Hi. I am 27 and I have lupus and I struggle daily. I struggle with my diagnosis, my pain, and I really struggle with being limited/having to slow down. I wish I didn't wake up exhausted most days. I wish I could exercise like I used to. I wish my energy didn't magically disappear. 😔 I'm looking for support or some motivation.
Hi Valerie, so sorry to hear that you have such a life changing diagnosis at such a young age. Although none of us have a magic wand to make your illness disappear we can all empathise with your daily struggle. I wish you many days that are pain free and happy and that you soon find ways to cope. X
Hey PeanutValerie, welcome to our support club (as I like to think of it). I'm sorry to hear what you're struggling with at your age. My husband has a cousin with lupus, and we don't get to see her much. But I know she felt just like you, trying to balance her job, raising her children and never knowing when the flares would come or go, or how bad they'd be. She was completely honest with her boss so she kept her job as long as possible.
I'm 53 and have fibromyalgia, DDD, osteoarthritis, and a long list of others issues. Like Deena26 & Aliya said, we can all empathize. We may not all have lupus but we all have life-altering illnesses. Read though the other posts and you'll find different suggestions on how we all try to cope. We can laugh, cry, and even pray for each other. No one is shunned or shamed here. I pray you have a good day today. 🌸
You have no idea how grateful I am for you already. I don't have anyone to relate to and spent years thinking I was crazy, lazy or a cry baby. I appreciate your support and look forward to being part of this community.
Hi Peanut I am so sorry that you have to go thru this at your age. This is a wonderful group of people to be in with. I myself just recently found them and they have Ben great no judges anyone everyone is very supportive. I myself do not have Lupus but belive me YOU ARE NOT LAZY !!!!!! We all can emphasize with what you are going thru, your not alone any more, you have a new family in all of us.
Welcome to our community family, peanutvalerie... I am 50 and have DDD, DJD, TMJ, Scoliosis, Thoracic Spondalytic Myelopathy, Severe Lordosis, Spinal Spondylosis, being tested for Lupus and carry a level of 8.5 pain on a daily basis on pain meds. This is a great place to come and get support, vent, laugh, help others, get advice, etc... Hope that we can be of help when you need it.
Hi and welcome Peanut and Renn. Think many of us can empathize with your feelings. I am on year 6 of chronic pain, fibro etc and it really is a struggle to accept oneself with severe limitations. Some days I do it better than other days. I think we have to accept that this is our new reality and our new 'normal' and go from there. I think it is counterproductive to ourselves to fight it so much. Not to say we should settle and not try to overcome pain and our limitations but to think of what CAN we do instead of what we CANNOT do. I am trying to tell myself 'baby steps' in the exercise department. Restarted physical therapy 2 weeks ago and my goal is to 'redone', lol and my 'workout' is 7-12 min on a bike or until I start to get sciatica and some exercises with one pound weights. Feels pretty pathetic but I figure it's better that nothing. I am in my fifties, although older than you youn'uns I still get pretty depressed when I think that this is how my future is going to be. Arrgghhhh! Very frustrating for sure but we have to try to put things in perspective and think of all the people that have it worse than us and try to do the best with what we have.... AND be kind to yourselves. Pace yourself. Don't overdo it. Don't try to multitask. Do only the importation things. Make your life easier. Keep things simple. Well, that's what I try to tell myself and those are my words of wisdom for today. Lol. Gentle hugs to all!!!
Hi PeanutValerie I qam new here too. I hope you can find your balance. I have fibro diagnosed last year and have been off work since July. I am dreading returning to work although it will be phase back return and I will have office only duties to start with I seriesly do not think I will be able to do more than that (if that) so am concerned what my work will say when I tell them I don't believe I can do my actual lab based job. Will be talking to my work nurse in April so going to have to tell her that...scary!
But the advise everybody has given is sound advise. Its going to be tough and I have days were acceptance is there and days like yesterday when my fella went out on the town all day and I was left alone sobbing my heart out because I want to do that again, I am alcohol free at the most due to recovering from having my gallbladder out they believe my problems there are due to autoimmune pancreatitis so something else to watch out for. But some days I do mourn my past life so many thing I wish I could still do. It is such a difficult transition. I am trying to find things that I can do still without too much pain. I am about to learn short hand so I may be able to write more before I can't grip the pen anymore...on that note gtg my wrist is starting to kill from typing!!!
I hope you can find a way to come to terms with your condition and after the posts I have read everybody seems so great and supportive!