Positive thoughts of what to do on not so good days

Being lupy loo on a daily bucket load of drugs I have good days when I can almost call myself normal and not so good days when I have to respect my condition and succumb to its restrictions on activity. However I now use these days to do pleasurable things with no guilt. I save my favourite books to read, listen to all the afternoon plays on I player, snuggle with the cat and a hot water bottle and chat to friends. I no longer feel guilty and plan what I am going to do on good days. One of my weekly highlights is doing hydrotherapy stretching exercises in lovely warm water. Thoroughly recommend. Local hydro pools listed on Internet. It's amazing what you can do with a woggle to aid stretching! What do other people do?


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13 Replies

  • Sounds fab! Your right the only way to get through is to do things that don't need strength but help relax!

    I have two little girls aged 2 and 1 so I hardly get any me time. But when I have no more strength to be super mum on comes netflix and we watch a nice kiddie movie with popcorn so we can all have some peace. I also read up things online or I listen to religious meditation to relax myself.

  • Brilliant! My specialist nurse told me to celebrate the positive so sounds that's just what you are doing.

  • Wow, I'm loving this positive attitude, maybe we could take a leaf from your book and learn to embrace the downtime instead of looking on things negatively as its' so easy to do.

    Thanks for your post, i'm now thinking of things to stack up and do on my rest days.

  • How I love this post and this is my approach as well. My not so good days list includes watching dramas and films on Iplayer. Watching dvds I get for £3 at supermarket then swap! Reading but only if I have not too much pain and can concentrate. Baths with lovely bath foam and candles. Long Facebook chats with other lupies at home. Snuggling with my cat. Daydreaming. Hatching plans in my head for the Good Days. Hugs to allx

  • It's great to feel good! We are all special people who are allowed these treats to enable us to feel positive about our condition. I have also learnt to forgive others when they do not understand how bad it can be sometimes as how can you explain so much pain in words? Keep smiling and remember you are special!

  • Sarah, they sound so similar to my not so good days. I love to read but the concentrating side can cause problems whereas with a good film I can totally switch off. It is great to just not realise we have to just go with the flow on our not so good days. Yes a good post and good to know we are all of a similar mindset whilst the rest of the world beavers away.

  • Just love your'e attitude :o) I know exactly what you mean and have recommended your'e post I too save my favorite books for bad days and recharge batteries for the good days. Thankyou for posting It made my day a lot easier. We need more posts like yours. Take care.

  • Well done you! I needed to read this today because I tend to feel guilty all the time! I saw my cranial osteopath today and was exhausted ofterwards so I slept ALL afternoon then picked my son up from school so was feeling guilty again but now I feel better after my sleep and after reading your post I'm now pleased that I've just cooked a lovely dinner and will buy myself a good book for my next bad day!!! Thank a You xx

  • Brilliant! May be we should all start a reading club but make sure we allow sufficient time to read around all our sleep! I crashed out for two hours this afternoon and slept just so deeply. Hair brushed, supper prepared I can now sparkle for a few hours! So great to share our feelings of guilt and banish them. X

  • Yep...totally agree with all of the above, I used to feel SO guilty that things that I had planned to do (mainly housework) had not got done on bad days or during flares.... but feeling guilty only makes you feel worse...so now I just give in on bad days, read, relax and have a total sofa day!! I had one yesterday, I had my nearly 3yr old Grandson-and we just chilled and watched T.V-not ideal for him I know, but nanny was there for cuddles,questions and reading. I used to push myself so hard-worked nights-and sometimes stayed up for over 24hours (I had my own cleaning business) - and when I first got ill I could not understand what was going on-my body just shuts down-pain everywhere-it was literally like hitting a brick wall at speed!! Now only working 3 days a week-have my Grandson 2 times a week-and with my meds, my Lupus seems to be under control (hopefully!!!) BUT do still have THOSE days- I now accept them and even embrace them! xxxx

  • Hi reading your comment makes me feel there is life after diagnosis (just a week ago confirmed sle lupus), this was after three months of pure hell wondering how my body could go from climbing a fell to two weeks later unable to dress myself. Thanks

  • Totally agree with your hitting the brick wall feeling of tiredness. It is totally overwhelming and very difficult to explain to someone else how you feel. Just had my hour session of stretching hydrotherapy so feel I can conquer the world!

  • What a great post!

    I too have guilt free quiet days, I am very lucky that when I retired on ill health I was encouraged by my family to use some of my pension money to buy a hot tub for our garden, it has a log roof to protect me from the sun and is surrounded by trees with bird feeders.

    On those 'no spoons' days you will find me there, listening to the bird sing or listening to an audio book. It's a great place for stretching exercises.

    My pain is so much better while I'm in the warm water, it comes back when I get out, but at least I'm more relaxed for a while.

    I do let friends and family in too sometimes 😀

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