Try to break things down into what is manageable for you.
In June of 2013 I had my first major flare. I had some minor health issues here and there prior to that, but I was very healthy and strong overall, and extremely athletic. One evening during dinner, I started having severe stabbing pains in my chest, so my boyfriend rushed me to the ER. After several hours the doctors couldn't find anything wrong with me so they sent me home after the pain started to ease up a bit. The following morning I noticed that my limbs felt strange and weak, and over the course of a few hours, I became unable to stand, walk , or even sit upright with my feet on the floor without excruciating pain in my legs. Even my arms had become extremely weak. I went to a different ER and I was told I had a virus and sent home.
When I finally saw my family doctor for my follow up a few weeks later he knew something was very wrong with me. He examined me, and ran some basic tests, then referred me to a neurologist. The neurologist ran several tests, including a blood screening for lupus, and the neurological conditions ended up being ruled out while the lupus screening came back as ANA-positive, He then referred me to a rheumatologist, who diagnosed me and started treating me right away. But that wasn't until November – five months after the onset of my symptoms.
Try to break things down into what is manageable for you.
My parents have been very supportive and they do what they can to help. They live nearby so they check on me a lot, even if it's just a phone call to ask how I'm feeling.
My boyfriend (of three years) and I have been living together since before I got sick, and he does everything he possibly can to make things easier for me and take care of me. He works hard to support us because he understands I can't work, and even when he's not at work he's going out of his way to make sure I am okay. He's carried me when I couldn't walk and been my main source of support through everything.
Our friends have been very supportive as well. Most of our friends have known me since before I got sick, so they saw how much I changed as a result and how much our lives has changed too. They try to be there for us in whatever way they can, whether it's coming by and helping us make dinner, or just making sure I'm feeling all right.
I stay on a sleep schedule of going to bed earlier than I used to so I get enough rest, because it's so hard for me to have any energy during the day. I also make sure I don't have any important plans early in the day so I have time to loosen up a bit – I always have pain in the mornings just after getting out of bed.
My boyfriend and I travel to large weekend-long events and conventions, and now we have to make extra accommodations to make sure I'll be comfortable during the trip because the traveling and the activity is generally very hard on me. I keep my cane on hand, as well as knee braces, in case my legs start to hurt. I can usually get around my own home with no problem (except during a flare), but being out and about is more than I can handle without a mobility device of some kind. I also generally avoid the sun as much as possible, and when I do have to spend time outside I cover up as much as I can and either wear a wide-brimmed hat or carry a parasol for a little extra protection.
I can't work anymore, but my boyfriend is very understanding of that and he works very hard to be able to support the both of us. I also can't participate in a lot of the athletic hobbies I used to enjoy so I've found some new hobbies that are less stressful and painful for me.
It's only been a little over a year since my first flare, so I'm still adjusting and coming to terms with my illness and the physical limitations that come with it.
Last month I did the Walk to End Lupus Now with my boyfriend and one of my best friends. It was only a mile, and we weren't sure I would even be able to make it the whole way, but I did. Even though I needed my cane on one side and my boyfriend on the other to help me along, I did it. It took longer than it would a healthy person, and I was exhausted and hurting for the rest of the day, but I'm really proud that I got that far.
Don't give up. It's hard to keep going sometimes, but just try your best to do what you can. You may not be able to do things the way you used to, and you may not be able to do the same things as everyone else, but you can find some way to make a lot of things possible for yourself, even if it's in a different way than you're used to. And take care of yourself. Take your medications, take your supplements and vitamins, keep up with your doctor's appointments, and try not to over-work yourself – try to break things down into what is manageable for you.
It's hard to keep going sometimes, but just try your best to do what you can.
I'm a competitive gamer. I play fighting games competitively and used to play dance games (like Dance Dance Revolution) competitively before I got sick. My boyfriend and I still travel to both dance game tournaments and fighting game tournaments. Now, at least as far as dance games are concerned, I'm a spectator, but I can cheer my friends on when they compete. I focus a lot more on fighting games and other video games now and I'm still participating in tournaments.