Been suffering symptoms for a year but only just diagnosed with lupus.
Im struggling to cope when I have a flare :( I'm on my own with a 2 year old and its hard. Im even struggling getting up my stsirs and im only on the first floor in a flat. Its just so frustrating and everyone thinks im exadurating but im not :( I suppose I'll get ysed to the flares and learn how to help myself but just noe im not doing well..
Ohh my goodness. Im sorry your hurting so bad!! I have lupus and also have lil ones being a single parent is hard!! At my worst flare I literally got stuck on my stomach and couldn’t turn over the pain was unbareable! I had too let my ex husband keep my kids for a few weeks because I couldn’t pick my son up or do anything for them!!! That hurt bad! I know prednisone is sooo bad for us but I swear after I went too the ER an they gave it too me…the next day I could walk, put my own shoes on and didn’t need help too get in my car…I was amazed! Not sure what meds your on but ill pray that u feel a lil better soon!!!
I hope you have family or friends you can reach out to for help. This site is great place to start, we are all in this together. I'm sorry for your suffering and frustration, hang in there it gets easier to cope as you learn more about the lupus and how it affects you. Don't be afraid to ask for help and support being alone with a small child and having lupus can't be easy. take care of yourself.
Dear Struggling,
I know your symptoms and pain are REAL. Unfortunately this miserable disease is such that most people do not understand it. Hearing from others "you look good"...which I do not with my chubby moon face from the prednisone, only makes me realize the general population is clueless about what Lupus is all about. I work in healthcare as a nurse and my own peers do not "get it"...that I have REAL pain and working is a struggle for me.
I cannot imagine having a 2 yr old to care for...Your best bet is to create an activity box with things for your little one to keep busy with while you lie on sofa and monitor he/she. Also finding whatever help you can while you are flaring.
I am still new to this disease, < yr diagnosed. I can have horrible days, then days when I am Ok. The unpredictability of it all is what bugs me. I don't like being limited in what I can and cannot do. So coping with this takes time. And like I mentioned, no on "gets it"...esp if " you look good". Ugh!!
The best I can offer is, "hang in there"...keep your spirits up, which I know is very challenging at times.
Prayers coming your way!!
MrsDruP
I struggled with my symptoms for four years and was just diagnosed one month ago. You did the right thing by coming here and voicing your pain and struggling. We are here for you, we will always understand…we know your pain is exactly as bad as you feel it is. You are NOT exaggerating. I can’t imagine having a little baby by myself…I’m only 25. Do you have some close friends? A church you can go to? People there will probably be more than happy to help you on days when you are flaring so bad you can’t do certain daily functions. And may I ask what medications you are on? Having a doctor that you can trust and have a relationship with can be extremely beneficial. I see a therapist right now as well and that is helping me SO much…my emotional pain tends to worsen my physical pain. Just keep in mind there are things you can do by reaching out that takes some of the burden off of you doing everything by yourself. I’m praying for you and I hope you feel welcome and understood here. Sending love your way. -Em.
I’m in pain most of the time and my rheumatologist thinks that I might also have rheumatoid arthritis. I am thankful that this didn’t hit me until I was in my 40 's. I always got sick in the sun and some bouts with fatigue but that was all. I can not imagine trying to raise a kid with all these problems. My heart goes out to you and all the 20 year old fighting this disease.
Thank you all so much for your replys! It does give me a boost. I have fanily support but I feel even they dont understand how bad it is when I flare. I try to educate them by giving them leaflets. I know ill learn to cope better. Its jyst getting used tothe fact I have a "disease" and this pain/fatigue will be with me forever.
Thank you so much for you replys and advice!! I will take in all into account!
Hhope you are all well x
Kc93
I can understand where you are coming from was a single mom for 12 years and thank god didn’t have LUPUS then. I was just recently diagnosed in March and was so sick could hardly move my joints were so swollen my hands especially and knees had blisters in my nose mouth and the palm of my hands couldn’t touch anything even hold a spoon to feed myself. My eyes were swollen bcuz have Sjörgens too and face was swollen. Was in so much pain I honestly know now that God helped me thru it because otherwise I don’t know where I would be right now. I couldn’t hold my then 20 month old lil boy and that was the hardest part. I saw my rhumy and he gave me for injections one in each shoulder and knee my right knee was so swollen fluid started coming out when he tried to give me the injection had to take 4 syringes huge ones of fluid out first to give me the injection. When I look back if anyone had ever asked if I ever thought if anything like that happened to me would I be able to take it I would have said no. But now I know that I am strong enough to deal with that and whatever this disease throws at me with the support of God and my family. I have been with my DH 9 years now and I have to say God blessed me with a great supportive strong man that helps me get thru this one step at a time. My family and inlaws are also very supportive and thank god for em every day. My doctors have been great the treatments are working very effectively and everything I read here has been of so much help. I hope that you will get the help that you need and support and never loose hope especially because your little one needs you. You will find your strength in him and God I am sure if you ever need to talk I am here for you don’t hesitate. Wish you the best of luck and will pray for you and all of us who are going thru this god bless