How do you juggle life events and Lupus? i had a Busy wonderful family weekend. Girls were home frpm school, for 1 of my god daughter’s wedding showers, she surprised me by telling me I’d be God- Grandma, very excited. Helped my youngest get ready for her last HS Homecoming dance then we were off to do pics. Grocery shopping and more errands. Today lunch and Wicked with my sis and niece. Said bye to girls and collapsed. I have to work tomorrow because i am the only one in the office. Everything hurts. Next week they come back for our traditional trip to the pumpkin patch. then the next 2 weekends we have My oldest niece’s baby shower, my God-daughters wedding. Spending time with people I never get to see. This time of year i would normally schedule my self non stop and be picking my vacation days for the up coming holidays. Now instead of concentrating on how exciting everything is, I’m looking at the calendar to schedule recoup days because I now know I will need them. I realize I am having my very own pity party, because I just can’t figure out how I am going to deal with this stupid disease and enjoy everything. When I am feeling better on Tuesday, I won’t give the pain another thought and be my bubbly self, kinda glad no one will be at the office to see my sad self, I prefer people don’t see her.
Hi McMommy
I was tired just reading all you did this weekend : ) You are taking care of yourself, by scheduling recoup days - Good for you. Your other choice is to completely exhaust yourself and risk a flare. You are allowed to have a little pity party, then pick yourself up and be thankful for all the things you can do. You can get up and go to work, you can have a wonderful weekend with your family.
Hugs
I'm sorry that you're experiencing this, but also glad to know it's not just me. Over the past year, I've had to stop doing many of the fun things I enjoy on the weekend and just spend that time resting. If I don't, then I can't make it to work during the week. I am still mad about it. It's not fair that I have to give up the fun stuff. The reason I can make myself go to work, is because it pays for the fun stuff and now I don't even feel like doing it, or know that if I do I will suffer the consequences. I end up having a pity party almost every weekend because I get so upset that I can no longer enjoy my life the way I once did. Obviously, I haven't learned to deal well with this yet. I still get upset and mad and cry and complain almost every weekend. There's always some event I'm missing because I just don't feel like I can go to it and do all the things that I HAVE to do during the week. I also know this wasn't helpful to you at all, but it did make me feel better to get it out! Thanks!
Ladies I totally understand how you feel. When I was first diagnosed,in 2010, I did not know how to juggle the two. Now I am not able to work and still have to plan my days. I have a two year old grandson who I can’t babysit but one night a week for 4 hours. I have learned to take care of myself and know my limitations. I have my moments when I feel sad, but I realize I had to make a choice before I had no choice. Take care of yourselves and thank God that you still can do somethings like work.
Hi Julie, you did actually help as did the other ladies. You let me know I am not alone. I am glad it made you feel better to get it out. Every so often it's good to have a pity party and this seems to be the best place, other people just don't understand.
julielutz74 said:
I'm sorry that you're experiencing this, but also glad to know it's not just me. Over the past year, I've had to stop doing many of the fun things I enjoy on the weekend and just spend that time resting. If I don't, then I can't make it to work during the week. I am still mad about it. It's not fair that I have to give up the fun stuff. The reason I can make myself go to work, is because it pays for the fun stuff and now I don't even feel like doing it, or know that if I do I will suffer the consequences. I end up having a pity party almost every weekend because I get so upset that I can no longer enjoy my life the way I once did. Obviously, I haven't learned to deal well with this yet. I still get upset and mad and cry and complain almost every weekend. There's always some event I'm missing because I just don't feel like I can go to it and do all the things that I HAVE to do during the week. I also know this wasn't helpful to you at all, but it did make me feel better to get it out! Thanks!
I think you are doing very well . I went out out dinner Friday night and felt like I was hit by a truck saturday. I am not able to work at this time. I am hoping to have more energy when I have grandchildren. We need to take it one day at a time.. this time of year is especially challenging.
I do realize I am doing very well considering the amount of stuff I did, but it's nothing compared to what I use to be able to do. I was up sick all night Saturday and stayed in bed as long as I could Sunday morning. I fell asleep on the couch after the girls left, slept for 3 hours and woke because of the pain. Yes, I am lucky I have a desk job now and can set my own hours. I am sure I could not do the job I had for the last 10 years in shipping and receiving and definitely not the 15 years of daycare. My 2 year home business is suffering because I don't have the energy to promote, sew to all hours of the night or do shows like I could even last year. I just keep hoping the Lupus will go away or be cured. Deep down, I know it won't but I have always been the optimist, and won't give up hope. I want to enjoy and watch all the babies that are due as I did their mothers when they were babies.
Smiles to you all!
I'm struggling with the same issue of overdoing fun things... Mine are different, since I'm 26 and it revolves around doing things with my friends or active things (dancing, capoeira) I do to make me feel great and that keep me in shape with higher energy levels when I can participate! However, over-doing it can be a big problem since I'm in school full-time doing post-bac work for a master's degree and working to support myself (single and broke.) I am thankful all the time that my health is good enough to do any of these things (last year I was only able to get out of the house occasionally from an otherwise homebound state... I had to plan a trip to the grocery store as a whole day's activity, rest all day to be ready for a night with friends, etc.) However, the more health I regain, the harder it is to deal with limitations!
Reminding myself of where I was before, or hearing about how others on our site bear an even greater burden, helps me find gratitude and resolve to live well within the limitations, rather than getting caught up in the natural longing for total release from it (of course there's nothing wrong with wishing we felt better! But the opportunity we have when we live with this disease is to actually confront the issue of happiness with what we have, something the people who take life and health for granted often never find, as they keep chasing after something they're sure is better.)
A major influence that helps support this mindset is a fantastic book called "How to Be Sick" by Toni Bernhardt, a chronic fatigue syndrome sufferer. She practices Buddhism, but writes in a way that the reader doesn't need to be a follower at all to benefit from the teachings she applies to herself (removing the layers of self-imposed suffering from the suffering that inherently comes with the territory, not just for us but for everyone!) Best of luck, and like others have said, congrats to you for knowing when you need recoup days. I'm taking one today even though I don't have paid leave, so I have to choose based on probability that avoiding the flare will lead to fewer lost days (or more productive days for tips) later on. One way you can think of your recoup days is that they will allow for more enjoyable busy weekends in the future! :)
wow- you did a LOT! I don't usually schedule 2 really busy fun days back to back, because it's too much. Fun is really really important. and time with people you love and enjoy is really important. More important than work. So my suggestion is twofold:
1) get help/ let your family help. Someone else could go to the grocery store and other errands, for example. If the people you love are old enough to have a wedding shower and be in high school, they are old enough to help out a bit.
2) spread out the fun, or do something more low-key at home the 2nd day, if you have 2 fun days in a row. Like crafting board games, playing cards, painting each other's nails, or something like that- not requiring a lot of energy.
If you keep trying to be wonder woman, you're gonna crash and end up being no help to anyone at all.
So... you're gonna have to learn to set limits and ask for help. This is hard for all of us to learn. I really hated asking for help. I didn't even like saying yes when people offered. But eventually I learned that most people LIKE to help, and WANT to help, and it makes them feel useful. It's a chance for them to show they love you, and for them to feel less powerless regarding your illness. They can make a difference. Everybody likes to make a difference. In most cases, accepting help blesses the giver even more than it blesses you, to allow them to help.
Unfortunately last weekend was unavoidable. My sis scheduled wicked and best friend scheduled the shower. Looks like one every week from here on out.
I hope that you can continue to enjoy all that you are as of now! As i got older i had to do less and less...i say go ahead and push as much as you can now!!
Just listen so you do not hurt your body. Enjoy it!! and congratulations too!
I have decided that sometimes I just have to do it even if I pay later. I have only been sick since April but have been in and out of the hospital and appointments every few weeks. I am unable to work or go to school so when I have a chance to get out of the house I push my self and go and enjoy myself while I can. Like last night a bunch of friends got to go bowling I wasnt able to bowl but I was able to sit watch and have some good laughs. Then I was asked over for a sleepover, i knew I would pay for it but I decided I still need to have a life and have some fun. So I went.... I sat on the couch or chair and watched them and participated in the games I could. I am paying for it now, but I am so glad I went I had so much fun and was definitely something I needed! I have decided that I have this disease but I doesn't have to have me. I had a friend that was so kind and helped me by carrying my stuff and help with my wheel chair so I could participate. That meant so much that they were willing to help me so I could still be out with them!
I am so glad you had fun. Take it easy today. Hope you feel better tomorrow.
Louters said:
I have decided that sometimes I just have to do it even if I pay later. I have only been sick since April but have been in and out of the hospital and appointments every few weeks. I am unable to work or go to school so when I have a chance to get out of the house I push my self and go and enjoy myself while I can. Like last night a bunch of friends got to go bowling I wasnt able to bowl but I was able to sit watch and have some good laughs. Then I was asked over for a sleepover, i knew I would pay for it but I decided I still need to have a life and have some fun. So I went… I sat on the couch or chair and watched them and participated in the games I could. I am paying for it now, but I am so glad I went I had so much fun and was definitely something I needed! I have decided that I have this disease but I doesn’t have to have me. I had a friend that was so kind and helped me by carrying my stuff and help with my wheel chair so I could participate. That meant so much that they were willing to help me so I could still be out with them!
Keep doing what you can do when you are able and don’t over do it! Sound good that you gave yourself a big push…Beverly L.
It’s so wonderful to hear you all having a great time! I totally agree it’s a combo between the short-term and the long game… And it works both ways:
- resting now/accepting limitations gracefully/knowing what’s too much will benefit us over the short term for flares and the long term for disease progression.
HOWEVER
- having some amount of enjoyment, within the limits we have and sometimes a little beyond them
:), makes a huge difference to our mental/emotional/spiritual well-being! (Which in turn reduces stress and reduces flares and disease toll…)
I pushed too hard yesterday, but knew I had some time for rest today. After a long day’s work that I didn’t make hardly enough from (most of my pay is in tips, got unlucky yesterday), I went out to dance Cuban salsa with my friends (think less ballroom, more booty-shakin’, more dynamic and fast and rich music with more intricate footwork and Cuban tricksters catching you by surprise… It keeps even the healthiest of folks on their toes and sweating buckets!) I always used to go and dance to slow songs or with friends who “know”, or at least watch the smiles, hear the music, and absorb the energy, except the really bad times where I was totally homebound. Now that I’m working and in school I’m exhausted by Friday night and stay in and collapse. I knew I would this time too if I went home, so I called a friend who lived on the way there from work, where I could stop to eat, chat and refresh before heading to the restaurant that clears us floor space to dance
I knew I was going beyond my limits before I even went, and I know I’m always so enlivened by the music and dancing that I don’t feel any pain or exhaustion till I get home and try to get through my bedtime snack-meds-toothbrush-toilet-pajamas-water glass on the night stand routine that seems such an uphill battle sometimes, as you all know! I’m a night owl/vampire, so the 3am bedtime was no problem… I can sleep past 10 any day. But this morning at 10:30 when I cracked my eyes, I had that familiar feeling I describe as great-grandma with a hangover, though I’m 26 and don’t drink! Thankfully it’s not so familiar anymore now that my treatment regimen has me pretty well controlled (Rituxan is incredible for me, and no side effects I can feel although potentially serious risks due to the potent immunosuppression. keeping my fingers crossed!)
One important element of the joy I feel dancing, especially full-throttle, is that I know there have been so many days that it’s been unattainable. AND, hearing the stories of those of you whose disease has progressed or just never got controlled as well as mine thankfully has been.
I really hold all of you in my heart while I’m on the dance floor releasing my pain yet never forgetting that I have lupus. That we all do, and we all live the fullest how we can. Some people really notice, and they’re the ones we can impact positively…
The few friends there I’ve told about my lupus, the understanding ones, get it right away: THAT’S why you have that infectious smile and powerful energy we all know and love! And wonder where it’s gone when you’re having an “off” day. One thing I love about Cuban culture and also Brazilian (I’m a capoeira chick too, but that is even more physically intense and only for my nearly full-function days!), is the sense of community energy and vibrancy, expressing joy together and really drumming, moving, singing, and experiencing. Cubans call it “la candela”, the candle that stays lit and is shared with the music and dance. When I stay home, I usually light myself a candle and remember I can be there another time, and that the community is keeping it burning bright for me till I make it back. It also reminds me to believe I WILL make it another day, just not this day. I’m not a religious person, this is probably the closest thing to a practice for me (a little meditation here and there as well.)
I hope my story here helps, and I’m so glad we can have a space where we all “get” each other in this balancing act. Outsiders can be so quick to preach and criticize, whether in the “you don’t look sick” bent, calling you dramatic or even a hypochondriac, using your few good days as “evidence” you’re just making excuses over working hard in life… Or, in the “be careful, you’re sick!” sense of sincere concern (btw, I prefer the over-worried concern any day of the week… So much easier to respond to, and it shows they really care rather than reject!) I cut people some slack knowing that they probably just aren’t prepared (just as none of us were) to really take in just how fickle it is! My rheumie calls it “predictably unpredictable” and LFA calls it the “cruel mystery”… I really hope their campaign goes far, but in the mean time I work on finding as much grace as I can to manage the insults piled onto my injuries, and turn to this group when I can’t take it anymore. Or when I have some good news to share Thank you.
Oh, and a few editorial notes… I’m romanticizing a bit as I get caught up in the story:
- I knew I had time to sleep in today, unlike the 4-5 days a week I have an early alarm to start my whole day off on the wrong foot, which I usually sleep through and start off on the wrong foot and a long time after the start gun!
- However, sleeping in and a day at home working on laundry, tidying up, etc. wasn’t even reasonable for how far I pushed it. I passed out for 4 hrs of semi-conscious strange-dream napping for the afternoon, which is a sign of my CNS symptoms flaring. NOT good, especially since I have midterms on Tues.
Thus, I failed to follow my own advice… Sort of. I compromised my short-term physical health and perhaps academic performance, yet I gained a huge boost for my morale that had been dragging. That boost applies to short AND long-term, so as long as this mini-flare I started doesn’t combine forces with the cold I’m already fighting (or rather, not fighting effectively due to having no B cells and being on steroids…) and my midterms and moving this month, to create a sustained flare! Which seems a little too likely for comfort. So I’ll be staying in a lot more over the next few weeks… Lighting candles to study by
Best,
Brynn
I feel your pain McMommy. I want to do EVERYTHING with my family...but even something as simple as sitting in a car for too long puts me in a lot of pain.
I just finally had to be honest with my family, and More importantly with myself when I need to cool it. When we do something I tell them I need to take a break, even if its' just a 15 minute one to put my feet up so the swelling will go down. I had to stop being so stubborn and allow people to help me. I still have a hard time with that, but I have noticed I am able to participate more if I am not blowing all of my energy on the mundane stuff.
My whole family has decided to go to disneyland this year for Christmas. Having done this a few years back, I know how hard it is with a semi healthy body and I am way worse off then I was in the past. So, I sat down with them and said Ok if we do this, this is what I need to make sure happens for myself. We have resting options, and fall back options if my body can't take it. We are splitting it into 2 days, instead of trying to fit it all in one. And even though I live in orange county, not far from disneyland, we will probably be staying at a condo right around there so if I need to go back and take a nap it's an easy option for me. It's a hassle and it sucks that i have to do it, but its either that or miss out on time with my family, and that is something I am just not willing to do. As for the million other things that go on this time of year, I now pick and choose how best to spend time with everyone but also make sure there is time for me.
It's all about trial and error and figuring out what works best for you. The most important thing to remember is that if you don't put your health on the top of the list, there is a possibility you will miss out on more than you want.
Pity Parties happen, I have them when things are overwhelming, but it kinda helps me to get it all out and pick up and carry on.
Hang in there Sister <3