sorry to come here and vent, especially being so new to the forum. I found out a little while ago the local support group I was going to attend Thursday isn't going to meet, so I need some help. I've been flaring for a little over a month now. What the docs originally thought was the flu at the beginning of November turned out to be a flare. I was hospitalized for a week. I'm on 50 mg daily of prednisone among two BP meds, water pills, potassium, pain meds and will be going through a 6 month regimn of cytoxan.
Of course you all know I am tired, that's an understatement. We are all tired. I'm frustrated I can't do what I did before, hoping to gain the energy to do what i can. I feel guilty my mother and husband are taking on everything, work, school, the home, the kids etc. They are both getting tired as well.
I need to know what some of you do to get past the hard days, the days where you are so frustrated, tired, angry, feel pity for yourself, don't want to talk to anyone and snap at those who are brave enough to talk to you days. I don't want to be like this, I really want to be that happy patient, that happy sick person who sees some positive somewhere...I'm just having a hard time seeing it right now.
I can understand your frustration. I am new to this forum too, but there are a lot of people out there who maybe can help us both. I was dx'd about 3 years ago with Lupus and have had a couple of big flares. they tried Prednisone and I found out we have to do something else. Even on 5 mg I became very aggressive, irritated at nothing, snapping at family and generally being out of control. This may be some of what you are feeling. Talk to your dr. to see if they can lower dose or try methlprednisone.
There are days when you just don't want to get out of bed, but you have to. The old saying use it or lose it, is true. Even if it is walking around your back yard or just gentle range of motion exercises, you need to move. Energy begets energy, if you put just a little out, you may find you feel a little better. Maybe your family should go to the support group with you. A lot of families just don't understand how hard it is. You look ok, so why are you tired, why can't you fix dinner? The support group may help them to understand what you are going through and how to better help you.
Stay on top of your medical care. Keep pushing your dr. if there is anything new that may help you. My rheumy says he doesn't treat the lupus, he treats the symptoms, which sort of makes sense.
I wish you the best, hang in there, don't give up, just one day at a time. That is all any of us can do.
Remember attitude is everything. I know it is very hard to think positive when you have such overwhelming fatigue, but one good positive thought each day can add up. Trying to do just one little thing a day can make you feel such a sense of accomplishment and help with your mental state.
I was given the advice to do a little bit and then go sit down for a while, if it works for you I say do it. Just to keep putting one foot in front of the other and forcing one smile a day for your husband and mother would be enough. I guess what I am trying to say is it will all get better and looking for that light at the end of the tunnel is what will keep you going. Good Luck keep us posted as to how you are doing. Coming here to vent is another good thing to do, and let it all out. That is really OK with all of us.
Hi to All. On bad days, I force myself to find a funny moment, with a witty friend, a funny book, my dog (a very smart, but imperfectly behaved terrier), etc. I find if I seek one good laugh, I usually find more than one.
This disease is very hard, I agree. So I remind myself that *I* am the person who has the biggest impact on my mood... which is not to say that I can pull this off consistently, but only that I try... well, mostly...
And I mutter "BETTER DAYS AHEAD!" a lot, too. Best wishes, Vee
thank you all for your advise. Everything you all said made perfect sense. Sometimes it's easy to loose site of how simple it is to get through the tough days. Sometimes, I just need a good reminder and smack up side the head.
the good days seems to be more frequent this week, so that is good eh?
I see a nephrologist tomorrow for the first time, wish me luck. I have a Cytoxan treatment on Monday, hoping for little or no nausea.