In need of some advice

Hi Everyone! I really need your honest advice on this on…
Here’s what’s up:
My birthday is on Thursday. My friends and I are going up to a cottage from Friday-Tuesday. But here’s my concerns… I don’t drive. My friend is taking me and I thought I could get a ride back on Sunday but that’s no possible anymore. There are going to be over 20 people there so I won’t get much sleep or naps. We will be outside a lot and although I have my 110 SPF and my 100% UV umbrella, I still can’t be in the sun too long. Drinking alcohol has not been my friend lately.
Any suggestions, advice, anything would be helpful!
All my friends are going and it’s my birthday weekend… I don’t want to miss out.
Thanks for any advice you can give!


Definitely enjoy your weekend. Celebration is important for us with auto immune issues. However, do what you need to do to continue taking good care yourself. Your friends want to certebrate with you and that’s wonderful, they will understand that you have to do thing a little different than those not dealing with a chronic condition. explain when needed and have a great time.

How old are you? Can’t you have fun without drinking?

I understand your concern. I would have a hard time if I needed to rest/nap and couldn’t. I’m sure your friends would understand if you ask them for sleeping accommodations that would fit your need. Doesn’t hurt to ask. Have fun and Happy Birthday!!

If I am reading you right, the weekend is not specifically for your birthday (BTW Happy Birthday!), but a gathering of friends on a long weekend trip together in close quarters of a cottage. Does the cottage provide a cot that you could move to a quiet place to nap? Of course you need to stay in the shade and drink plenty of water. I also take it that you don't need to drink to have fun, but you are thinking that everyone may want you to join in their drinking. You could just say no thanks, or put some ice in the water or add some juice and no one needs to know you are not joining them in enbibing...;) Make sure you take your meds and any emergency supplies needed. Let your close friends know your needs as to the sun and resting periods. Don't feel you need to explain to everyone. Your close friends probably already know your situation and concerns. They want you to come and you have a ride so go have fun... you are blessed with good friends, just remind them what could go wrong with your health, and in case of an emergency make sure you know where the nearest hospital is located.

Well first of all michelle why do you have to leave on sunday? Honestly i would go have fun be care free your b-day is once a year

Sounds like you are thinking Too much! Let your friends, which they prob already do, that you need rest perids… Pace yourself n you’ ll be fine. We all need some R n R w/ friends. Have fun n HAPPY BIRTHDAY!!

Hi Michelle! This is a tricky one, I'm going to guess you are in your early 20s like me? From personal experience its a catch 22. Ideally it's probably not the best idea to go, you already know rest is going to be impossible and there will be lots of sun (not to mention drinking) .... probably the worst combination for anyone with lupus. But on the flipside you are young, it's your birthday and you dont want to miss out, which i totally understand. I was diagnosed with lupus at 17, right before heading to college. During my first few months away from home I got mini flares (lasted probably a little over a week) after staying out late and having fun with friends. But after it happened the first few times, I started to get a little paranoid that I couldnt have fun and stay out late. Little by little over the years I started really limiting myself and holding back, I think I would even get myself sick from worrying about it which resulted in me not going afterall. I remember this one time my friends and I planned to go to a theme park the following day. I agreed to go. During that time I had been having sleep problems bc of the medication I was on and I would get tired really easy. I knew that I hadnt been sleeping well and that a trip to a theme park would be exhausting,so that entire night I kept worrying that i wouldnt be able to fall asleep and lo and behold it came true and i ended up not going.There are times I regret holding back and I think I should have just gone for it, and acted "my age". I'm not saying you should go for the weekend, there could be serious health repercussions and you should make the decision you are most comfortable with. I think living with lupus involves a lot of balances and self-control. It's not easy being young with lupus and knowing when to hold back. It's important to know your limits but you also don't want to live your life with regret. Best of luck! and happy birthday!

Just be a lady of leisure while you are there, friends will understand…in other words rest as much as possible and stay out of the sun. You are young so more power to you! I could never do it.

I went with friends to the river about 5 weeks ago for 3 days. I only drank one of the 3 days and only had a few drinks. I came home with psenomina that I still am not over, a lupus flare, bladder and kidney infection. I’m on my 4th round of antibiotics and feel like I won’t get better. If I could do it again I wouldn’t go. 3 days was not worth the last 5 weeks of being ill. With that being said if u can go with minimum outside exposure, lots of sleep and no drinking then go have fun. Not sure how ur body is but over the last 2 years I just can’t do all the fun things I use to be able to do. I am an outdoors person so it is very hard but I am trying to find indoor things to do now.