Pacing

[LouLamb]

Hey guys,

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 ?

[honeybug]

Xxx

[Horsewhisper]

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

[LouLamb in reply to Horsewhisper]

Thank you .

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.

[Horsewhisper in reply to LouLamb]

Super stuff, hope it all goes well for you xx

[suzannah16]

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

[LouLamb in reply to suzannah16]

I never know how much energy I have because I end up waking up tried !

I normally start to feel my eyes going about 7pm .

[suzannah16 in reply to LouLamb]

you last that long? my eyelids start to droop about 3pm

[misty14]

Hi loulamb

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

[LouLamb in reply to misty14]

Thank you maybe I will go to the doctors and ask about a slower reduction . Knocking off 5mg is a lot in one go x

[misty14 in reply to LouLamb]

I would Lou specially as you have got returned symptoms. Good luck. Xx

[LouLamb in reply to misty14]

I went to doc and he just gave me co codamol

[misty14 in reply to LouLamb]

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

[LouLamb in reply to misty14]

I did but he said to ask the consultant as he isn’t a specialist.

I’m not going to bother now. My consultant doesn’t get back to me I don’t even have the number now.

Thank you hoping the appointment will be good x

[misty14 in reply to LouLamb]

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

[Paul_Howard Partner LUPUS UK]

Hi LouLamb ,

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/...

[LouLamb in reply to Paul_Howard]

Thank you will definitely have a ready ! x

[baba]

Good luck for Tuesday in London!

[LouLamb in reply to baba]

Thank you x

[Shorthouse]

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

[LouLamb in reply to Shorthouse]

Thank you , I’ll have a look x

[Shorthouse]

P.s all you peps who work with this vile illness are heroes in my eyes. X good luck at docs x

[LouLamb in reply to Shorthouse]

I think work keeps me going most of the time.

[exFatigue]

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.

Best of luck, take care, and be kind to yourself.

[LouLamb in reply to exFatigue]

I like the sound of scoring points. I think I might try and give that a go .

Thank you