Sometimes it feels that people are constantly telling me how best to ‘beat’ this thing. Doctors, nurses, specialists, family, friends – all telling me how to get the illness in check and under control. All offering up an opinion. All offering up advice. All telling me what I should be doing. All reprimanding me for not doing what they say.
But I try to do what I’m told, I really do.
I rest. I sleep. I take it easy. I take a break. I rest. I do things in moderation. I don’t push myself. I rest some more. I pace myself. And then repeat.
That last one’s the worst. Pace yourself they all say. How is one meant to ‘pace’ oneself in a normal, everyday life? What about the kids and family and home and work and pets and school runs and sports fixtures and all the other crap that comes in between? How do you pace this little illness into that gigantic mix? Please, someone, do tell. What exactly is meant to give?
Even if I do make myself do all the above – the resting, the breaks, the endless sleep, it still gets me absolutely bloody nowhere. All the pacing in the world and it achieves what? A couple of ‘good’ days to get stuff done and then a week of feeling like absolute shit while my body struggles to get over the unexpected exertion.
Moderation. There’s another word I hate. I am sick to death of trying to live a life in moderation. It’s like setting out to only ever achieve half of everything you want to do. For a task-loving, goal-oriented person like myself, this is the very definition of frustration.
Oh yes, while I’m at it, I’m also completely over being told I should of ‘learnt to know better by now’. Two words to that one. Bugger Off.
I did already learn long ago that this moderating, pacing and enforced rest doesn’t really work. I get why those living in a logical think it would, but it really doesn’t. I’ve learnt that truth the hard way – and on a regular basis, in fact. Living like a sloth can usually buy a day or two, or a week tops, but that’s really about it.
But anyway, here’s the thing. It’s not really the ‘learning’ to pace myself that I have an issue getting to grips with, it’s the acceptance that I have to do it at all. The acceptance that there will always be limitations of one sort or another. And with that comes the realisation: I’m never going to be able to climb a mountain, or walk for miles and miles along the beach, or hold down a full-time job, or even hit the town and dance till the sun comes up. OK, granted, the mountain climbing was probably never going to happen, but it’d sure be nice to do all the rest.
What a dismissal, depressing and utterly uninspiring prospect this acceptance malarkey can seem. Who in their right mind would ever want to do it?
So like I said before – seriously, what is the point?
sickandalwaystired.com 
Forever is the worst. The toughest pill to swallow. The most depressing part. Hopefully someday it will no longer be chronic.
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And boy, do we already have enough of those pills to swallow!
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This is the only one of your posts I’ve read so I’m not sure about all of what you’re coping with in your life, but I connect with your frustration.
Like you I’ve always been goal-oriented so the worst part of this has been having others tell me what my limits are. In my life I’ve been struggling with a chronic pain condition that showed up out of the blue almost 4 years ago and I’ve gone through – and still do some days – all of the feelings you’ve described. However, where ‘acceptance’ is concerned I’m learning that I do have to adjust my life to what I’m able to do on a given day because of my pain level, but that doesn’t mean giving up on everything.
In each situation, I weigh what I want to do or what others want be to do against what the cost to my body and recovery time will be afterward. It may not sound great, but that’s how I’ve been able to wrap my head around how to live this new life. This has also helped me regain some of the control I feel like I’ve lost from the previously active life I used to live.
I don’t know if this helps at all but you might want to try this approach for a while. That way when others tell you what you can’t do, your experience will inform your decisions.
I’m sending you positive energy to help you find the best ways for you to cope.
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Thanks for taking the time to comment. It’s always good to know that others can relate, although, of course, it’s sad that they can. I do spend a lot of time having to weigh up the ‘activity versus the aftermath’ and I know my limitations by now – it’s just frustrating having to live this way!
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I agree that it’s sad that others can relate, when it comes to pain or other chronic illnesses and having to alter our lives.
Based on my experiences, I wish I could tell you that the frustration goes away, but it may only fade depending on each situation you encounter. I hope that fading does start to cover larger swaths of your daily life so you can reclaim more joy 🙂
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I see a rheumatogolist Friday. Maybe to put the Lupus label on me. My body has been fighting my stress filled lifestyle to the brink. If you feel a flare how do you slow it down, stop it, what can get you through faster.
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In my experience, it’s too late to stop a flare by the time I feel it, but I can sometimes get over it faster if I literally put my entire life on hold and rest up for a few days. Of course, this isn’t exactly the easiest thing to do most of the time. Good luck with your appointment on Friday, I hope it goes as well as can be expected. Rachel x
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