I will be mostly a wall flower, at least until I am able to open up. I have to hide my chronic illnesses from those around me so it is force of habit. No one really understands what I go through, and they are shocked I have to say no to so much. It is hard when you have always been the dependable one, everyone's go to person. The only person with a clue is my husband. I have pushed myself hard, given to the point of exhaustion, and it has cost me dearly.
I wish to make friends with others who will understand, and really could use sharing how to live well despite all the road blocks with my health. Though not a religious person, I do have strong spiritual beliefs and faith that has kept me going. I feel if not for that, there are so many close calls that would have turned out differently.
Yes I know it's past midnight here and I could be sleeping, but I spent most of the day doing that. Keeps me out of the sun at least!
The dishes are piled a mile high, and laundry over flowing too. It is quiet, so maybe a little can get accomplished. A bath might be a good idea? I remember when I cleaned the whole house top to bottom in a day without blinking.
It's pouring rain now, very dark and dreary. I look forward to getting to know everyone.
I understand completely. Your story sounds like mine alot. But this disease has humbled like nothing else. It has made me say no and take care of me a lot more. It has also made me ask for help from my friends. It has helped me to identify my friends too. I don’t speak up often. But I do read the posts here. They are very helpful. So is the support.
I'm glad you're reaching out : ) I have trouble staying asleep at night, I might sleep 2 or 3 hours and then I wake up. Most times I manage to return to sleep, but not for long again. I hope you make some friends here and share with them : )
Your story is my story. The difference is that my sisters have autoimmune diseases also although so far no diagnosis of lupus. They are my rock as I am theirs. I am also lucky to have my friends still with me thru thick and thin. I thank God for them everyday. My saying no was gradual so it wasn't quite as shocking maybe as what you did. I overdid by not saying no and my family and friends realized it when I would show up and it showed that I shouldn't be doing what I was. No amount of make-up covered up what I was trying to hide.
So, you are not alone and there are so many wonderful people here. You will be able to open up here and be understood totally. Welcome and gentle hugs! Reet
Glad you are here. I have also found this community to be of helpful. To hear people feel the same way I do. I have had autoimmune diseases all my life. My parents and family do not support or understand what I go thru. I am lucky to have a job I can usually still get to with my flares. Although this last one made me really think that I couldn’t get there. I schedule extra days off often and that seems to help too.
I have been constantly comparing myself to what I used to be and it becomes depressing. The hardest part is staying positive.
You have so come to the right place. I am fairly new to this group and I feel so blessed that I found all these lovely people.
Lupus quickly makes changes in every aspect of your life. You will find some people will be able to adjust and others will not. I have my husband, one wonderful brother and sister who totally support me. I have let my relationship with my eldest sister go because she could never quite ever stop thinking about herself and resented that I could no longer put her before my own health restrictions. What I am saying is that it took a long time for me to realize that lupus was the one in charge now and I had to listen. This idea went against everything I was in any of my relationships.
Being part of this group helps so much with just having peace of mind. We might not all have the exact same symptoms but we can relate in so, so many ways. It is awful having this disease but it has made me a much stronger individual and a much more compassionate listener. Sometimes all we need is to be heard because there are not going to be answers all the time.
hi osoperplexed,i don:t speak often either but like lyn Tennessee and many others i do read the post because no matter what doctor we may have or who is in our life or not in our life lupus could diffently make you feel alone because this is one of those screwed up illnesses that if you do not have it no one understands how could they we can not even exlpain it let alone understand it and like tanya said i myself can not help but to think the way i use to be it is sooo overwhelming exspecially its almost summer where i live and i remeber when i use to just go out side with a sleeveless shirt and a pair of shorts how can you not get so dam deppressed i feeel i have no life the sun was what cheered me up and now i am so parnoid to go out side it takes so long and so rediculous how we have to cover up and be afraid, it is soo hot and humid on top of wearing extra clothing and i have noticed i will still flare time to time and i was a widow at only 40 years old if someone doesn:t know you the looks and the questions people wonder,if u have people that love you enought to understand that something is wrong and they are there for you inbrace it lupus is stress enough let alone having people in your life that make you feel worst and its not a good feeling its down right awful i am just soo tiered of chasing this disease making adjustments after adjustments it attacks when and where it wants,i am sorry but this is all i have i am just so angry that i am not incontrol of my body my older children i know they think mom isnt as fun as she use to be and i know its not their fault lupus is unpredictable and lonely i don:t want to discourage anyone but this is my truth
Lol! I used to be superwoman too. Yep, the house cleaning is now a room a day “when” I feel good. I have finally come to terms with that :). I sleep a lot too. Probably 10-12 hours a day.
Welcome
Welcome! You have definitely come to the right place. It took me a bit until I was able to open up to people about my health too. I had to process everything and figure out how to handle it all before I could deal with other people. Ya know? Like you, my faith has kept me going. I still have my days where I'm angry and a little hopeless and fed up, but without my faith, I don't think I'd be able to get through those rough patches.
It's raining here too! It's been raining since the tropical storm, Andrea, came up the coast. It's such depressing weather! But, perfect for napping.
Thanks everyone for your replies. It is nice to feel understood. I wish none of us needed to be here, but it is what it is. I can relate to sleeping in patches, plus way more hours than other people need to. I was always outdoorsy, so I do feel a bit caged up. One idea I had was to install some grow lights, and do an indoor garden, but then I realized no! At least it hit me before all the work and expense. Instead I am making up vases of silk flowers to cheer me up.
I am not well right now, so tire easily. Nap time. Yes, again. I think my cold is becoming something worse. Feeling like there is an elephant sitting on your chest can't be a good sign.
I will be reading. THANK YOU for a warm welcome, and for letting me share in your journeys.
Hello and welcome!!, hope that you feel at ease here soon!! It is really Relaxing knowing there are people who can understand you for being you and ALL the things that you are dealing with , not forgetting the pains , others don’t have a clue to…LOL. But just take deep breaths and just relax and when feel the need to talk (vent), ask questions are just to say Hello , remember we are HERE!!..Beverly L.
you will fit right in, your story is just like mine, i am so tired, i still havent learned when to quit and i am paying for it dearly, i couldnt sleep either so i walked up and down my driveway with my 17 year old dog we both needed it, i just wish i could sleep
This is such a great group that you will be glad to feel connected to others just like yourself. You will be uplifted and learn so much too. Welcome and I hope that you get to feeling better soon.
Lovely for you to introduce yourself to us and i was like you when i first joined kept certain issues hidden but the amount of members on the site helped me over come that with all the support they gave which is rare today and they're now my 2nd family besides my hubby who understands fully like yours also.
Everything your going through we all suffer, rest when you need to and when you feel better to do things pace your body and still take breaks in between because if not you will suffer....i suffer from OCD cleaning disorder and now my disability is at a low level it's like mental torture to me now because like you say, i've seen the days when going to work and cleaning was no object in my life.
Hello, we all here had some feelings like yourself, but stick and stay cause we all here are Living with Lupus and we know how you feel, we were there also at some point-smile. It will be okay! Just take your time and express or vent when ever you want , we will be right here for you!!!..Beverly L.
Thanks to everyone else who has posted, offering a welcome and caring support. Reading through the posts has made me teary eyed. You all are a blessing.
I so don't wish to dwell on health matters, but to learn how to cope better, and live life. Each time I feel it is down pat, another obstacle is placed before me. Isn't that true for everyone? Do some people handle changes in direction better? I feel like I keep failing the same test over and over. Some days it can be hard to see the next place to go, when a door slams shut in my face. I let my frustration with myself get the best of me.
Going to look to all of you as an inspiration. If you can make it through, so can I!
quick update like ballerina, storms heading our way, just not the brunt of them, but my area expected to get a bit slammed. I was hoping to get outside for a bit while it was cool at sunrise, but unable to sleep due to meds. My cold from the dark side has become a lung infection while enduring no air conditioning for a couple of days. Started antibiotic this evening. dizzy and off balance, I got up to see about a dog, and may have broken my toe on the coffee table. (black and blue and swollen after 2 hours) I was propped up as laying down I can't breathe. One of the lung meds has me feeling off, for lack of a better way to put it. Don't want to rest, but exhausted. Makes no sense, right?
If a storms heading your way expect more pain as it kicks the joints off more because cold is as bad as warm weather.
You need to either see your GP or A&E because your chest infection could lead to pleurisy, pneumonia and also an x-ray on your lungs would'nt hurt, as none of we can never afford to neglect any new symptom.
You need to fight through Lupus i know it's hard as i've got it the same myself at the moment with so many issues and i'm sp pleased to say that we've had members like yourself join finding it hard coping but coming on the site taking good advice have excepted it well and fight through it daily.
Please don't give up and see someone ASAP about what's happening with you.
hugs to you Terri. please take good care of yourself? Thank you for the prayers and healing energy, truly. I send the same to you.
site keeps hanging up on me, maybe the cosmos' way of saying get offline? There is storm damage to deal with outside but it has to wait. My to do list in our home is long and not getting done. I have been awake four hours and need a nap.
chest xray done, no sounds or signs of congestion (but cough productive now, yuck), and had pneumonia before, not that. afraid a bit because of chest pain, worse after coughing, sternum and ribs on one side in the back. and left sided chest pain goes and comes, but no history of heart issues. my body is whacky, that's all. using super strength allergy filters on the air conditioning. Will take a while to clean home air after the ac off for days. pollen on everything. Gotta love microfiber cloths - no cleaners, just wipe and go. The dust bunnies are safe though. Not leaning over for anything.
thanjks for being so caring and understanding. You have enough on your own plate. hugs!
Sometimes it happens, i had it with the sjogrens site this morning till i finally got in, sometimes messages have been written and sent but disapperared, so if you can copy and paste i always copy my messages just incase but the servers are quick as a rule.
Although you have stuff to be done if you need rest well put that first because none of we are any good without a certain amount of energy.
I am pleased the x-ray showed nothing and if your coughing it sounds like your chest is clogged up but the coughing does hurt as i have spondylosis in my ribs and christ it does hurt when coughing...Air conditioning is no good for your chest i don't know if you know that as it's dry hair and that will make you worse.
You rest up mate and i'll be intouch later to see how your feeling then.
spondylosis, is that anything like arthritis? if so, I am sorry you have to deal with it. my arthritis has spread from toes to neck, hands starting to look lumpy and crooked but they say it is not rheumatoid. I hope your lungs stay clear and you have less pain from coughing.
Air conditioning in the southern US is helpful. Very humid here, and a couples of days ago before the storms hit, the temp in shade was 97 degrees F, heat index 105! I do have thermostat wars with my husband. He likes to keep it cold enough to hang meat for processing. I am awake now at 4:15 a.m., and just turned it back up. It was 67! I am bundled in a thick warm winter time robe.
