View Full Version : How do you deal?

07-17-2009, 05:51 PM
I'm really struggling tonight. I haven't really been flaring - at least not that i ca tell - but I'm really tired, day after day. I can get a few hours of work in at maybe 60 or 70 percent of normal, but my early afternoon I'm practically worthless.

I can't do much of anything with my wife and kids, and I'm scared to death about the future. Between diabetes and lupus, I feel like everything i do is being taken away -- I like to cook (eat), but I have to watch every bite I take. I like to do outdoor stuff, and love the sun, but now it makes me sick. I've always liked to work, and have been good at it -- a year ago I was a VP making well into the six figures, with a very nice company car. lost that job, got another one for a LOT less $$, (but it is lower stress). In the meantime the stress of working and going to school and a bunch of other stuff put huge strain on our marriage, and we were just getting things working again when this lupus diagnosis came up.

Now, I'm worried about keeping my job (I have three kids 9, 14, 17, and 5 years of alimony payments left). I'm depressed that I have this big strong body -- that's always been able to do amazing stuff -- that can't even get through what a few weeks ago was an easy workout. I can practically feel the muscle melting away. I feel badly that I can't do active stuff with my kids. And as much as I try, I have a really hard time taking anything positive out of this. Or even coming to grips with it.

I know this all a normal part of the process, but damn. It sucks. In a way, I'd almost rather have some better-known, acute disease where I'd have a more clear-cut outcome -- either get better, or not. I really hate the thought of being 44 and thinking the rest of my life will be this foggy, fatigued stumble.

Sorry for the 'poor me' whining - but I had to get it out of my system. I'm going to a big family reunion in Colorado for the week; if i can stay out of the 9,000' altitude sun, it should be fun. When i get back, I'll try to get into my therapist. But really, as so many of you on here have said, no one understands what having lupus is like except other people who have it. So if you have any advice, fire away.


07-17-2009, 06:45 PM

Having Lupus is not only a physical disease, but an emotional one too. The feeling you have will pass...but they will seep in again and again. With each sneak in we get better at handling it..and they become far and fewer. We learn, we change, we adapt...so they become easier to handle...

How has your sleep been...?

You need to find ways to manage your stress because Lupus feeds off of it..then we end up on the merry-go-round pain, fatigue, insomnia, depression.

Have you spoke with your doctor about your fatigue? Are you taking steroids? Any immune suppressants? Maybe just a tweak in your medication is all that is needed.

Taking more pain pills than before..they could be making your tired. Review your medication and side effects and see if they are contributing to your fatigue too..

Has anything change from a few weeks ago till this recent flare...note any triggers so you can be prepared for the next time...

How is your diet...eliminating processed foods?

Are you doing some type of exercise....a swim, stretching...just to keep flexible and too it help oxygenate the muscles. When I stretch I feel energy. Try a stretch right now while sitting...reach both hands above your head and reach, reach for the ceiling...hold..relax..again. Raise you hands again and lean to the left...stretch....hold and now to right.

Take in a deep breath..hold and exhale through your nose slowly..again...feel the oxygen...

Your therapist may not understand the disease per se, but she/he should be able to understand loss, the depression, the change, the stress..the grief. There are therapist who specialize in illness...ask about.

I've been in extreme fatigue...two years ago I would have been swallowed whole. For me, I find breathing, stretching, eating light, keeping the body is some kind of motion I press on. But I do have it easier. I don't work, retire early ..9 years ago, I am 48....I have no deadlines, nor children...just my husband and I. He travels.. I am alone 4 days out of every week in a state where I have no family. That was, still is hard to deal with..but I keep focusing on...we will sell our new built home and I will return to Seattle...soon.

I do look at life differently than two year ago..I use two years ago, because that is when I stumbled into here, lost...felt like you. Who am I...what will become of me...40 more years of this...sheesh. I felt I was closer to the dirt than the dance floor. I was in so much pain and exhaustion...I wanted to be in the dirt.

Now I am okay. I don't fall into the hole often..if I do, I can get out pretty fast...

We can only do what we can do when feeling awful and when we feel good, enjoy it all...with pacing of course...

Head hugs...tomorrow will be better...a better outlook...
Sleep well.

07-17-2009, 06:48 PM
hey Br ian,

Im sorry to hear you're having such a hard time. Ifyou were recently diagnosed i can see how you're feeling like this, it normal and we all go throughit or have gone through it at some point. The best advice i can give you would be to stay positive. I know it sound like a crock of mess right now, but as you will grow to learn lupus is a very emotional disease as it is physically. So if you are down emotionally your body will turn on you and then you just start feeling sorry for yourself and that never gets us anywhere. And if you've never let these feelings out its time you started, you cant keep stuff bottled up. So vent, complain, we understand you here. I hope tomorrow is better

Love, Chriss

07-18-2009, 04:56 AM
Wondering how you are doing this morning, Brian....Love, Oluwa

07-18-2009, 05:46 AM
Thank you SO MUCH for your kind, caring (and pragmatic!) response last night. It means a lot.

I'm doing a little better -- I'm always at my best in the morning, and for once it's not very sunny here so maybe I can even get outside. Going to try to work out, too...it drives me crazy going all week without a workout.

thank you for the support - it does feel better just to vent sometimes. And frankly, reading these boards also helps me realize how much worse it could be. I need to focus on the fact that I don't feel that bad (just tired, really - some rash, some aching, but not bad) and compared to what you've been going through, or so many others, it's nothing. Like a former boss used to tell me, if we could all lay down our burdens and choose to pick up anyone else's, most of the time we'd come right back to ours.

Hope y'all have a great weekend! I'm packing for Colorado today.

07-18-2009, 06:23 AM
Hello Brian,

I know how you feel. I used to be in pretty good shape and was very physically active. Did all sorts of crazy stuff, rock climbing, skydiving, like you, I love the outdoors. Your words really hit home-feeling muscle melting away, living the rest of your life in a foggy, fatigued stumble. Your words could, at times, be my own.

I'm 41 years old. I was a business owner, had my lifelong dream come true and was successful enough that I had to pinch myself every day and ask if it was really real-it was that good. My real life had actually exceeded my dreams. I had to sell the business, and say goodbye to the dream, and my 20 or so employees, some damn fine people. I lost alot.

But I've also gained so much, and 5 1/2 years into my SLE diagnosis, there are many positives to be had every day. I know things seem very dark, like there is no hope, but things will not always be this way. There may very well be some difficult adjustments you will have to make. You have already had to deal with loss of a job. But you can make adjustments, learn your new limitations, and even discover new talents and interests. Just because your original path can no longer be followed, it doesn't mean that there are no other paths worth following.

As far as "whining" goes, you're not whining, you're pissed off about this crappy disease screwing with your life, and you're venting. That's a good thing, nobody here will ever accuse you of whining. Anyway, I've spent alot of time in Colorado in both the Durango/Silverton area, and I went to college in the Denver area. Where are you headed to for your reunion?


07-18-2009, 06:30 AM
Thanks Rob - it's good to know there are others who have been screwed up by this $%&^@ disease and learned how to deal with it.

We're going to a camp near Granby, on the back side of RMNP. We've been going there for years -- about 60 of us, all descendants of my paternal grandfather. Now we live from Florida to Alaska and everywhere in between, so this is the one time (besides funerals, unfortunately) where we can catch up. It's a beautiful place, the only thing that scares me a little is the intensity of the sun at that altitude, so I've stocked up on Neutrogena sunscreen, UPF long-sleeved shirts, and of course my new 'pretentious' hat. :)
thanks for the support-- it's especially good to have another guy on here, we're kinda few and far between!

07-18-2009, 06:40 AM

I hope you have a great trip in Colorado, enjoy yourself.... you deserve it :yes:

Talk to you later,

07-19-2009, 06:30 AM

I am so happy you are talking to us and trying to reach out to others that know what you are going through. Everyone is right.....this will pass and will sneak up on you every now and then but it really does get easier. As for your family, they love you and if it is meant to be they will hold your hand through this battle and help you fight every step of the way. Just remember to keep communicating with them about everything. Once you stop communicating, it all bubbles up and is not good for you, your stress level or your Lupus. Give them a chance, you may be surprised :veryhappy:

Oluwa is right keep stretching. Your body may not be able to handle a hard workout and that is ok! There are other things you can do to keep moving. I have started doing yoga. It is very relaxing but at the same time really focuses on stretching and using our muscles so they do not wither away to nothing. On good days I will do pilates. This is a bit more in the stretching department but this will help you keep the shape of your muscles. On the really hard days try to get in the water. Water therapy is great for Lupus patients. It feels like everything is lighter in the water and we are able to move more and still work out our muscles. There are so many alternatives that can help you......just do not loose faith in yourself or your own body.

Make sure you are getting lots of sleep. I have to use a sleep aid but it is worth it! When I do not sleep I start this vicious cycle of feeling like poo!!!!!! Sleep is the key fighting ingredient against our disease. Rest during lunch if you can and you can always try going in a bit earlier and leaving earlier in the day when you start to get really tired. You never know unless you try.

I love Colorado and I hope you have an amazing time!!!!! I have been wanting to move there for some time and I may actually see it happen sooner than later! Enjoy every minute with your family. Enjoy the cooler temps and protect yourself from the sun......sounds like you have a good plan where that is concerned :veryhappy:

Just remember, we are all here for you! You never have to apologize for feeling down. We will be here for the good times and the bad times and will always listen and offer some encouraging words and advise when needed. You always have someone and we all know what you are going through. Please hang in there and remember, this to shall pass!!!! I am thinking of you and sending you encouraging thoughts and gentle hugs and again, welcome to our family :grouphug:



07-19-2009, 07:44 AM
widebody, kind of funny you refer to the pretentious hat, check out mine, my friends refer to it as my shade tree, let me know if you want info, that and water babies spf 70 sunscreene and always a long sleeve shirt and plenty of water. As every one esle has said and as you feel a bit better today, it seems to move in cycles, you learn to adjust, improvise, adapt, and overcome, to quote Clint Eastwood from heart break ridge. I also have spent my life working and playing out doors, I have been a journeyman lineman( working on powerlines) for the last 25 yrs. logger before that. camping, hiking, scubadiving, etc. etc. God has blessed me with a very loving and understanding wife and little girl among other wonderfull children that are older and grandchildren. Focus on the wonderfull things in your life and give thanks for them. when you are not feeling good let them and us help you through it, we have all been there and will continue to go through it. Best of luck take care and God bless, Jim.

07-19-2009, 11:22 PM
Just checking in to see how you are feeling tonight. Hope all is well and you are both physically and emotionally feeling a bit better :angelic: