The good news is that I have been feeling really good lately, and for a good amoutn of time (4-5 months). What is funny though is that have gotten used to feeling bad and living in flares. I actually find myself "waiting for the other shoe to drop" so to speak and I am waiting for the unknown, or when the next flare will come. I wish I could just live in the moment and enjoy these times where I am feeling good. At what point does feeling good become normal and I can just relax with it a bit?
Does anyone else feel this way? When you are feeling good for a length of time, is it hard to believe?
I am sorry your mom isn't open to conversation and that she isnt as supportive as you would like. It is very hard to make people understand what we go through on a daily basis when living with lupus.
I agree with Lisa, that maybe educating her on lupus will help her understand that it is real. The pamphlets are a good idea and even the book.
I have asked my parents to come to doctors appointments with me so that they "hear it from the doctor directly" Sometimes it is hard to hear something from your own child. But when an authority or professional says something you kind of can't deny it. Just ask for a ride, and then have them in the room with you if you are comfortable.
Lastly, sometimes you just can't make people understand. But what you can do is take care of yourself. Find support groups, turn to friends for understanding, find joy in your child, and come to these message boards for understanding from people like us who understand.
I just finished watching "Lupus Care," the most recent WebMD Community TV video about lupus from the caregiver's viewpoint. I watched as my mom cried. I listened as a wife shared what it is like from a spouse's perspective, and as a mother expressed fears about her daughter's future with lupus. It felt like a "lupus patient intervention." I felt like I got to see the other side of lupus. I saw what it was like to love and care for someone with lupus.
I know that sometimes we don't always want to face it, but if you have lupus, you're not the only person affected by it. Lupus can also affect everyone in your family and circle of friends. I also realize that I may sometimes take the ripple effect of lupus on others for granted.
My mother and father have helped me many times in my life, and though I always say "thank you" for the things they do for me, I never fully realized the worrying, stress, and fear my lupus diagnosis causes them. Being a part of this video truly showed me the other side of things.
I don't think there are ways to stop our loved ones from worrying -- it is a natural reaction for someone who loves and cares for you. But are there ways for that we can help lessen the worry for others? Yes!
• Be honest. I know that for most of us who have lupus, our instinct is to answer everyone who asks, "How are you feeling?" with the answer, "Fine". But being honest with our caregivers gives them a much better picture of how we truly are feeling. This helps them to not be so shocked if a bad lupus flare happens. It also lets them see and understand distinct differences between good and bad days.
• Keep people in your life "in the loop." Many times, people who have lupus have the instinct to shut the world out by not answering phone calls, emails, or even the front door. Most of the caregivers I spoke with want to help. They want to know what is going on with you. When you withdraw during times of difficulty, it can cause all kinds of "worst case scenario" fears for them. I always thought I was protecting them from hearing my negative lupus news, but what they are imagining and worrying about is by far worse than anything that is actually going on with me.
• Be grateful. So many people in the world do not have caregivers. We all need to remember that these people love us. Try to be patient with your mother, friend, spouse, or partner when they ask you for the hundredth time if you have taken your medicine. Try to be understanding when they ask you a billion questions so they can gain a better understanding of your lupus. Have patience. Say, "thank you." And be grateful.
Boy, did I learn a lot from that experience taping that video! It has certainly changed how I appreciate and interact with the caregivers in my life!
Lupylisa44 and all the others gave great advice. It is very hard to stay positive despite having an illness that can really bring you down sometimes. Everyone else gave such great advice... I would just add that something that has really helped me has been doing a gratitude journal. I write three things every day that I am grateful for. Some days when I am feeling good and I am not in a lupus flare it is easy! Other days it is harder... but now it has almost become a game to me.. and always cheers me up a bit to try and refocus. I write in the jurnal too before bed so that aybe I can sleep with some better thoughts in my head. So sometimes I can write I am grateful I walked around the park! But yes, other days I am just grateful for a nice hot shower, or a song on the radio, or even just being able to get on the computer and "talk" to some friends.
I remember when I was first diagnosed, I was angry, but yes- I was kind of relieved because finally I had a name for what was going on in my body! I was actually happy that now I felt like I wasn't crazy! I also was happy to finally have an answer for when everyone was asking me what was going on. Even if people didn't know what lupus was, at least it was an answer! I hated having to say I don't know. I think once you have an answer there is a sense of relief but also for me having a diagnosis gave my illness, and my feelings a sense of validity.
HI Tori (and some of the other fellow moms out there)
I think being a mom is the hardest job that anyone can have in the whole world! But add lupus to that, and we all know it can be difficult. Part of "taking care of my medical care" was prepping for those mommy days when I didn't feel good and being ready for them instead of fearing them or letting them take me down both emotionally and physically.
1. Great tips Jabccox! First rule of being a lupus mom is to stop trying to be super mommy! take help when offered and ask for help when needed.
2. Another thing I do is I try to save quiet/ low energy activities for those days when I am tired. So I save movies, books, puzzles, coloring etc for the days when I have less energy and try to do the higher energy activities or outside activities for when I am feeling better. This way a movie cuddling with mommy is special because she doesnt get it all the time!
3. I have learned that the dollar store is my friend! I lok for easy small craft projects that are cheap and I leave them in my closet. Since they are usually self contained, when my lupus fog is there I dont have to worry about looking for crayons or glue etc. or even thinking up good ideas!
I hope all the lupus moms out there can chime in with their tips and ideas... since I am a new mom too- I would love to hear them. My daughter is 4 and boy is she a bundle of energy!
In the posts in this thread we hear from a wife of a lupus patient, a lupus patient that tells nobody and a person who tells everyone! wow what a group we are! That is what I think is so great about these message boards is that we can all learn from each other, even if we have different approaches on how we handle our lupus and our families.
We all may do things different and have a different style to our personalities and our own unique family situations, but we can all learn little tips and help each other by supporting each other along the way.
There is no right or wrong way to mix your lupus your friends and your family. You have to do what works for your life! So let's support each other along this crazy rollercoaster of life called lupus.
Today happens to be a fatigue kinda day for me. I am so tired. I hate that word tired... it doesn't seem to quite explain how I feel. But since I am speaking to you girls "in the lupus club" here at webmd I feel like I can talk open and honestly. So do you know what I am doing today? I am giving myself the day off. I think I will make it a national "off" holiday. No rules. No to do lists. No need to make excuses for your lupus. You need rest, it's simple- rest. You need to take a nap, well put on those jammies and take a nap. No guilt.
One of the most important ways to take care of yourself no matter what the health issues you have, is to listen to your body without adding guilt to the mix.
So listen to your body, if you need rest, rest. Take it easy on yourself cut that to do list down to just what is essential. But most important... NO guilt and NO excuses!