This got me thinking. On a personal level, energy (or lack of) is something that I have always been preoccupied with too. I think it’d be fair to say that most ‘loopies’ have issues with low energy as it is one of the more universal symptoms of lupus that can even be problematic when all other symptoms are under control. Doctors find it difficult to treat and ‘loopies’ find it hard to live with. I find it hard to explain to others because when you say you feel ‘tired’ it just doesn’t cut it and sounds a bit lame. In reality, the word ‘tired’ just isn’t right and that’s not only because it’s a gross understatement, but because it doesn’t accurately depict the unhealthy feeling I am trying to convey. I don’t think there is a word for it or if there is I don’t know it, but I guess if I was being more accurate, I’d describe it more like heavy waves of feeling inexplicably ‘drained’ or as being peculiarly ‘bled dry’, ‘dissipated’, ‘consumed’, ‘siphoned’, ‘sucked’, ‘spent’ or ‘depleted’, or all of the above! Perhaps ‘loopies’ could say it’s like suddenly ‘all their get up and go, has got up and gone’. But all this would be a bit too much to go into.
But I diverge. The point is: managing this personal ‘energy crisis’ is important to living well with lupus, as doing so effectively enables us to get on with life more as we would wish, and I have found that it has been helpful to use the two approaches being applied to the global crisis – energy saving and finding alternative energy sources – to think about ways to approach my own.
On these lines, here are a few examples and tips that I’ve discovered help me manage my energy, but there are many more:
Energy Saving
As energy is limited, spend it wisely …
- View energy like money in a bank – you only have so much so decide carefully how you are going to spend it
- Rest is like credit so remember to use it to ‘pay back’ what you take out – a big overdraft leads to trouble
- If you think it is worth it, a strategic ‘blow out’ is OK every so often – it’s good for the soul!
- Shopping and banking online
- Getting domestic help when necessary (sometimes paid and sometimes from kind family and friends)
- Learning to say ‘no’ when things are getting too much (in the nicest possible way!)
- Resting well – find the right place and designate the time, and make sure others respect it. The quality of rest counts.
Alternative Energy Sources
- Yoga
- Original Source Mint Shower Gel: http://www.originalsource.co.uk/
- Neal’s Yard Remedy to Roll For Energy:
http://shop.nealsyardremedies.com/product/1689/Organic_Remedies_To_Roll_For_Energy - OK, caffeine in moderation, but they said in the war ‘tea revives you’ and I am a great believer! I live by ‘a nice cup of tea’.
- If I am feeling whacked and have to suddenly pull myself together, I find brushing my teeth is a good instant ‘quick fix’ boost
- Eating breakfast. It is not called the most important meal of the day for nothing! No excuses: make time! If you do it every day you will wake up hungry looking forward to it. Makes a real difference to energy levels throughout day. Anything with oats is especially good. Using the environmental analogy this can be seen as a highly sustainable energy source
And finally, remember that as well as saving and boosting physical energy, boosting emotional energy helps you get by. For me, this could be nattering to a friend on the phone or making something nice for a loved one (yogurt cake and flapjacks are my specialities). Equally, avoiding people who drain you emotionally is a good idea – energy is too precious to waste on negative people.
I’m never sure if anyone reads any of this (!), but if you are I'd really appreciate any more ideas for ‘energy savers’ or ‘alternative energy sources’ so please feel free to leave any in comments!
9 comments:
Hello Daisy
Yes, I am reading all posts and must say that I've picked up some goodies to help me explain things to others ( and myself!) I particularly liked the traffic light system, but do find it really hard to cope with being asked how I am and then without waiting for an answer, telling me , how well I'm looking - errgh!
As for the 'energy crisis' I think you have it spot on. It is the quality that counts, so hence the place/space is important. I have problems sleeping at night so feel a bit tense about dropping off during the day and my anxiety about it tends to make the whole situation worse. Instead of relaxing I struggle to read - useless. Solution: I've bought a meditation CD that lasts about 45 mins. I lie back and drift off or away or whatever and then when it is finished and I come to I'm pleasantly relaxed enough to read or listen to music until I'm feeling I've had enough.
Don't stop writing, we are out there. Gilly
My computer has just reminded me with a little bleep and a message that I'm running on reserve of battery. I could do with that being wired into my brain as I often overide my body's warning signals.
G
Hi Gilly
Good to hear from you and thank you very much for your comment - I enjoy the process of writing anyway, but it makes it even better to someone out there reading it.
I am glad you raised the subject of insomnia because it is something I sometimes struggle with myself and something I have been working on (definitely material for a future post!) Isn't it something of a paradox that we are unable to sleep when we are so tired most of the time? I agree - meditation CD's are really good for winding down - must get mine out again.
Please keep reading and commenting and keeping me on my toes ...
Daisy x
Dear Daisy,
I absolutely love your blog. I was looking for a long time for a fellow "loopie" which can inspire me to feel positive inspite of this life-changing experience. Here is my abreviated lupus story (I will expand another time). I felt the joint pain for the first time in 2006 (I was 30 at the time). Since then the symptoms have become stonger, blood tests deteriorated (the whole deal ANA positive, high ESR levels, low C3,C4 complex levels, fevers, cold sores etc) and finally in January 2009, I receivd the lupus diagnosis (I guess enough criteria have accumulated over the past 3 years for the rheumatologist to make the final lupus diagnosis). I nodded in agreement so many times while reading your posts that I finally had to introduce myself. I am not a blogger and I never commented on a blog before, but after saving you in my "favorites" for a while now, I had to make my presence known. I also loved your "energy crisis" post and I want to tell you to also google the "The Spoon Theory" by Christine Miserandimo because I liked it too. Thank you fellow "loopie" for sharing! Please continue. I will be here to read your posts and to share as well.
Thanks for your deep concern about our environment. Saving energy not only saves out pockets but also pur environment. Go green!
Hi Mirela
Seeing your kind comment has made my day! It is really good to know you are out there as it was not so long ago I felt like I was the only one in this boat.
Although I am sorry you have lupus (it's far from ideal isn't it!?), I am glad you finally got a proper diagnosis. It means you can stop fearing you are mad or a hypochondriac (!) and start getting sorted, which by the sound of it, you are already well on your way to doing.
Anything you are able to add to this blog is much appreciated because it would be far better if it wasn't just limited to my experience. Also, I personally welcome anything new to try!
Thanks for introducing yourself and keep in touch.
Daisy x
ps yes ... someone else put me onto the 'spoon theory' and I agree it makes a lot of sense.
That picture of the animal is adorable!
I knew the cold shower commenter was spam without even reading the name given. A loopie taking an ice-cold shower. Ha! That's a death wish.
This is my first time to read your post. I'm only recently diagnosed with lupus. My daughter actually recognized the symptoms and sent me to the doctor. I had "the rash" on my arms and neck and face. I was hurting in my arms .. Sure enough LUPUS. Anyway, I can't get in to the rheumatologist for another two weeks, so I've been on the internet trying to get some encouragement and I found you. Most of the comments are old. I hope you are still writing.
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