The best thing to help my chronic pain is also the most frustrating – what is it?

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Happy New Year everyone! I hope you’ve all had a good Christmas and New Year and have been able to rest and manage your pain as best you can over the holiday season. I did plan on doing a New Year New Me type blog post – share my goals and resolutions etc – but decided to not to do that this week. Instead I wanted to write about the best thing to help my chronic pain that is also the most frustrating. Read on to find out what it is.

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If you’re new to my blog, I basically have a sitting disability – I am in pain when I sit down. I also cause more pain (in my neck and shoulders) by avoiding my sitting pain, so trying to manage things can be extremely difficult and exhausting.

Obviously, it is impractical and physically impossible to stand and walk all day, although I do this a lot, so the best thing for me and my pain management is to lie down. I am still in pain when I do lie down, but it is the least pain so it is the best thing for me.

But – and here’s the frustrating part – I just want to go to sleep when I do lie down. It’s the position we sleep in; our bodies tend to relax when we lie down; and my eyes want to close.

Why am I finding this so frustrating now after suffering with my chronic pain since 2012?

Because I am very often falling asleep by 8pm, in the middle of a TV drama or Netflix programme. I literally cannot keep my eyes open. I often think, ‘oh, I’ll just close my eyes and listen to the TV’ – the next minute I’m fast asleep.

It’s so frustrating because by this point in the day I am really struggling to sit. My pain builds throughout the day and is always worse in the evening. So, yes I could try and sit on the sofa rather than lie down, but I’m in agony, extremely fidgety, and make my other pains worse by leaning forward or to the side.

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It’s also very frustrating as this is the time in the week that I have to spend with my partner. We both work full time hours, so our evenings are very precious, and what I call family time: the dogs are always with us and I want to make the most of this time and not be asleep.

It’s also frustrating because when I fall asleep in the evening, it usually means it takes me longer to fall asleep when I do go to bed, or I am more likely to wake upon the middle of the night. This has a knock-on effect on my pain management as it means I am more tired and find it even harder to manage my pain.

It’s also frustrating as lying down after having my dinner is more likely to cause more acid reflux (which I also suffer from) and this causes my hiatus hernia pain – which is incredibly painful. I describe it like someone is standing on my with a stiletto heel.

Maybe I need to be more active in the evenings and watch less TV. It’s hard because I am so tired and we all need some time to relax. Plus, I enjoy watching TV, especially a good Netflix drama. I’ll let you know in a future blog post if I do anything different and how I get on.

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Your thoughts

Do you have the same frustrations as me?

If you have pain when you sit down, how do you manage things?

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4 thoughts on “The best thing to help my chronic pain is also the most frustrating – what is it?

  1. Invisibly Me says:

    I’m not sure whether to laugh or cry at this, with you wanting to nod off because you’re needing to lie down. Since 2015 and my first op, I can no longer sit ‘normally’ in a ‘normal’ chair. It annoys me for many reasons, including having my nice office desk and chair go to waste. I spend my time in bed, propped up with cushions. My hips are still on fire but it’s more manageable. Coccyx and back pain are always there regardless, but a softer base to park my arse is somewhat more tolerable. It’s not as luxurious as is sounds spending the days in bed, is it? I don’t feel inclined to mention this to anyone because we both know the response would be along the lines of ‘of how lovely, you get to spend every day in bed’. Not lovely, not at all.

    I try to work like this every day and it’s not easy, though I only get the issue with nodding off when I have to stretch fully on my side and lie down (which I now do to read, though I seem to have increasingly less time or brain power for that). I’m afraid I can’t really suggest anything helpful here whatsoever, but please know you’re not alone. I don’t have the exact same experience as you, but I get what It’s like with pain sitting. It’s a nightmare and I kick myself regularly about how it’s another one of those things that I once took for granted. Another great post, I just wish I could do something to help because it’s awful knowing someone else is in the same catch-22 and similar pain.

    Caz xx

    • Alice says:

      I really feel for you Caz. It’s so hard getting comfy isn’t it. It’s comforting knowing that someone out there ‘gets it’ so thank you for commenting with such detail 🙂

  2. Despite Pain says:

    Oh, I empathise. Fortunately, I can sit most of the time, but often, the best relief comes from lying in bed. I do the same as you and nod off to sleep. I can feel my eyes getting heavier and the next thing I know, I wake up in the middle of a different television programme or film and it takes a few minutes to register that it’s not the same show. “Who are these people?” “What happened to the other family?” etc etc
    It annoys me so much.

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