Enjoy the Good Days With Lupus (Without Overdoing It)
Although they may be few and far between, good days with lupus do happen! I’ll be honest — I have actually felt guilty when I have a good day. Sounds silly, I know.
However, I’m homebound, on disability, and unable to work because lupus is so unpredictable and it has caused numerous complications for me. When I have a good day and feel almost normal, it seems I should be doing something productive — right?
Well, it took me awhile to celebrate the good lupus days without feeling guilty. When I was originally placed on disability, I felt self-conscious and I worried about what people were thinking.
I would often wonder if they were secretly judging me because I didn’t “look sick.” I haven’t achieved remission, but my doctor has told me that even if I do — and even if it lasts awhile — my disability status will remain as it is because of the unpredictable nature of the illness, not to mention my near constant immunosuppressed state.
Lupus can strike at any time without much warning. The process of applying for disability is long and tedious. Once it’s been approved, it would be silly to let it go when there is a good chance the need will arise again…and again…and again.
So, I have accepted it and know that even when I’m feeling okay, I shouldn’t be trying to live the life I used to with all the hustle and bustle that came with it.
Sure, it can be fun and a great relief to pretend I’m not sick — even if it’s just for one day. However, I have to be careful about not overdoing it.
Although I can tolerate more, the day could potentially end with a nasty flare on the horizon if I don’t remain diligent and aware of my limitations. Ultimately, good days grant opportunities to do some of the things I enjoy doing that bad days simply won’t allow!
So how do we embrace the good days without overdoing it?
This can be tough. Like many, I have lofty dreams of returning to the travels I used to enjoy. I’d love to take a real vacation — go on a cruise, or spend a day at Disneyland with my family.
But realistically, I know these are things I simply can’t do, even on a good day. If I get hung up thinking about all the things I wish I could do, the good day could pass right on by with feelings of depression, anger and inadequacy.
Because good days are just as unpredictable as the illness itself, it would be a shame to let one go to waste without some kind of enjoyment, but it’s important to be aware of your limitations. For me, a good day means fewer aches and pains, less nausea and fatigue, and a relatively upbeat mood.
Breathing will always remain a challenge for me, so whatever I chose to do my oxygen tank must be accounted for.
Stay On Track
You wake up feeling good for the first time in a while — that’s great! However, it doesn’t mean it’s time to slack off. I can recall many times in the past when I would stop taking an antibiotic after being sick because I felt okay.
Not a good choice! Regardless of how good you may feel, it’s important to continue taking your medication as prescribed.
I used to worry about the overuse of medication or taking medication when it really wasn’t needed, but I’ve learned the hard way that there is a reason doctors prescribe medication the way they do. If you stop taking it, you are putting yourself at risk.
Lupus medications are designed to keep things in check. If you feel good, then they are working! Skipping a few doses here and there could spark a flare or set you back a few steps.