Enforced rest vs chill out time

I’ll make this quick for reasons that will become apparent. I wrote yesterday about putting myself into ‘Standby’ mode.I realised that I could’ve done a better job of explaining that after people told me to enjoy my rest and relaxing time, and that I’ve earned it. 

I’m not managing to do a great deal this weekend and I’m mostly lying about in bed. If you have a busy life working or parenting or whatever, then that might sound like an attractive proposition. However, I’m not happily ‘chilling out’. I’m stuck in bed because my body isn’t capable of doing much else at the moment. It’s frustrating, dull and impractical. Alas, it’s not fun. 

My symptoms are numerous and can vary wildly at any given time. This weekend’s particular version of ‘standby’ mode essentially involves feeling really ‘shite’, due to nausea, pain, palpitations and breathlessness, and with fatigue, some unsteadiness and blurred vision –  all part and parcel of my ‘spoonie-ness’ – and having to lie still to keep some horrible symptoms under some control. 

Screen/online time offers good distraction and company but can also exacerbate symptoms so I have to try to find some sort of balance. Lying down in a darkened room with no distractions or contact would help my body but would drive my mind insane. My mental health thrives on action and productivity. I have to somehow come up with a kind of happy medium. 

I’ve still got to do some things like eat and wotnot but that’s anxiety provoking because I don’t know how much attempting to do those things will exacerbate my symptoms. Sometimes I’ll be afraid to try, sometimes I’ll plough on regardless – sometimes I’ll get away with that, sometimes I’ll pay a heavy price. 

That all sounds so negative which makes it very difficult for me to say, but if I try to hide from or ‘sugar-coat’ the realities of chronic illness then how are people going to gain a better understanding? 

I am still … mostly … smiling :). My mood hasn’t plummeted as can happen when the body is struggling so much. I have hope that a better day is around the corner. To be honest, although I know it’s a possibility, I don’t think about the prospect that one is not as that would sure as heck make it more difficult to cope. 

Back into standby mode for me then and managing to do what I can in this ‘spoon drought’. 

Thanks for reading. Comments welcome as ever. 

Heart x 

11 thoughts on “Enforced rest vs chill out time

  1. Reblogged this on A Prescription for M.E. and commented:
    Great quick blog explaining to healthy folks how resting isn’t by choice and it’s not even a “duvet day”, it’s because we’re too ill to do anything and trying to will result in even worse symptoms. Having a chronic illness isn’t a chilled out lifestyle choice, it’s a debilitating.

    Liked by 1 person

    • Thanks so much for the reblog and great comment, Emily.
      I realised that people, although entirely well meaning, misunderstood my post on Saturday about having to rest and so yesterday’s post was born. It’s certainly struck a chord among other spoonies which is to be expected, I hope it goes some way to helping non spoonies understand.
      Thanks again for reblogging and retweeting. x

      Liked by 1 person

  2. Hi heart
    I too have ME and I understand exactly what you mean. I feel sometimes I am banging my head on a brick wall trying to get my family to understand. My sister a nurse says things like. Oh you’ll be better after you’ve had a sleep. Or no wonder you can’t sleep you’ve been in be in bed all day? I feel like crying screaming dying and pray that just one person got it. I guess though you need to have this terrible illness to understand it. To be honest I don’t understand it I just live it much love CQ

    Liked by 1 person

    • Hi Carole,
      Thanks so much for reading and commenting on my blog.
      I have Fibromyalgia but at first it was thought to be ME. I’ve been tested twice for an underlying connective tissue disorder, such as Lupus, but the results were inconclusive. I’m about to have more tests because new symptoms have emerged.
      I can understand your frustration, it is difficult when people don’t understand, particularly if they also adopt an unhelpful attitude. On hearing that it was thought that I had ME my then mother in law waxed lyrical about it being the thing where people think they are ill … “It’s all in their head.”
      I believe it’s important to share our realities as far as we are able, to try to break down barriers to understanding.
      Thanks again for commenting.
      Warmest wishes to you.
      H x


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