35/52 – Trampled

Another tough week. Fighting what seems like a losing battle.

Acceptance and expectations

This week’s photo is of another doodle, which I then apped. 

These two words have been cropping up a lot this week, probably because I’m struggling with both of them… A chronic illness alters all of your expectations big time. It also keeps moving the goal posts till it’s pretty difficult to predict what little you will or won’t be able to do from one day to the next.

BExpectations have to shrink down to the size of very small things, and they still get trampled over by the illness. You try to accept whatever additional crap life chucks at you but there’s this little piece of your mind that refuses to let go of what things were once like. So although the expectations have shrunk – the ability to accept that shrinkage and loss feels like an un-winnable battle. Plus it’s an unfair battle, where the odds are all against you.

You spiral downwards. 

The light at the end of the tunnel winks out.

What’s the point of making plans when they almost always have to be cancelled?

What’s the point in eating anything when your body will invariably decide it can’t digest it? Plus, who has the energy (or the inclination) to attempt to prepare food? I’ve no appetite – probably because my body finds something to complain about almost everything I eat. I’ve had a problem with potatoes for a very long time. I know that the nightshade family are a problem for many fibro sufferers. I began to suspect that i was eating too many tomato based meals so I eliminated them from my diet. The other day I had a sweet and sour ready meal…and the pain! Oh. My. God. The magnification of joint pain was truly awful. 

Then there’s the constant sleep deprivation. The more tired i get the worse the fatigue is and the worse the fatigue is the worse the pain gets…and the coordination and the brain fog…it all ramps up in direct proportion to how much sleep is lost. And the tireder i get, the harder it is to sleep…and I could go on listing the challenges, but basically, right now, I’m at the point where i’m thinking – Whats the point? Truly – what is the point? This isn’t a life, its an endurance test. I’m not particularly competitive, so I’m quite prepared to admit defeat. 

Game over man. Game over. Lets reboot this sucker…


(The app I saved this from didn’t have a credit for this – i’ll try and google it at some point.)

Right now, I’m too tired and depressed to look ahead. Or even back for that matter.


I decided to leave the above as it was. Right after i wrote it, i managed a THREE hour nap! Unheard of. Afterwards i felt a whole lot better and much less bleak. Thought that this illustrated nicely how much impact sleep loss has on, well, pretty much everything. I’m still feeling fed up etc but I am at least managing to stay more fully present and feeling less bleak.

This is one of my favourite quotes,

Not Einstein!

The very lovely @wakingdreamart tweeted this link last week – I’m majorly disappointed to discover it’s not Einstein…



  1. Sorry you’ve had such a rough week Sand. I think the battle for acceptance of “how things are” is particularly difficult with illnesses that fluctuate. There are no clearly defined boundaries of what is possible and what is not, so it’s difficult to adjust our expectations to our abilities.

    Wishing you sleepful and restorative rest whenever you need it.

    • And to you too lovely lady πŸ™‚ thank you.
      Yes, thats it exactly – its all too variable. Plus once the adrenaline has kicked in to help me to do anything I get no warning that I’ve done too much until its too late. (And i really resent clock watching and having to stop πŸ˜‰

  2. Ooh, sending you warm hugs. I wonder if the act of writing down how you were feeling helped something shift inside, which then helped you to sleep. I find – and I don’t do enough – writing stuff out can help me relax a little, it seems to be like a form of letting go.

    The other week I discovered that doing some art helped lift me out of a low mood, though 20 minutes after I finished I went back down again. My therapist suggested that maybe it was something about allowing myself to play. I also think it was because I was expressing what was going on for me but in a visual way.

    • Yes i think you’re right, expressing the feelings whether visually or in writing def helps. I need to try to do more…
      And play – excellent point, we need to do more of that too. A kind of waking meditation that occupies the mind without tiring it. Maybe playing a game on the iPad can do a similar endorphin thing to walking when we cant walk…?

  3. I’m also discovering just how much poor/lack of sleep contributes to my illness and overall health…..a constant refrain is if only I could get decent quality sleep every night, I’m sure my illness would be much less debilitating……not to mention managing depression.

    I’ve always journalled and it has helped me hang in there during the really low days although I know it’s not for everyone, and like Alison, I’ve recently discovered art and while I’m not very good, I have been happily surprised at how calm and centred I feel afterwards….for me, it has a better affect than meditation.

    I hope things continue to improve however slowly πŸ™‚

    • Thanks Wendy πŸ™‚ you’re both so right – creative expression helps to release and acknowledge the feelings, something we tend not to do enough of. So glad you’ve found something that helps πŸ™‚
      try not to judge what you create, its hard i know, but the more often you follow your intuition and subconscious the clearer your voice will become. Or so they say πŸ˜‰
      Thanks for stopping by and for your support – it really does help. Sorry for the delay in replying – I’ve had another meh week.

  4. Still a pretty brilliant quote, I think. Isn’t it sad though, how apparently people think they need to attribute a quote to someone famous for it to have impact? I’ve read many wise things attributed to people I don’t have a clue about, but their words still ring… This quote speaks of acceptance, of the things we’re not, and of embracing what and who we are and what we CAN do. And that’s hard. Often it doesn’t even have to be someone else who tells us we suck – I know I’m pretty capable in that department, myself. But working on that πŸ˜‰

    I appreciate you leaving the first part of your post there to read, and then light it a little after your nap – it makes me sad that you feel so awful, and I realise that sleep isn’t a cure, but I’m amazed at your ability to swim back up again… Big hug!

    • Thanks for the support and encouragement lovely lady! <3 My ability to swim back up does vary πŸ˜‰ just like everyone else, but I am HUGELY grateful to the SSRI which has literally transformed my life. I wish I'd known years ago that my problem was low seratonin...

      I TOTALLY agree - if a quote/comment speaks to me, it matters not a jot who said it. I too wish there wasn't this worship of celebrity that makes a 'famous' persons quote apparently more worthwhile. Such nonsense πŸ™

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