apart from rehearsals and services at the moment, and that's how it'll be until after this weekend coming is over. It's why these posts have been going up late - because I HAD to rest. 

Accept that perhaps you won't do things to the extent that you once might have. A big one with that for me right now is this blog event. For the last two years, I've been very prepared and have written very considered and detailed posts. This year, that's not happening. I've been up to my eyes with the High Holy Days prep. I'm exhausted. I'm flaring. I had my infusion yesterday because with diabolical bad timing that came right between Rosh Hashanah and Yom Kippur. So I had a choice - write much less considered posts off the top of my head and still be part of the event, or bail altogether. I told myself that in the greater scheme of things, it would be OK if I bailed. Which it would have been. BUT, I wanted to do it. I've really enjoyed it in past years, so I didn't want to miss being part of it this year. So I decided to just get moving and write SOMETHING. Are they the posts I'd have written had I had different circumstances that gave me more time and energy? No, they're not. But it's a great illustration for this particular prompt - because I'm having to let go of that notion and just embrace the fact that if I'm going to participate - THIS is how the posts will be.

And on that note, I'm wrapping up this post, because I have a rehearsal tonight so dinner has to be early so I can eat before I go and it's 4.30 and I need to make a coleslaw to go with the chicken we're having.