Hi. I'm new to any chat groups, but not new to the illness. I think I've been in denial, even after how sick I've really been - still refusing to give myself some slack which makes me even sicker. How do you learn to be kinder to yourself?
That is a good question, how do we learn to be kinder to ourselves? I think that in today's society it is terribly difficult to actually get yourself in that mindset. All that is important is productivity "Time is money" etc. Even those around us, family, friends, and even husbands can't quite understand the disease (and who'd blame them) and can't see that rest and pacing yourself is just so essential.
so, is it little wonder that we don't do it. Well, actually I do! But I am lucky. I have a husband who does see what a difference it makes and I grew up around this disease and saw just how ill Mum could make herself at times through trying to fight through it. I'm lucky to have complete understanding of my disease through Mum and, especially, here. Also, I have to say that the Belgians have a really good sense of the life work balance. They work to live, they don't live to work.
Being on these boards and seeing that I am not the only one that needs to rest and that needs to look after myself makes me feel somehow less "lazy".
Also, anytime, we're not feeling so great, everyone in chat and here on the boards kindly reminds us that we do have to take it easy at times, that pacing ourselves is essential.
It is not a nasty word, it is not something to be ashamed of. It is a way to improve our daily lives and quality of life.
So, with time, we get there. Some more than others. I think a lot of it is about accepting things and feeling OK with not being who everyone expected us to be.
Welcome to the boards!! You ask a million dollar question! In today's society we feel like we have to do everything and BE everything. We feel like we are a failure if we can't. (even though we shouldnt)
It really takes some reprogramming and supportive friends and family to remind us that if we dont take it easy and rest ourselves, we can't be ANYTHING!!
I hope you find this place as helpful and supportive as I have.
Thanks guys, it does help to know there are others out there that do understand...
I was dxd (finally) approx 9 years ago, six mos after my second marriage w/a three yr old son in tow. I was on plaquenil, which did nothing for me and was switched to quinicrine, NSAIDS, prednisone and celebrex, which did fine for a few years...Then I started dropping things, tripping, then tremors, slowly in my right hand, then both hands, my head & neck, I shuffled my feet, I couldn't walk w/out a cane or assist. I couldn't drive. I was only 36 yrs old w/a 5 yr old son, OMG! After many tests & scans it was determined lupus had crossed the blood-brain barrier - I had lupus cerebritis. I looked like I had parkinsons, and learned the world can be soo unkind w/strange looks & comments. BTW, John's Hopkins didn't even know what to do w/me.
I went through 2 1/2 years of chemo and high steroid doses via IV. My Rheumy is the greatest - will never leave her. She brought me through and by the grace of God, you cannot tell I ever had such an episode. The only residual is being post menopausal by age 40.
I finished nursing school, became a nurse have been working for about 4 years - not w/out ups and downs - I work a few weeks, get sick for a month, its a vicious cycle.
I catch weird things too, that no one else has in my house, shingles & chicken pox 3 times in 2 years, staph infections, chronic sinusitis & bronchitis and I have asthma.
It seems like the infections are coming more frequently and I am developing food allergies to things I have always eaten - very scary. The fevers, night sweats, "sausage fingers", mouth lesions, blurred vision,lupus headaches and fog are coming back harder than before. I usually try to work or keep busy to "outrun" it, now that I am down (my docs won't release me back to work yet) I wonder am I making this up or do I really feel this way?
Has anyone developed new allergies upon being dxd? How 'bout chronic sinusitis/bronchitis?
Now for maintenance I am only on Quinicrine, Effexor, OTC NSAIDS, Allegra, Advair, Proventil and have started taking many Vitamins. I am on a short dose of prednisone and 2 ABTs (clindamycin & augmentin) for 2 weeks.
You have been through alot - and sound like a very strong, brave person to have come through it all!
Its great that you have found a rheumatologist that you trust and love...they are hard to come by as I am sure you have seen!
I normally take Quinacrine myself, but have been off it for the past year for baby making reasons. I too have had many strange infections and weird allergies ...I was also diagnosed with chicken pox a multiple of times, which I could never understand! LOL I even developed an infection in the base of my skull which the doctors hadn't seen in 20 years...I was the hit of the hospital for my 10 day stay!
I am in New York..but have several friends in NJ..would love to move there myself, but cant due to hubbys job rules, he must live in NY.
Sorryy to hear you are becoming symptomatic again, maybe you should call your doc for some adjustments of your meds..nip it in the bud before it gets any worse