A former boss of mine used to always say, "Lord, give me strength!", when she was having a difficult day. My family is attending a two day, outdoor concert this weekend. I always feel like such a kill joy to them, having to change plans because of my fatigue or pain. So, here's hoping for two days of less pain and fatigue (enough to allow my family to enjoy this two day event together). :-)
Those days are difficult . Do what you can. I find it hard when you have little ones and they want to go to amusement parks, and you can’t .
That’s it just smile through the pain and take motrin, it will be fine
Hoping you have a great time!
PS...those are the days when I start taking Extra Strenght Tylenol every 6 hours the day before. If I weren't allergic to it, I'd also take Aspirin alternating that. I also make it a point to get to bed extra early the night before and get up about 1/2 hour early to make a gigantic opt of really, really strong coffee and walk the kinks out. Getting up extra early also allows me to mentally prepare for the because while I love to be around family and friends, large gatherings are just not my thing and I can get easily overwhelmed.
Thank you for the tips and well wishes! <3
“Lord, give you strong sunscreen!” should be the catch-phrase The sound of two days outdoors made me cringe. Sun is one of the surest ways to cause a flare! It doesn’t just irritate your skin, it actually causes flares that go systemic for SLE patients, even if no rash appears at all it can be triggering other damage (and symptoms!) Is there anywhere for you to get indoors during the peak hours of sun (10-3)? Shade is better than full sun, but not very much protection at all actually. It looks “dark” in comparison to sun, but it’s actually way brighter under there than indoors. Light still reflects from everywhere. Can you bring a shade tent (so there are sides) and set up camp in back?
Regardless of how you feel beforehand, day 1 exposure (as well as over-exertion) could have serious consequences for day 2, and the two of them together could leave you in terrible shape. It’s the kind of thing I wouldn’t even attempt in the first place, there wouldn’t be any plans to cancel on because I simply would have said from the beginning that I hope everyone has fun and it’s not something I can join for due to the risks for me, but we can do something else together (indoors or evenings) another time.
As far as some of the earlier comments, I respectfully (but strongly) disagree… It’s my philosophy that when your body needs that much extra medicating, it’s telling you to stop and take better care. Of course we maintain our meds and sometimes have to increase the as-needed ones for daily life that includes a lot of pushing beyond our natural limits (since the natural limits are pretty tight!), but my first-line treatment for fatigue and pain is rest and cooking a nourishing and delicious meal if I have the strength to even do that. If I have just pain and reasonably manageable fatigue, I take one voltaren (similar but more potent NSAID than naproxen or ibuprofen, that lasts pretty much a whole day) and only do what that will allow me, then back off. Some coping with pain may also be necessary for essential life activities, but if there are optional activities I listen to how I feel and modify them accordingly.
I’m sure this sounds like I hide out and don’t do anything enjoyable. Actually it’s totally the opposite. By resting when I need to rest, I am greatly rewarded with times I don’t need to. Instead of having constant pain and low functioning, I have some days that range from disappointing to miserable, but a lot where I don’t feel like I have an illness at all (aside from the fact that I have to take precautions most others wouldn’t, like preparing for war with sun!) I’m not necessarily up to my pre-lupus level of function, but am actually well above many “healthy” people’s level because of where I started out (I’m 26 and was always an athlete), which means I can really “keep up” on those good days (like doing a very challenging martial arts class.) When I’m in a bad period of lupus activity, there are still good days and bad, just the ratio flips. I can say for sure, for me, that taking symptoms seriously when they are heavy is what allows me to have the maximum and best good days, which are all the more essential to me when they’re few and far between. I am in a state right now that I have mostly good days, and bad days can often be linked to a specific way I overdid it or slacked off about avoiding a trigger, and I think a big part of the success now is how deliberate I was about “getting better” when it was bad and we were finding out the right meds to control it.
But every case is different… Mine is new, and has the pattern of on and (mostly) off like I described above. Some people have a steadier sub-par, especially after lupus has been around for a while! But I really believe sitting games out, so to speak, makes it more likely you can play your best other times, and have a winning season If you’re in shape to play, go for it, but be really diligent about sun-protection!
I know I’m a little late to the party post wise, so I’m hoping you survived healthily. However, for future reference, I recall reading a post a while back about sections at outdoor events that are ADA friendly, like for wheelchairs etc. often shaded and sometimes cooler if need be. I don’t know if this was offered where you were, but may be a good thing to look for in the future; a place at the venue to escape the sun during peak hours. Just a thought. But either way I hope you had a nice time with your family.
Managed to find some shade and got just a little bit of sun exposure. I know it's too early to tell if I'll avoid a full flare, but not feeling too bad. I took part of the day off today, before going in to work. The only things I've noticed so far are that my feet are swelling and itching and I'm fatigued (but that's par for the course). Thank you so much for all the tips and the support!