I keep thinking about this "new normal" that everyone talks about. And the more the I think about it, the more ****resentful**** I get about this "new normal." Normal is being able to go to the grocery store and then have a cup of coffee somewhere and not need to collapse into bed for 2 hours afterwards. Normal is being able to vacuum without panting for half an hour after. Normal is not having to keep a goddamn tome for doctor's visits or staying in hospitals for weeks at a time.
This "new normal", to me, sounds a lot like code for "learning how to make do with less." Less energy, less concentration, less money, less social opportunity. It doesn't mean normal ANYTHING, it just means not doing a bunch of the **** you used to be able to do.
That just pisses me off. That's not normal. And it's sure as hell not a "new" thing I want to get used to. But I haven't got much choice, either.
Is there another way to put it than "a new normal"? Because the way it sounds now is just that things feel so bad now, that even the mildest of reprieves (not necessarily equaling GOOD, even) will feel "normal."
And that's not a satisfactory answer to me.
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quirkytizzy
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I have the same problem, especially when I am talking to my doctors. I find myself saying things like, "I feel worse than normal this week" - when what I really mean is, "I felt terrible last week - and this week is EVEN WORSE!"
In some ways it's a way of coping - if I allowed myself to feel just how disastrously things have gone this last year, I would be in permanent emotional meltdown.
But the downside is that I am colluding with a situation which allows "the system" to pretend that a consultation of 10 minutes every few months can be seen as an adequate way of dealing with a complex condition that really needs hours of thought and discussion to understand.
This is exactly what happened to me this week, in fact - I saw my GP on Monday. After 15 minutes, she clearly indicated that she had no more time, and I left. But she had only dealt with the "new" stuff. Underlying that are the long-standing problems that no-one seems to have time to sit and think through....but that's my "new normal", so we don't need to do anything about that....
Yes, sadly that's the case for me, too. In fact, my current GP has no idea how things really are for me on a day to day basis (or even the fluctuations within a single day), as appointments run strictly to time and we only ever 'fire fight'. My rheumy is very good but, again, strapped for time. As you say Lupus, and the secondaries that can come with it, is a complex condition requiring thought/discussion, etc - but our health system doesn't work like that for the most part. However, round these parts physios do still offer 30 min appointments - and, boy!, what a difference having time can make. Healthcare professional actually understands the issues; proper time to consider ways forward; patient goes out actually understanding what was said, to do, etc!
I had a visit from a private physio the other day, and she was very good - not least because she actually looked as concerned as a normal person should! She also contacted my GP to suggest a referral to neurology and endocrinology. Shame she can't take over my case management! Good to hear that you've found a good one, MrsMouseSJ!
Yes I hear you. I am not liking my 'new normal'. I am not ready for this. I am grieving the old me.
Although accepting may be easier mentally & less stressful. I should likely accept. But it feels like I am giving in & being more of a failure. I despise this. Then I feel guilt as I could be worse. I should be grateful I am not worse. Lots of emotions for sure. I guess this is my normal. But not new.
Never think of acceptance as giving in - there was a lady on the first forum I ever belonged to who fought tooth and nail that it was giving in. Maybe age has mellowed her - but now she "gets" it. All that energy you devote to the fight can be so much better used adapting what you do to fit with a new reality - does that feel more acceptable than a new normal?
"Acceptance in human psychology is a person's assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it or protest it. The concept is close in meaning to 'acquiescence', derived from the Latin 'acquiēscere' (to find rest in)."
I like this idea but fall far from a peaceful person. It's in my nature to be frantic, pessimistic, and overall just...well, think like an aging goth, but with decades of new gloomy music to listen to other than 80's New Wave. the article says "There are two ways out of a problem: accept what’s happening, see the positive, and choose a peaceful state of mind; or fight against it, be miserable, and struggle against the universe." I struggle so hard against the universe.
I'm not a positive person. Not by nature. I rather loathe positive thinking. But....do you need to think positive to be peaceful? Because while I can't STAND the idea of being a positive person, this concept of "peace" is starting to sound really nice.
I don't think you do necessarily - I detest the "think positively" mantra too. It depends what it is - I'm a fairly pessimistic person (though I'd rather think of it as being realistic). I'm not frantic though - I suspect no longer living in the UK helps!
To see the positive when we are chronically ill often seems difficult. But it is easier perhaps if you look at it from the view of what CAN I do rather than what CAN'T I do. Bit like being on a diet - it's awful when you look at it as I can't eat this that or the next thing but when you find the delicious things you can eat without feeling guilty a whole new world opens up.
I don't object to the term new normal but does it really matter? You can call it whatever you like.
Omg this is brilliant! I am resharing that article everywhere and any chance I get! I have been dragging along the gorilla and then alternately trying to fight it (which makes it surly when it goes into public.) This is fucking brilliant!
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Started new job eeeek!
Lupus is so underestimated by so many people.
Letter to my partner about Lupus
New year ! 
