As time goes by, I am finding I'm altered somewhat by each flare. Is it just me?
It seems after each flare, I have a new thing going on. I am also thinking that my capacity prior to the flare isn't quite reached after the flare - beit mentally or physically.
Mentally in a way of personality even - it seems just a smiggin' less that before (is it the chronic illness depression being developed)
Will - just not pushing myself or willing to push myself like I used to.
Physically - less strong, more symptoms, more pain and fatigue
Is this a pattern you guys have recognized? Does each flare slowly reduce us?
It definitely feels that way. I'm in a bit of a rough spot right now just because I'm basically unmedicated and am facing the possibiility there may be nothing out there can make me feel better... or worse, that nothing is going to stop my body from killing itself. So I suppose I'm left with just hope :)
I read a blog post yesterday about flares, and the writer said something about coming out of it and then mourning the time lost, and for me that's the hardest part. So much time lost in bed, unable to do anything else.
I think every time our body throws a new symptom at us, every time it hits us full force, we just lose a little bit of ourselves. Perhaps some of us are better at getting it back than others.
Turn your frustration over this into motivation for action. With the onset of fibro in 1983, I started to research this, I facilitated a chronic pain support group for 6 years.We supported each other for many years after the group was shut down by the MD's in an effort to line their pockets. The MD group lasted 6 months. This forum provides a lot of the same support.
It does feel that way!
Had (have) flare this spring that included rash, muscle weakness, increase in neuropathy symptoms & double vision. Getting worked up for myasthenia, lymphoma, & myosotis.
This time I am going with the flow pretty well even though I don't like it!
Well, Yes! It has too. Our bodies were meant to support us, not turn around and attack us from inside..Little white blood cells marching with their spears and giving us the old..what For!
This is what is streaming and coursing thru our veins. It penetrates every bit of our being. It robs us of our dreams and sleep and yes, our personalities. Oh what a sticky web it is. We yank and pull trying to escape the dreaded black widow.
Sounds dreadful and hopeless at times. But it is not! We are all fighters. Our sheer determination is what makes us stronger than most! The flairs knock us down and yes set us back, but we can educate ourselves, provide comfortable areas for rest, listen to Joe. Support others. One of the strongest assets we have is each other. The more I fight to make one of you understand that it is not hopeless. It is sad, but we can live like this...
We can benefit with a wonderful place like this, that we can come to and express any thought or problem that we may have. Joe is right...Turn it into a positive. Gotta look real hard for that one, huh...but is out there..
Again, I have found myself Blessed beyond words that God lead me to this site. Yes, it has altered me, but not always for the worse. Just look at who I have met!!!!!! ~sass~
Keep in mind that nobody gets out of life alive! All of our bodies are designed to die eventually. Eat right, live healthy, die anyway. And really, if you think about it, would you really want to live forever? What kind of tradeoffs would there be? No children allowed? Where would we put everyone? And most importantly, would we savor our lives the way we do now?
Sure, life can be difficult. Especially for people with chronic illness. But we can choose to focus on what we can do, or on what we can't do. We can enjoy the beauty around us, of the ugliness. We can focus on the shooters, or on those whose love and actions touch us and make our lives better.
(My mother-in-law died Friday night; she was a lovely woman, with a large family. Thanks to her, we have a lot of sisters and brothers now.)
"Two prisioners looked out their bars. One saw mud, the other stars."
Hugs to all, Sharon
Yes, we all die, Sharon, but I'm only 33. I have two young children, and even 20 years from now, they will be in their early 20s and still need me. Eh, really, do we ever stop needing our mothers? :)
No, we never stop needing our mothers. Luckily, with most autoimmune diseases, it takes a long, long time, and I have relatives who have lived with autoimmune diseases for 70 years.
Enjoy your kids! The days can be long, but the years are short.
Hang in there -- things get better.
Sharon
Thank you, Sharon :)
I haven't had a spell that keeps me in bed for a long time. In fact, I prefer not to stay in bed even when I am suffering and miserable. I try to always get dressed by noon and I have learned to "hunker down" on the couch. I have a big plastic storage container that I keep pens and paper, calculator, telephone numbers I might need, a scissors to cut out coupons and many other little things that keep me happy.
When I was feeling much worse I generally tried to do something during the day when laying around. I tried to read and when my brain didn't work I watched TV. I always keep the TV on when I am laying around feeling yukky. I need the stimulation and the input to help keep me up to date with life. I didn't always remember things but I tried.
I just can't abide laying in bed when I am more ill. It makes me feel so depressed plus it keeps me away from the patio door where I can watch what is going on outside. I am too noisy to take to my bed.
I have to add that I have been having symptoms since I was 20 years old and I am 69 now. I have had so many different symptoms and had lots of pain in joints for many years off and on. Bladder issues that were extremely painful, terrible infections, back pain, bad balance issues, etc. I managed to work until 2003.
When I worked I had to walk a lot of halls to see patients and I staggered like a drunk, flet likke vomiting, my head would spin, I was so weak I could hardly pick up my feet some times. Needless to say it darn near killed me. Here it was more autoimmune issues and I thought I was just suffering from sleep deprivation.
I think that we are all different and all have a certain amount of pain and illness that we can tolerate. However, I do know from experience that when you feel bad it is possible to crank up your perserverance and manage to complete more tasks. It is not fun, but it is possible. I worked with quite a few women who were ill and suffering and I don't know how some of them made it through the day, but they did.
I think that when these flares start to get a person down it may well be that a depression is taking over because of the chronic illness that we suffer from. Remember that depression is actually a physical problem that results when our brain isn't getting the chemicals it needs to keep the emotions and physical symptoms in line. Many of our symptoms during a flare can also be caused from depression. Also, keep in mind that the thyroid can also cause symptoms that are very similar to other autoimmune symptoms. Treat the thyroid if it is all screwed up and the symptoms leave quite often. Good luck to all. Irish
Quote from: irish on July 23, 2012, 10:34:11 PM
Treat the thyroid if it is all screwed up and the symptoms leave quite often. Good luck to all. Irish
My goodness woman, you are a true warrior!
So how do you do that? Treat your thyroid as if it was all sckrewed up.
Make sure the thyroid gets tested to check whether it is all screwed up or not. It can go from high normal to well and truly screwed up in a four week period.
'High normal' usually means 'screwed up' - or it does for me anyway. Treating it made a huge difference.
An area of my expertise. Lol...The endocrine , like the exocrine system is an extremely complex machine. It is a finely tuned operation, each gland dependant on the other. I open with that as to stress you should find a endocrinologist that experts in thyroid. Most are a little more in the speciality of diabetes. When making an appointment ask if he test for TSH, T-3, T-4, free t3.... Balance is important and key.
Your pituitary is your master gland. A malfunction there can throw balance off everywhere else. I have had 2 tumors there. And another of my auto-immune diseases is Hashimotos Diseases. Basically, my thyroid is dead. So, multiple thyroid medications.
My father had thyroid cancer, my son has Hashimotos as well. My Rhemuy insists that my PCP does not treat it,
only an endrocrinologist.
You have a parathyroid as well, nothing to do with the thyroid, except their placement are very close. It controls your vitamin D and Calcium. But again if one of the other glands are off, it may be too.
Having your thyroid checked out and seeing where you stand could mean less pain and possibly less glirs, more active time.
For example just Low vitamin D can cause you to have body pain...B12 being off can do it too.
I am being treated for thyroid and my flairs are honestly better o much. I am still in pain, but I am like that anyway ,with back issues.. But I do not find myself incappacited or stuck in bed. Until this lung issue, my employers paid me back my sick leave every year.
Irish is a genius for mentioning it. Scottie inspired me to post. It takes a few trips, several months sometimes to get it straightened out and a few simple blood tests.
Sass*
Let me know if you have any questions. I may not know the answer bit have an excellent resourse that will.
Wow, nice catch Irish and Scottie!
I've had thyroid antibodies, TSH, T3 and T4 checked and all are normal - and not high-range normal, but perfectly within normal range normal (except for the antibodies - I had none of those, so I guess that's well within normal range too ;D )
My flares are *just* SjS related. If I try to push myself, it will just prolong the pain, fatigue, nausea, fevers, etc. Rest and allowing my body to recuperate is the best option, although it's not always an option I have with two young children and I do work part time during the fall and spring semesters. When I'm laying in bed, I'm not laying there feeling sorry for myself - I'm sleeping, because the fatigue and lethargy are too overwhelming to do anything else. There's no pushing through it.
I can work with aching muscles and throbbing joints. I have before. But the nausea, fevers, and severe fatigue - we have to respect our bodies, and not overdo it when we know we shouldn't be. Sometimes, I know I just need to slow down and rest, and I'll put a movie on and crawl into bed with my girls. It's not what I want to be doing, but what I have to do.
MS, Very wise! Believe me, your girls will remember the times of laying in your bed and watching those movies. And I am so impressed that you include them in your rest and relaxation time. Bravo, for being such a good mom...I know that it is hard. Sometimes , I think on the mind and spirt as much as the body..
We have come a long way and have a long way to go. It is a shame that can do nothing for it, but alas, I can not.
Humor is the best way for me to fight it. Laugh! Concentrate on what does bring joy and happiness for you. Joy, Joy, Joy! any other way we are miserable.. And that misery in attitude brings the stress and then the Flairs.
Have you had your Vitamin D, Calcium and B-12 work up and Iron>>
What are your numbers? And on your TSH, T3.T4 were these read by an endo or a pcp??
Like scottie said early a high norm can throw her in a tailspin...YOU ARE AN INDIVIDUAL PERSON! Just because the numbers fall close, does not mean you do not have a problem. And there is a conversion done as well, between the T3 andT4....Most of these docs only look at the TSH and not the conversions..If TSH is normal range they do not worry about the others unless it is WAY off.
I was hardly on anything before...going to an endo i found out I had Hashimotos and my medication took a huge jump..it took me finding a second endo to get balanced out. The first one, was good enough,,but hard to get in with and slow,,,but when I asked a question about my ultrasound of my thyroid and he told me that I was not academically educated to be qualified to ask him questions..That I had never even finished a university program and it would be a waste of his time to explain it to me as I did not have the ability to understand it...I fired him on the spot and walked our. Found another endo and have been expalined and educated beyond belief...Some of these guys you have to beware of...They think that they are above us an not worth anything but robotic treatment...
That is why we so often find ourselves in this area of confusion. We hurt, we battle for years to find an answer..I mean literally battle to find answers. We get to the point that we are more doctoring ourselves than our doctors do..But we keep searching.
My main problems started in 1987 with the Brain tumor and the sudden onset of my Parotid gland swelling off my face...And I have been searching for so long. Fighting the battle alone. Braving the words of rejection from friends, family and husband. when a doctor says, oh all your labs are normal..nothing wrong. bo home and get some rest and you will get all better. And we continue to hurt and [ush ourselves, knowing that our bodies are not right. My husband said , well that dr said nothing is wrong with you, now we can go home and get back to life..you are fine! Now I find myself with this rare lung disease caused by sjogrens settling in both lungs..A fairly hopless case actually..Never ever had any lung issues...But Boom! It is there now..
DO NOT IGNORE YOUR BODIES..I TRIED FOR SOO LONG TO GET HELP..well it took this teminal condition to finally have somone say...hey you got a problem and you have had it a long time. I feel no justice there...I only want to stop it from happening to anyone else!
and having "just" Sjogrens is more than just! My prayers for you now....
~sass~
Lol - that's why I put the just in asterisks; even if I don't have lupus as well (which is still up in the air) it is MORE than enough!!!
My rheumy looked at the thyroid numbers and I also read a bunch about it because I really thought it was my thyroid when all this started. I know my thyroid is ok right now but it is something I will make sure we keep an eye on since there's a lot of thyroid disease in my family.
Thanks for the info!
as always, my pleasure...and I feel relieved knowing that your Rheumy looked it over too..
It is nice for a person to know.."well at least that is okay"!
I wish you rain to dance in and joy to sleep in with stars to light your way when the storm passes! ~sass~
oh yea and no pain!!!!! always no pain.........
Im not sure if its each flare knocking me down, or just the fact that as time passes, im getting worse.. Cause I am.. It does seem to happen after each flare. Some new pain or problem.. Im more tired than before. Old pains are worse, etc.. I have toughed it out for years.. But it is getting harder to tough it out. I do make sure I get out of bed everymorning. Get dressed and try to do something productive. I have an 8 year old still at home, so he is the biggest reason I get up and moving. If its a really hard day for me, I tend to his needs and rest in the recliner in between.
Luna
ms, You know your body and it is great that you are able to rest when you feel the need. It is also awesome that your kids can rest with you. We are all different and I was by no means putting you down for resting.
When I was going through all the stuff I mentioned I had no clue that I had autoimmune diseases. I was blindsided when I found out I had myasthenia as all the weakness I had was myasthenia plus I had breathing issues that could have killed me----but I had no clue.
I should add that I had been to a very big clinic for lots of testing back in 2001 and was told that I had no autoimmune diseases. I was told I had no sjogrens, no myasthenia ( in spite of positive tests) and no hashimotos ( in spite of more positive testing). You had better believe that I was mad as a hatter in 2003 when I was diagnosed with sjogrens with a chance lip biopsy.
Then 3 years later diagnosed with myasthenia, hashimotos and severely low t-cells. I wasted a ton of money over many decades trying to find out why I felt so lousy. The funny thing is I worked like a dog, made hay a few times, remodeled a house inside and out, had a huge garden (1000 hills of potatoes one year) and just kept plugging along.
I didn't die even though I thought I would. People at work asked me why I kept working and I told them "no one has told me that I am sick yet". Like most of us I had to work and I worked as long as I could. I have been off work on disability since 2004 and have done enough sitting to last me a lifetime. I am down and up. If I can move I am up at least every 10-20 minutes cause I can't sit still that long. LIke I said, we are all different and life and autoimmune affect us differently.
Rest when you need to---that is the only thing that we each can do for ourselves that helps some. Good luck. Irish
Quote from: slccom on July 22, 2012, 04:21:47 PM
Luckily, with most autoimmune diseases, it takes a long, long time, and I have relatives who have lived with autoimmune diseases for 70 years.
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Today .. I find that to be depressing! :P
Quote from: irish on July 24, 2012, 05:16:37 PM
I am down and up. If I can move I am up at least every 10-20 minutes cause I can't sit still that long. LIke I said, we are all different and life and autoimmune affect us differently.
Rest when you need to---that is the only thing that we each can do for ourselves that helps some. Good luck. Irish
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Me too. I will feel really bad and I'll lie down for 10-30- min and I'm back up. I don't feel like getting up, but I am bored to death. With my severe back, neck and foot pain there isn't much left that I am able to do. Just sitting is painful. Typing this is painful, but it gives me something to do.
I used to make jewelry. Now it causes even more pain for me. I plan to try making some soon, just to see if I can do it. But it's so boring to be so disabled. I had to quit teaching in '94 and I've always kept busy. Started my jewelry business then...18 yrs ago. I'm so hoping that God will restore my health so I can do more. I hate feeling useless. That is the worst.
I'd better quit rambling on about myself!!!!
But in reply to the question......it IS a good question. I traveled with my husband 17 hours in 2 days (by car)... that was 2 wks ago this Friday. I am just now beginning to recover from that. We will not drive that much in 2 days again. It was too costly for me. I was so sick I felt like I was going to die.
I know what you mean, Jazzlover. When my husband was diagnosed with chronic fatigue syndrome (20 years ago), the doctor said, "The good news is that it isn't terminal. And the bad news is that it isn't terminal."
Sharon
Maybe flares are causing or contributing to disease progression. I've often wondered about this. I avoid triggering flares at nearly all costs because of this nagging question. I'm not depressed or anxious. When I'm flare free, I don't hesitate to jump into action. I have yet to hear of a doc who believed that anything more serious than mere discomfort was happening during a flare. But considering how poorly understood Sjs is, who knows?
After many years spent undiagnosed and pushing myself hard through flares, today you can sign me off as...resting when I need to, ;D
Steph
I do think each flare we have does something to our bodies. How could it not? Just as Sass said, we are being attacked on the inside.
I also think that we each have our own way of dealing with our illness. Some of us have lots of good days, but many of us never have what we would call a good day.
Every day I wake up and see the sun or hear the birds is a good day because God has kept me here for a purpose. I may not always know what it is, but if I am patient I will find out.
Love and prayers to all. :)
slc...
CFS is often Lyme disease in disguise.
sktaylor..Love your attitude..It is one thing that will help sustain you.
I am like Irish, not as many flares. Mine is daily. I hurt pretty much 100% of the time, everywhere except my hair. But some days are less than others. But I do not seem to get the flairs like most, where you have flu like symptoms and ill. And I rarely sleep..when I do I get little cat naps and wake up about every 15 minutes.. My sleep study shows that I never sleep for more than 20 minutes and that was rare. And after the 2nd more extensive study they said that on both studies I never go into REM sleep. So I guess that is my Flair.
And when I get in the sun, I become weak and can hardly stand. I have pounding in my head and it takes me several minutes to feel normal again. I sweat profusely and seek shade or indoors. It really drains me. And now with this lung disease the heat is hard to breath in. Cold weather is just as bad. But all in all, I don't think I have to live with the type of Flairs that most of you have.
Thanks. A lot of things can cause CFS, which is really more a description of symptoms than a real diagnosis. Luckily, between us we are very knowledgeable and keeping on top of things. Lyme is a real possibility for my hubby, but after 20 years there isn't a lot to do to treat it, even if he could find someone willing to.
I'm going to contact you privately about our musical careers!
Sharon (I play mostly bass clarinet, but would play contra-bass exclusively if I could!)