I've come for a moan...
I'm really miserable. It seems life keeps throwing things at me and I just can't get on top of it. I just have no motivation anymore...what's the point? My body just sucks.
I think I've been flaring for a few months. I know I pushed it through summer so maybe that's why I'm paying for it? I also missed a week of hydroxy, so maybe that has set me back. My vasculitis is now coming up again, first time in years. I have no energy. I'm not eating right (if I'm struggling emotionally I find it hard to eat...my counsellor says I'm punishing my body). I feel so useless. I look in the mirror and I am grey, which isn't helped by an olive tone to my skin probably caused by the hydroxy. I don't want to do anything, everything leads me back to this place, sitting on the sofa, pointless and empty.
I've been getting one infection after another. I had a dreadful water infection last week...so much pain. I can't shake thrush for more than a few weeks. I never feel well.
If I still feel like this at Christmas then the dr has said we can try cellcept. Am I really at the stage where I have to give in and take chemo medicine? Is this me now? Is this it forever? How do I keep going like this...Inbetween looking almost normal and being completely stuck on the sofa.
And the guilt!! My family have to work around me and my poor husband is filling the gaps I am leaving. I started this week thinking maybe I would try and see the time I have to myself as a blessing (like Paul in the bible....an affliction with purpose). Nice idea....
Sorry for the moan.
This is a great place to vent your frustrations. I think many people here understand just how you feel. It IS rotten when you're suffering the effects of a long flare. There's way too many things we can't do no matter how badly we want to do them. We watch as our homes/apts./yards/ fall apart, get messy or worse, while we cannot physically change the situation much. Friends and family are neglected. We can't meet with them and go do something fun to get our minds off of our pain. We feel alone. How many people that we know can really understand why we aren't able to do more? We don't want anyone inside our homes because it's embarrassing--unless you are fortunate enough to have family to take up all the slack. I do not, and all that work is waiting for me--visible everywhere I go in the house.
I do like you did: push myself, then pay for it later. How else to get to all my Dr. appts., the pharmacy, etc.? Then add in other obligations! Does this give you a feel for how others like you can understand your predicament? I hope so.
I am fortunate that I can push despite the pain and limitations and get high priority stuff done. I am not couch-bound. I can tolerate a lot of pain and keep going. I do pay for it later in the day, or the next day, etc., but I have parents and a husband with cancer to care for and I do my best. I cannot say I understand being couch-bound day after day, just some days. This must be really hard for you. Do you enjoy reading? Or writing to others? Posting on this website? A trick I use for instance: I love gardening and planning how to get the trees/plants I want that fit my weather here in FL. I search images of gorgeous plants and learn if I can use them in my yard. This lifts my spirit and distracts me from my pain. Distraction can be very very helpful. I admit I can't get out and do much actual work in the yard like I used to, but my husband can do some, and I've hired a reasonably priced man from Craig's list to help us make these dreams come true. You may have some favorite interests that you could explore in this way.
I take an old cancer drug: methotrexate. After the first time I took it and was nauseous all day, it stopped bothering me so much and by the 3rd time it didn't affect me at all.
You sound depressed and I don't blame you. It is worth keeping an eye on your mood to see if this is temporary or gets worse for a period of many months. You can use this period as you mentioned to grow spiritually and as a person by what you watch on TV or read. Just like Paul did. Maybe that is what this time is for---growth of some kind.
I sincerely hope this is a temporary period of limitations and you will move into a better place soon. The word 'flare' indicates a period that is worse than usual followed by a return to a less miserable, more functional state. Hang in there!
"for I know the plans I have for you...plans for good and not evil...plans for hope and a future." Jeremiah 29:11
It's Sue again. You may want to read the thread "soooooo depressed and low right now....". There seems to be some helpful info in this one.
Take care, Sue
This is my first post on this form. I spend a lot of time posting on benzo buddies .com. It's for people going through benzo withdrawals. I was on 2 mg klonopin for 10 years, given to me buy my rheumy for sleep.Benzodiezepines are bad stuff. Since I was diagnosed with lupus 11 + years ago, only one thing has worked for my sx, distractions. I never feel like doing anything but any distractions,mainly exercise seem to help with all my sx.When I lay around all my sx are maginified. Distractions even help with my energy. It is just real hard to get started but the pay off is worth it. Good luck
When you say you don't want chemo do you mean the iv make you sick kind (maybe cyclophosphamide) or the pill (maybe imuran)?
Just wanted to let you know that both are better than suffering the way you are now. My iv chemo was a year and a half long, caused sickness, was hard, etc. but put my lupus in somewhat remission for 15 years (as in it never went to more organs). I presented initially with kidney involvement. I think it was worth it because in those 15 years I raised my daughter, maintained a home, was a crappy wife, finished university, became a teacher and taught full time for 9 years. Unfortunately my body has pooped out now and I can't work due to cns lupus, but I had a good run!!!
Imuran is not nearly as bad as cyclo...
Would love to hear more of your story!!!
Hi there. I am so sorry for what you are going through. I want to mention a couple of things.
First, the WORST thing you can ever do is to stop the plaquinel for a week. While it takes several months for it to start working it can set your body in a tail spin very quickly. I know this from personal experience. No matter what you have to do always take that med.
As for the chemo.. In MOST cases it sounds much worse than it is. For me the first few weeks I had an upset stomach and felt bad the day of my pill (which is once a week) but after I adjusted It is really much easier than some of the meds that my neuro has me on. I don't notice any difference that day now. We think of "chemo" as in what cancer patients get and although it is one of the meds used, the dose is so much lower and the combination different that you don't usually go through what they do. I will admit that I lost some hair early on but I had been losing hair from Lupus so I permed my hair (to make it more curly) so it looked fuller and it wasn't noticeable. About a year and a half later I realized that I still had that wave in my hair! It was only then that I noticed that my hair texture had changed as it grew back in. Thanks to the perm I never noticed.
Do whatever you can to make yourself feel better. It will not only help you physically, it will help you emotionally as well. We are here for you always
Hi peeps. Time to check in...
Thanks for your kind answers. I know that there are people who suffer with the same stuff I do and being able to talk about it with people who understand is really helpful.
I push and I push, I can tolerate pain pretty well and got used to my limits (when I feel poorly but save the energy for the things I must do, because I have had 5 children in the period where I have been ill..all my adult life so far) and my absolute limit where I keel over and simply cannot do anything at all.
I am fortunate in that I tend to pace (not nearly enough) so I can keep going and I can pretty much achieve anything I have to with effort and a struggle. I just haven't been able to do this for months now. So sometimes I truly am sofa bound, a state I have avoided since I was first ill 23 years ago.
Missing a week of plaquenil and a summer of sunshine (before I realised I had become photosensitive) I think, is what set me in this downward spiral. I am sometimes soooooo depressed it consumes me. I'm seeing a counsellor...phew lol. I have had no breaks in plaquenil for 2/3 months now, so I should start improving.
Failing that I think it's time for the chemo...cellcept. Yes, I'm afraid, really afraid. I have always been able to pull myself out of a flare (with drugs and/or willpower..I think the willpower idea is in my head....lol). But you have reassured me that it probably won't make me REALLY sick for a long time and that life will certainly be better than it is now. I don't have anything left to lose now...and I think that is what scares me. Lupus rarely makes me afraid..I stare wide eyed at it and pretend I am fine, eventually my energy comes back just before I can't bear it anymore and then I pick up the pieces, catch up with my responsibilities and move on. This time I haven't reached that place where I can pretend I'm ok. I'm drowning in it.
Cellcept is a tablet. I know it kills my immune system, but it might actually be ok. I had 'dapsone' at the beginning and it broke me...gave me haemolytic anaemia and I felt bad. In those days I guess the answer for the docs was not to use it and hope steroids would fix me, but of course they didn't!
I have to keep busy. I have to see that God is in the miracle AND the 'not so miracle' because frankly, if God can heal me, then he can chooseNOT to because he knows better and I trust him.
Meanwhile, crochet, papercraft, laundry and sometimes meals are my only obligations. I just want that to be enough to keep me satisfied for now.
Thanks again for all the things you have said. I'm so glad that I can share these things when I need to without feeling judged and weak. Thankyou for being my friends. Xx