Oh just a little bit , ooh just a little bit more - please!

Referring to energy.....

Just beginning to realise that I can't do everything as well as I did, as quickly as I did and the real difficulty in learning to pace ones self . Just climbed into bed after cooking nearly all day, struggling to get all the girls presents downstairs ( without waking them!) - knowing that already, I can't keep my damn legs still and that sleep is a million miles away!

Really looking forward to tomorrow and it is so very much worth all the effort ( and pain) - just hope I've got the energy to enjoy it all.

How do others manage to pace themselves/ continue to manage Day to day stuff- work, kids, home etc? Any tips would be hugely appreciated!

14 Replies

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  • Do 15mins then rest for more then 15mins. Break it down into manageable portions, and anthing you find difficult get hubby or someone else in the house to do it for you. If your girls are of a age to help then rope them in to helping you,make it a game for them. Say things like mummy needs you to do this for me and get some sweets if you want to give them when they have completed the job. Get hubby to help as well,you can give him some sweets as well if you want!!!!!! Make a game of it for your girls. Merry christmas to you and your family and get them all to help you.xxxx

  • I too struggle with pacing. I had gotten pretty good when it was just the MS. But when the RA and fibro diagnoses came in I could never longer do work and family life and I was driving myself into the ground. After trying for a couple of years I could no longer work. So.....

    Even though I was sad to leave work. I liked the people, the job, and the salary. But I thought there would be a silver lining in that I would be able to become adept at pacing for my energy level and guess what? Sometimes I am not too bad at it and other times I am not very good at all. So be patient with yourself you will become the most expert at knowing your limits and what you need to do to guard yourself.

    When I finally realized working within my limits was not giving in....if they are your limits they are you limits. It's an "is" for you.

    Things that helped me were not expecting as much around the house needed to be done they I fought it should happen. I borrow, trade for and sometimes pay for help I need. Keep up with exercise; I am convinced it is as powerful as some of my drugs. Meditation and simple yoga are also helpful.

    Good luck. You will learn to do this for yourself. Forgive yourself for what you cannot do. It's okay.

  • That is an important point Multijo - "if they are your limits they are you limits. It's an "is" for you." That is true in so many venues of our lives.

    My sister lost her wonderful husband a few months ago, and our mother (who lost her husband of 42 years back in 2012) keeps telling her it is "time to move on". I keep telling her that only she can decide that. I think that is especially true with this disease.

    Your other point is excellent too. I used to clean house every week, top to bottom, while working full time, going to school, etc. etc. etc. Now I clean when I have to, and again when I can or want to. While the house is never really "dirty" my standards are not the same as before the RA.

    And yes, we pay sometimes for help. We have 1/3 of an acre of land here and it is covered with leaves in the fall and winter. We just paid a man on Wednesday to rake and bag all 80 bags for us. It would have taken the two of us two days to do what he did in 6 hours (he had a very powerful leaf blower - big difference...).

    Hope you are having a great Christmas holiday.

  • Eiram, it's obviously love that keeps you going. I hope you and your girls have a wonderfull Christmas ,be kind to yourself and put your feet up when you can.

    I'm very fortunate my wife and boys ( now middle aged) look after me. It must be difficult having this awful R.A. With a young family.

    Kind regards and seasons greetings.

    Mike

  • What lovely kind words - I'll get my feet up enough tonight (I hope!). Wishing you and your family a lovely, joy filled day.

    Marie

  • Hi Eiram50. I always prided myself how clean my house was at Christmas and how I had everything under control. That seems like another life time ago now. Not saying that the house is dirty or anything like that but have just had to come to terms that everything cannot be as perfect as I used to like it. This disease has put a stop to all that, now, like everyone says, you just need to pace yourself and do what you can when you can. Houses will be here when we are all gone. The main thing is loving your family and being glad we can still enjoy Christmas with them. Hope you have a great Christmas with your loving family. Xxxx

  • Well that's all the family and grandkids away home now and although I love them to bits it's great to get the peace and quite back , just me and my lovely wife❤ Vegging out watching TVs and she made a great feast for all off us today considering she was working till 1 today I love her to bits and am grateful as she looks after me so well since I was landed with RA ,OA and Angina hope you all had a lovely day take it easy xxx

  • Thank you everyone for your kind words and advice. That's the last

    Of family and friends gone - they arrived mid day and its

    Been non stop with three options for each course ;

    I am more than shattered! Having said this, I e loved every minute

    And the joy for everyone, kids , family, friends - was worth the pain and exhaustion.

    It's been a tiring, but fantastic day and no matter how much I failed in terms of pacing myself or how physically depleted

    I'll be tomorrow , I'm glad I pushed myself

    And everyone goes home happy. Hope you all had a wonderful

    Day. God bless x

  • 3 options per course no wonder your shattered ,your family and friends are very lucky having you run a Restraunt on Christmas Day .

    Pleased everthing went ok now put your feet up.

    Ps please let me have your address then l can book in for next Christmas.

    Regards Mike

  • Haha, the more the merrier mike!

    It sounds ambitious but I do it every year- but this time. For the the first time, it did feel a bit ambitious ! However all went well.

    Hope you and everyone else had a great day!

    Marie

  • You are such a wonderful mother for making Christmas magical for your young children. I take my hat off to you... I can't imagine dealing with RA and young children, especially at Christmas!!!

    Me, on the other hand, what's my excuse for being exhausted? My kids are grown.....Christmas day has just ended in Western Canada. What was I thinking when I decided to host 2 Christmas dinners?...I need to get my head examined...

  • Now two Christmas dinners would be beyond me!! Hope you enjoyed your day and everything went perfectly for you.

  • I did have a wonderful time. I just did too much and I am relaxing today.

    I've been feeling better since the mtx has started to work and eveyone, including me, thought we could do Christmas like we did before RA raised it's ugly head...lol..lesson learned. No more hosting both xmas eve & xmas dinners for this 50 year old lady. :)

    Merry Christmas to you and your family Marie!

  • Isn't it funny......

    I felt tired after the festivities of Christmas Day but today I feel a bit like Ive been hit with a truck; talk about delayed reaction! Bugger of it all is there's no time to really rest as I'm back to work tomorrow.!

    A lesson learned, I think. No plans for the new year except for ensuring it's a quiet one! I wish each and all of you only good things for 2017!

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