Hi everyone, hope things are not too bad for you. I am posting about something that is frustrating and frustrates me at the same time. It's about the fact that there are times when i am really, really sick, I'm naturally scared of those times, sometimes when a flare up gets that bad it doesn't leave all that quick. My memory of the ordeal lingers....So since i have had the dreaded UTI'S looked into and am on a low dose antibiotic that I can actually tolerate, I have been feeling quite a bit better. Got a new hair style, bought some new fall clothes and have been excited to do some deep cleaning at home. The kind of cleaning that requires step ladders and lifting above my head and carryig things that are a little bit heavier for longer duration. I started to poop out yesterday after I cleaned my pantry, organizing my spices, pasta etc....since i've been sick there has been no attention and I had stuff on my top shelf I never knew I had! Did I mention that when I get really unwell my memory just goes away......you know I have 7 pkg's of spagetti, and 3 containers of mustard and spices ::) well I won't have to buy any for a looooong time ;D. Anyway yesterday when I was getting tired (even though I was taking it slow) I started to get afraid. I knew I was going to pay for the activity. Sure enough today has been rough, inflammation everywhere especially in my face and neck, even in my ear! I get so frustrated with the fear of things going south on me and then it only makes things worse. ??? But the reality is that I have a very good reason for the fear. Anybody else deal with this problem? Thanks Sandra
Hi Sandra :)
I deal with it in probably a much more negative way than you do. My days of ladders and lifting above my head are over. I just don't do it. I remember painting ceilings - I used to like decorating but I know if I did it now, it would take me five times as long and I'd feel totally knackered - so I just don't do it. I used to push it when the kids were young but now it's a case of - sitting back and not caring. Now that sounds depressed - but it isn't. I use my energy up at work for five hours a day - and that's about it.
The rest of the world can think I'm lazy - I just don't care! :) I hope you feel better again soon.
Take care - Scottie :)
Hi Sandra,
I hope you start to feel good again, and maybe take more breaks while doing those much needed chores.
I can't believe I just said that with a straight face. ::) I'm not one to slow down either once I get in gear to do something. Then like everyone else I pay for it really good.
I know that fear of getting a flare only to well, as I'm sure we all do. Unfortunately there isn't much we can do about it, except to do things in moderation. Yeah sure, easier said than done.
Take care and take your time,
Pooh
Sandra, I am glad to hear that you are getting some relief from those bladder issues. Also glad that you felt well enough to care about your hair as that is one thing that really goes to pot since I have been unwell.
I have to admit that I have never heard anyone talk about fear in relation to having the flares. I guess I have never thought of it that way. I can relate to the "day after the day before" as I think that most of us can. We all know that when we can't do things for a long time and have a good day we go completely nuts and just over do it. I would think that I would learn, but I just go along with it and work and enjoy the feeling of accomplishment. I know that I will pay for it and sometimes I will pay for it for more than one day but like I tell my hubby---I know what is coming but I just don't care cause I work when I feel better.
Don't fear these flares in your condition but do try and take it easy. The big thing that I noticed is that if I can keep a little in shape I don't hurt as bad. This past year I have really gone to pot and have to start more physical activity cause I know that I will have more energy. Hang in there as you will feel better again and you will turn around and do the same thing again. I think it just comes with the territory. Irish ;D
Hi Sandra,
I hear you!!! You sound just like me. When we start to feel good, we want to get so much done and feel so good getting stuff accomplished. But we pay for it royally.
I have been so frustrated, too, because I have been in a flare for about four weeks now with conjunctivitis in both eyes on top of that. I feel useless and depressed. But in these four weeks, any day I thought I felt better, I tried to conquer the world and get everything possible done and of course, try to please everyone along the way. Then, of course, crash!! Can't get out of bed the next day.
I have been bringing out my SJS books and reviewing them again and am determined to change my thinking once this flare is over. It will definitely be easier said than done. But have to learn to do only one big thing a day. Then after that is done, even if I feel good still, stop. All the medical books speak of making a list of things that need to be done for that day and then only doing half the list. To me that is really frustrating because I want it ALL done!! But then I will end up like I have been for this last month. I will have to force myself to remember that once this flare is over.
Anyway, just know we all understand your frustration. And as much as we don't want you to feel like that, it helps us all that others truly know the feeling!
Liz D.
Hey Sandra,
Its hard not to worry about what will happen next. I went for a walk yesterday for an hour. It was just a stoll along the beach with one of my dogs and some friends but i had in the back of my mind "will this make me sick tomorrow can i go to work" its always there but i work very hard to not pay attention to it.
I have learnt ove the last few months to change my total way of thinking. Its not easy and sometimes i still want to go like a bull at a gate but we cant. We have to re prioritise everything.
A little bit can go a long way. Just pace yourself and you will be fine. Do too much and you are inviting a flare. Prepare and plan. My whole day today is planned around having my ultrasound and getting some sleep so i can do night duty tonight. Thats it. The other stuff can wait. its not important.
Its good to see you are pampering yourself with your hair and stuff. Thats important too.
Take care and always remember you can vent your fears here.
Pud