I just wanted to ask how you lot pace yourself through out the day and week ?
At the moment I’m reducing steroids and are on 10mg and then 5mg next week. Since I reduced to 15mg last week my pain has come back bad. I had awful knee pain last night and today my back is hurting again and legs are so achy.
I think I’ve been over doing it at work because I had felt so good I thought I was invincible! I’m normally good at pacing myself but clearly hadn’t done it very well over the last few weeks. I’m worried now because I’ve got my appointment in London on Tuesday and if my pain doesn’t start picking up that travelling will finish me off.
Any tips for pacing yourself? What do you lot consider as a successful day ?
Written by
LouLamb
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Hi LouLamb, I know we are all different, but I thought I would share with you about what works for me with regards to pacing. If I have a big day out somewhere that requires travel and a bit of effort to do something, I make sure I have nothing planned the day before or the day after and have a decent daytime rest during these days either side of the big day I am needing energy for. In this way, I know I can get through the big day and the rest of the week reasonably well. I know that it is easy to use up the spoons when we feel we have a stack of them in front of us and it’s great to have that delicious energised feeling! But as we know, it doesn’t last for that long and we have to find our optimum plodding mode. I also take a couple of Anadin Extra before the journey to help keep me perky and reduce the pain for a bit. A successful day for me is approx 1.5 hours travel either way (train or car) and 1 to 3 hours work/client meeting/social. I hope this helps and sending you energy and good luck for your appointment next Tuesday xx
I’ve got Monday off work because we have an occasional day. I had already planned to take my mum shopping so said to her we can do a short trip. Then I’ve got my appointment Tuesday and work on Wednesday. I think not having even at work on Monday and Tuesday I should be able to get through the rest of the week.
When I was on steroids I had days when I felt invincible. I even cleaned out a garden shed manically killing even the largest of spiders. [not me at all] I have found pacing myself one of the hardest things to do as I don't know how much energy I have each day as it can vary quite a bit. Some days I feel pretty good but by the time I am washed and dressed I just want to go back to bed, other days I just potter around doing little bits here and there. I just try to go slow hoping to use less energy than when doing things quickly
Reducing steroids is hard and no wonder your pain is back trying to work as well!. You could think about a slower steroid reduction and it's recommended once you get to 10 mg and then having to go lower after that. a mg a fortnight or month is kinder as I find the lower the steroids go the more tired I get and other symptoms return. All the best for your London appt, hope it goes well. Xx
Did you ask him Lou about lowering the steroids more slowly?. I take co-codamol for pain, it does help. Good luck for your London appt. keep us posted. X
Oh Lou, that's just stupid of your GP because they deal with steroids themselves thru asthma and other conditions!. They can say how best to reduce steroids and give you the 1 mg tablets!. It doesn't have to be from your consultant.Has your Rhrumy dept got a nurse you can phone?. Fingers crossed for Tuesday for you. Hope your resting this weekend. Xx
Action for M.E. have an excellent booklet about pacing which may be worth a read. It is written for people with M.E. but the advice still applies - actionforme.org.uk/uploads/...
I realise we are all different,I take cherry active (Amazon)it helps my knees,hips etc.i stop it sometimes to test it .pain comes back.read about it quite interesting.tumeric too x
The main things that work for me are resting before I start to get tired (really difficult when I'm in invincible mode!), and something I learned from a fatigue management course, is to give every activity a score based on how draining it is. So if you're allowed say 10 points in a day, and something like traveling will use up 6, then only plan to do other activities that will use a maximum of 4 for the rest of the day. It's pretty tough to be so regimented, it takes a while to work out scores for different things, and obviously we have different energy levels on different days, but I still find it useful, particularly if I've got something different coming up and don't want to have a flare-up afterwards.
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