Low Energy Reserves

 

disability shadow

I’ve been on low energy reserves for weeks now and it’s starting to get a bit frustrating.  I have work to do and clients waiting.  I am doing little bits of things – watering my plants, feeding my tomato plant, a bit of baking – but it’s very wearing very quickly.

I tried to do some painting a couple of weeks back, thinking perhaps I was low motivation not low energy.  I got a little bit done but soon I was messing up really badly and realised just how exhausted I was.  Still not sure how I’m going to fix the mistake I made but I’ve been too knackered to think about seriously.

Paul says I shouldn’t underestimate what effect our holiday had on me as we did stuff everyday – more stuff than I had done in at least 6 months before.  Plus the hot weather has an effect.  Plus hayfever does too for me.  But I feel like a bit of a failure for being so tired day after day and not being able to kick the exhaustion.

beside the seaside

I still maintain that the LDN is helping.  Although it’s hard on days like these to see that is when I feel so wiped.  But I suspect without the LDN things would be very bad indeed.

Really I should be used to going with the flow on these things.  No point trying to force it when the body says no.  You just lose more by pushing it.  But I feel riddled with ME and I don’t like it.  Goes to show that the LDN really has been boosting me more than I realised.

It could be this latest downslide is due to being back on eating wheat, despite testing negative for celiac.  When I started eating wheat everyday again in prep for the blood test I started to feel sluggish.  I don’t know if my body got past that or whether sluggish became part of my normal everyday parameters.

So I have to kick wheat again.  Hard now I’m enjoying all that wheat has to offer.  But if it is contributing to the knackeredness there’s no question of the benefit of sacrficing lovely tastes.

i'm reading grave sight

I’ve started reading again.  I wonder if the reading is contributing to the exhaustion.  Small things can add up and even mental stimulation is exertion.  But I do find even when the body feels wiped at the moment I can read a bit of an easy fiction book.  So it’s hard to know if that it turn is making me knackered or a welcome distraction from it.

my garden 'relaxer'

What I do have is my chair for the garden in which I can recline.  I can be lying down (just about) and supported and secure at last.  I decided to look at it as an investment of disability equipment and paid a bit extra to get a better quality one with a super squashy cushion and sturdy frame.

The only problem is I’m struggling to give in to relaxing.  A lot of the time all I want to do is eat or sleep.  So my auto response is to get busy to prevent me from sleeping in the daytime (something programmed into me when I was very young I think and so hard to break).  As a result I find myself wiped and restless at the same time.  I need to relax but I want to pace.  Of all the times it should be easy to let go and nap *this* should be the easiest time to do it.  Sigh.

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8 Responses to “Low Energy Reserves”


  1. 1 Cusp July 21, 2010 at 2:18 pm

    Well I’d make a bet that the wheat has something (if not everything) to do with it. I was tested years ago for coeliacs and came back neg so I ate gluten stuff but still felt tired. It wasn’t the same as M.E. tired — was a general sluggishness and a distinctive feeling in the gut and other symptons like itchiness and skin stuff and also the more non GF stuffI ate the more I wanted/craved. So I went GF again and soon got rid of those symptoms ..well over a few weeks. Think I said before that as fas as I know the test for coeliacs etc. aren’t that conclusive anyway — even when you have them done in hospital like I did…let alone home kits. Know several people who have had to have the hospital test twice or more over a good many years before they tested positive.

    Hope you feel more yourself (well as much as you ever can) very soon and can pick up the painting etc. with enthusiasm.

    • 2 rachelcreative July 21, 2010 at 5:30 pm

      Yep. It’s like a drug bread, pastry, cake! Want to try and get back to almost wheat free like before and then once settled (especially if energy comes back) try some gluten free wheat stuff to see what happens.

      Made buckwheat wraps for lunch and remembered they’re pretty tasty actually. And the almost wheat free days I’ve had I’ve felt a lot cleaner, less polluted, than mega wheat fests.

      Yep. Kick the wheat.

  2. 3 Shelli July 21, 2010 at 5:28 pm

    That’s a constant quest, isn’t it, trying to find the culprit behind our malaise. How many times have I taken to looking into the corners of my life to find out why I’m feeling crappy. I do know you don’t have to have Celiac’s to be affected by gluten. And it sounds like everything else you mentioned — the vacation, reading, etc — is having a cumulative effect. Rest up, and I hope you feel better soon. (Haven’t ever heard that advice before, have you?)

    • 4 rachelcreative July 22, 2010 at 2:08 pm

      Thanks Shelli. You’re right. Funny how these things sneak up on us when they’re so blumin obvious. And how sometimes there just isn’t a simple answer but you have to go with the flow anyway.

  3. 5 katy July 31, 2010 at 10:52 pm

    Judging from what so many are saying on their blogs, lots of us are suffering from even lower than usual energy reserves right now. I know I am, too. Hope you feel a little perkier soon.

    I love your garden chair…I’ve been lusting after just the right one. So many aren’t comfortable (to me anyway) when they are semi-reclined. Haven’t been out to look since April…so probably won’t get one this year.

    I love being able to spend time on my deck with my container garden and watching the birds and butterflies in the yard. I’m having a hard time being upright though, so a nice reclining chair would be great. Glad you found a good comfy one.

    Artist question…do you find your arms get too tired to wield a brush? I had to mostly stop painting when I got sick. It exhausted me so much holding up and moving my arms. I miss it.

    • 6 rachelcreative August 1, 2010 at 3:17 pm

      I treated myself on the garden chair in the hope a more expensive one will last longer. It’s certainly got better cushions than the cheap ones from Wilko and Argos.

      This is the chair I bought although the cushion isn;t the same as the picture
      http://www.gardenxl.com/s/glencrest-tubular-relaxer-chair-with-sturdi-plus-cushion/23380/Product.aspx

      As for the artist question yes my arms do suffer. For a long time I couldn’t paint on canvas for just that reason. My arm muscles would give way and I couldn’t physically move and hold the brush.

      I started small. I got a little A6 sketchbook, an artist pen (so the ink won’t run) and I had a little travel watercolour pallette so I got a Pentel Aquabrush which I keep filled with water. I would do a little drawing with the pen and add colour using the aquabrush and watercolour (that way you don;t need to get a pot of water – you just wipe the brush on a tissue to clean it and dip into the next colour).

      This set up was small enough to have close to hand, light enough not to be a drag and aiming small meant I could do just a little and achieve something. It doesn’t have to be a big grand painting to say something or to speak to people.

      As I got a little better I experimented with translating the kind of work I’d established in my little sketchbook transferring to canvas.

      I also found a set up that made things as easy as possible for me so I can sit on the sofa and do an hour here and there without massive effort to set stuff up. Visitors are used to seeing paint, brushes and half finished work in my lounge 🙂

      I still get lots of days where I haven’t got the stamina or the co-ordination or the brain co-ordination to apint proper – or even to doodle in my little sketchbook. I’ve not done much art for 8 months now and it’s hard – i miss it too.

      Once I tried to do what I could instead of worrying about what I should be trying to achieve it started to flow and it built from there.

  4. 7 Sue Jackson August 1, 2010 at 9:30 pm

    Sorry you’ve been feeling so run-down. I love you new chair – it looks so cushy!!

    I know what you mean about how hard it can be to rest when you want to be active and get things done, but it’s like you said…you just have to go with the flow. This is where you are right now, but it won’t last forever. Give in and rest and soon you’ll be feeling better again.

    Interesting about the wheat. I had to give up dairy a few years ago, but I’ve never tried eliminating wheat – I think I’m scared to!

    Hang in there – lie in your garden and enjoy your book!

    Sue

  5. 8 katy August 3, 2010 at 7:39 pm

    Thanks so much for sharing about how you have handled things with your art and CFS. I love hearing how other people problem-solve and compensate. I’m sorry I’m just now responding…I was so foggy I couldn’t string together what I wanted to say after I read it.

    I’ve been so excited since you told me, though. I’ve had many happy hours thinking about it, looking for the Pentel water brushes online (and other pretty goodies while I was looking, lol), thinking about the supplies I have, and planning.

    While I was Googling the brushes, I found YouTubes about the brushes, also people sharing their sketchbooks, painting, and other fun things like that. I didn’t realize there was so much art-oriented stuff on YouTube. Neat things to stimulate your mind when you are down &/or not quite able to do it yourself at that moment.

    I don’t have any really small sketchbooks right now but I had an idea about tearing a page out halfway down in a larger sketchbook (not all the way), tidying the edge, folding it into quarters (still attached in the book), and drawing/writing on all the quarters…a little at a time. I have a fascination with illustrated journals and altered books, too. 😀

    About 2 years after I first got sick, I started an altered book journal in a hardcover novel about 6″ x 8″. I primed some of the pages, painted others with acrylic paint for base, did collages, found poems, drawings, small paintings, etc. and journaled in it, as well. All working on a small scale. Sometimes all I did was slap the paint on to prep the page but laying down the color made me ridiculously happy! There are still lots of empty pages to work on in it. I’m going to go back to working on it, I think.

    Thank you so much for sharing with me…it lifted me out of a down time and made me start thinking art is still possible again. I’d love to compare notes on arting more any time you feel like it. For example, you were talking about your set up in the lounge…I’d like to hear about that some time if you feel like it.

    I think even sharing small ideas and strategies helps so much. We are foggy so often we can’t always think how to do something. Putting our heads together and sharing helps a lot. 😀

    Big hugs…thank you,
    Katy


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