All dressed up and too sick to go.

[zizzcat]

Hi everyone...I am so depressed! This happens a lot lately.

I was looking forward to having a nice time w my husband on his two days off. I rested for two days to hopefully be up to it. Today on his second day off we were getting ready to go aee some friends. I was exhausted, even after a 175.mg dose of Imuran ( I take it all in the a.m.) but acted as if and went through the motions of getting ready. We got to the car and I simply said,"I can't go." And went back inside and felt hopeless. Does this ever happen to any of you?

I have an appointment on June 6 with my rheum docs to consider whether I may have Wegner's at my ENT's request. I have lesions in my nose and problems with my throat. The Imuran does control the pain but I am exhausted all the time. I know that something good will come of this appointment, but in the meantime I feel useless and time passes by so slowly.

I could really use some encouragement. Does this ever get better and stay good for a while?

Hope

[drz]

Yep, it is way too easy for me to over do things and then need to rest up for awhile even when I really want to do something else. Many times I have had to change my plans or scale back my activity especially in first years after the Weg diagnosis. After awhile I got better at pacing my activities to increase the liklihood I could make the things that were most important to me. I have also learned to be a lot more flexible about my plans and recognize that my physical condition at the moment will often determine or change what I can enjoy doing.

Many people here though have such a good state of health they can do things that most normal healthy people could never dream of doing so having GPA doesn't mean you will always have problems with fatigue. Depression over the loss of health and activities important to your identity is also part of adjustment process as you learn to accommodate what ever changes the GPA caused in you and your life. Some times counseling is very helpful to help with this adjustment. Best wishes for better health.

[Alysia]

Hi Hope.
at least you got dressed and almost into the car
if it was me, maybe I would have stayed in my pyjama...
Im so tired sometimes that Im doing only what I MUST do (like going to work) and after that Im totally exhausted.
but when it comes to do something very important or some challenge, the "adrenalin" gives me some power...
after it is done, again Im "collapsing" but with a sense of meaning which change the all experience
what Im trying to say is that maybe you can find some power to do things which give you meaning and satisfaction, and this way you will feel much better, not only depending on docs & meds...

[Dirty Don]

Hope...your name befuddles me...you continue to fight it...but, as your question implies and drz states...YES, you'll get thru all this. I, too, have cancelled many times and even when I didn't know I was really that sick...it's part of the process...you did the right thing in that you put you first and rested. This is a different life for you now...it includes rest, needs understanding, and foregoes all other interests...way it is. You're getting closer all the time...I wish your docs would get off their proverbial donkeys and dx you...you have WG...it's obvious...you need appropriate treatment to start feeling better, and even that will take even more time...sighs...it is patience who is your biggest ally here...hang tough lady!

[annekat]

Hope, what you are going through is perfectly normal and expected with Wegs. And YES, it will get better. You will have more energy and be able to make more plans, but there will probably always be the awareness that you need to try not to overdo it. It will most likely get to the point where you can follow through on all your plans and then may collapse and need to rest later at home. And I think Alysia is right that we can summon up the energy or "adrenalin" for a challenging situation that may come up unexpectedly, but yes, we will feel it later and need to pamper ourselves with needed rest, like sleeping in, if possible. This scenario has happened to me many times.

[marta]

Hope, I'm so sorry you're going through this but if anything can give you comfort, it might be knowing that we've all been there and felt exactly what you're feeling right now. It will get better, and you'll become better at gauging and tweaking as you go through your day to ensure that you have just enough jam left to get you to bed. It's quite a fine art and you only get to be this type of artisan by putting in the miles, so it is only people who've gone through it that really get it. Our docs, family, friends, employers all have different degrees of wanting to understand and trying to understand, and understanding, but ultimately it's you. You know your body, you know when something is really wrong, or mildly wrong, and one thing I've learned through this ride is to trust your body and listen to it. Everything else you hear about your body is based on theory and a bunch of books, and also how much did that doctor really read up on this topic. Trust your gut and keep pushing for a diagnosis (I'm assuming you haven't got a solid diagnosis based on your comment and Don's comment) and get the right docs with the right knowledge giving your the right treatment for what you have.

Just out of curiosity, you are on Imuran... any pred? The Imuran stops disease progress, but the pred stops the inflammation which stops the damage from progressing on your affected organs/systems. You need both. Before they (medical types 30 years ago) combined the chemo and the steroids, they were unsuccessful treating the disease with either one or the other alone. You need both.

You will get past this point Hope and once you know the beast you fight and the kind of fight, it becomes easier to deal with it. Slowly but surely you will get over the hump and enjoy your life again. I remember getting a little upset reading on here in my early days that life wouldn't go back to the way it was, it would be different. I liked my life before. I loved my life before. But funnily enough, this has opened so many different doors I wouldn't have walked through before and what I'm finding on the other side is so amazing. I'm doing things now because of this disease that weren't in my realm of imagination. So absolutely cool. So kudos to you for listening to your body and doing what's right for you. Keep doing that and when a bizarre door opens up, peek inside, who knows what your new life as a Weggie will be like. But always stand up for yourself, be it with doctors, people who don't get it, or whoever, this is one of the lessons from this journey.

And just on a parting note: If you're on pred, you don't get any adrenalin (since it's produced in the adrenal glands which we render useless with the pred) so all that energy you ladies are willing to the surface comes from your own beautiful souls, nothing to do with adrenalin. Just another testament to the power within and learning to control/use it because we have lost control over so many other things. I keep finding more and more positive things out of this disease every day, I can say that they far outweigh the negative for me.

Bla bla bla - this is why I don't come on here much. I talk way too much. Sorry.

[annekat]

I sort of knew that about the adrenalin, Marta, unless maybe we have tapered low enough on the pred that our body is starting to produce a bit of it again.... I noticed Alysia put in in quotation marks and I followed suit in reference to her post. Sometimes, though, we do rise to the occasion and summon extra energy somehow.... maybe we're learning to tap into the pred that is in our bodies.?

I have a tendency to go on and on, too, and then look at it and go "how did it get so long?" But on here, there are no limitations, and everything YOU say is valuable!

[zizzcat]

Hi,,, Thanks everyone for the info and the support.

I've been sick most of my life, at increasingly higher degrees as I got older. Not being able to follow through on commitments is not new to me but today it really got to me cause it hasn't been this bad for a while. As my Imuran was increased, I would have less pain and more energy. I've started to be able to make friends and hope to keep them. I have two daughters and a grandaughter. My daughter and 4 year old live 2 hours away, but I haven't seen them in months. I can't drive more than 1/2 an hour at a time and am hoping that a change in my treatment plan will help me be able to visit when my hubby can take me.

I use to be Ble to take prednisone but have developed a serious adverse reaction to itand to most meds I use to take. It causes inflammation and makes me pas

[zizzcat]

Pass out (sorry about that). I also take Plaquenil, and Baclofen, a muscle relaxer.

When the immune suppressant levels were working well I had plenty of energy for the first time in my life. Now the illness is becoming stronger than the medicine but I believe we'll catch up to it in time.

[annekat]

I have heard of people on here taking hydrocortisone instead of prednisone, don't remember the exact reasons, and I think it does pretty much the same thing, but don't know if there's any chance it could cause fewer adverse reactions for you. It does seem like prednisone would be hard to go without if you have WG. Perhaps if they determine you do indeed have it, they will reassess what meds to put you on and how to deal with the fact that you can't take pred. Or if they find you have something else, that could change the available options, too. Best of luck to you and I hope you are able to feel better soon.