keeping busy

[Brittany Leigh]

so im really curious,

for those of you out there who's disease is currently active, how do you spend your time? i don't know about you guys but i can't stand laying in bed all day! it drives me crazy! but you know if im too sick to work, then chances are, most days im too sick to be real active around the house. so i usually get pretty depressed b/c my whole lifestyle has completely changed and its so hard to adapt by going from being on the go 24/7, being the bread winner, and being the one going out of my way for others to having to just sit at home all day and trying to adjust to slowly allowing other people to be the ones taking care of me.

so how do you guys do it b/c i can't quite grasp the concept yet!?!
board games and the computer are getting old real fast. i have so many people suggest reading, but im the type of person that rarely can find a book that keeps me interested.

and i know this was a dumb topic to a lot of you, but i guess im just obsessed with keeping my mind occupied so i can keep reality from running through my head to a minimum.

-Brittany

[Doug]

Brittany-

Make a list of everything you want to do with the rest of your life. Then go through the list and write down what you need to do to accomplish it. Then go down the list and note how Wegener's granulomatosis will impact of the plan. The fourth part will be to revise the list from time to time as you become more aware of WG, how it affects you, and how it affects the outcome of your plan. As you reach a "new normal" (you will know it when you hit it- it's a medical state where you are better than you started and can start thinking about getting back to a more regular life, but with WG), revise the list again. The point of the exercise is to focus on the "I cans" and not the "I cant's". Try to find the positive things you can do. Read every page of this forum (I'm sure you have to some point, though your first issue is to get weggie advice on your immediate issues!). You will find comments that can lead you to other possibilities.

p.s. I was the caregiver for my elderly parents at the time I came down with WG. Don't think allowing others to help me wasn't an issue I didn't fight every day! It is hard. It continues to be hard. On the other side of that is that those who used to rely on you will find it hard to let you heal. As you heal, you will look less and less sick. But you will always have WG! "Why can't you help me move? You're over that whatever you call that disease you had aren't you?" That's typical. The answer is no. And the reason you might not want to help is you still have muscle weakness from your time in the hospital. Or you are having negative reactions to drugs and just don't feel up to it. As a young adult, you may have an even tougher time with these sorts of things: how can a person in her 20s possibly be so ill she can't lift a few boxes all day, one day, and help me get moved? Easy. When she's just gone through the first stages of the worst life crisis you can imagine!

[Jack]

On a good day -

Get up around 5:30
Shower, bathroom, dress (can sometimes take well over an hour!)
Breakfast,cups of tea, packed lunches for kids, empty dishwasher
Take youngest to school, take wife to work
Home for coffee and TV until around 10:30
Ironing, cleaning, house husband stuff with lots of breaks
Lunch, one hour lay down on bed
TV, garden, decorating and other house maintenance
Prepare dinner, pick up wife from work
Dinner and TV
Help with children's homework clear up dinner things
Read, go to bed around 10:30
Read some more and sleep (but only for a couple of hours at a time)

I sometimes fall asleep in a chair during the day too, but it is unplanned!

On a bad day, I do nothing, but still get up early. I could not stay in bed.

[andrew]

I've been lucky enough to be able to function (almost) normally. I'm the only one that works out of the two of us as my wife has a chronic illness and can't work. I just have to be REALLY careful about taking on too much work. If I do I come crashing down in a heap and it takes literally weeks to get back to where I was.

The mind wants to go at a thousand miles an hour but the ol' body needs to stick to the posted speed limit

[Sangye]

The mind wants to go at a thousand miles an hour but the ol' body needs to stick to the posted speed limit

Hilarious and totally accurate, Andrew... I'm gonna use that line.

Brittany, due to tons of non-stop complications my problem is a lack of strength and energy, not an excess. The physical is so difficult that it's also been mentally draining. I don't stay in bed, just some days I don't make it very far!

Regardless of high or low energy, some things I suggest :
1) Start a blog. I started mine several months ago, and being creative has been good for my brain. Since my thinking is so slow and muddled, I can feel overwhelmed in conversations. I get to write and express myself at my speed-- sort of slows the world down for me. I also use it to keep an eye on how much I'm over-involved with my own stuff. I use it to help myself grow and change, and I use it to help others to laugh, learn, learn about Wegs or chronic illness, increase compassion in the world, etc.... (I'm not advertising my particular blog and I don't care if you never look at it, I'm only explaining what a good tool they can be.) Being so young, you have a unique perspective and a lot to teach others.

2) Think of others-- find ways to volunteer or help others from your computer, read stories of others with chronic or severe illness, etc.... I follow online journals of several kids with advanced cancer or other awful diseases. It keeps me from getting wrapped up in myself, and everyday I look forward to hearing what's going on in their lives.

3) Get out of the house. Don't sit in the sun-- the drugs make you sunburn fast. But even just sitting on your porch is good. Listen to birds, look at plants, whatever. It's uplifting and makes you feel connected to the world. Go grocery shopping using the electric cart if you can't walk far. I'm still embarrassed about it (there's no end to my pride) but it does let me do my own shopping. And something about just seeing other people snaps me out of my own "World 'o Wegs."

I really feel that shifting the focus from oneself to others is key. Without ignoring or downplaying your own suffering, you train your mind to continually ask, "How can I help?"

Hope that, um, helps!

[jola57]

Brittany, as you can see your topic is not dumb, we all (and I mean all) go thru the same feelings as you. Andrew, Sangye, Doug and Jack have shown you how different and yet how similar we all are. One thing in common is that we all take it easy as our bodies tell us. I too have taken the electric carts in shops at the time when walking was just not an option. I used a cane, I still use a disabled sign (get one from your doc). Pride falleth before my face falleth on ground has become my motto. i went on line and dowloaded tv serries I never thought to watch but did, watched a lot of movies, blogged and met friends here for life. I do not and will not give up on myself. I will have ups and downs but with my friends and their wisdom I will survive and I wish the same for you. come here often and b i t c h and complain all you need. We will always listen.

[Sangye]

Jolanta--good point about the disabled parking permit. I highly recommend you get one, Brittany. You don't have to use it on good days, but you'll appreciate on bad ones. You can get a temporary one (6 mos) with the signature of most docs. Also, I recently learned you can park for free in any meter space anywhere in the country with one. That saves me tons of bucks at JHU, where it costs to park.

[coffeelover]

Number 1-THERE ARE NO "DUMB" TOPICS!

Number 2-Sangye's advice was therapy for me. Doing something for your own mind. for me, as a former musician and now wearing a trach, I cannot play my instrument of choice (clarinet) so I started an instrument that I can play (sorta at this time)-the guitar. I am by no means good and I am taking much longer to learn it than I thought I would, but it has done wonders for my mental health and keeps my mind occupied on something besides how I feel.
Sangyes other suggestion is to do for others in some form. This is another avenue that I pursued and I cannot tell you the difference it makes in my life to do for someone else.
I am lucky in that I was only bed ridden for a short time, but I do know that any day now my luck can change and I won't like it, but I will be prepared for that too!
I hope you have support of family and friends. I know I went searching for my family and friends to help me. I was not too proud to ask for support and love and even tonight after 4-5 months since diagnosis, I was thinking of reaching out to some I have not heard from for a while to say...."hey....I need you!"
Last, but not least as Jolanta says...use us to vent with. We have shells like turtles, but are as snuggly as bunnies.
my turn for the tomatoes!
coffeelover

[Sangye]

I spent yesterday with a friend who's had some illness in the past. (I don't know him that well, so we got to know a lot about each other in one day) The way we both spoke of our experiences--past and present-- was such a stark contrast for me.

He was driving me to JHU. I'm in pretty bad shape-- still fighting off the lung infection, which is veeeery slowing improving. But I developed a bunch of active Wegs symptoms this past week-- severe joint pain, stiffness, rash, increasing weakness. I hadn't had them this bad for 2.5 yrs.

I was in 9/10 pain all day, among other hard-to-deal-with symptoms. But throughout the day I still kept making jokes about it--laughing at myself trying to walk a few feet looking like I was 90, etc.... I noticed that my friend was incapable of laughing at himself, of taking his own stuff lightly. Even things that happened 30 yrs ago! Not like everything is funny, but nothing was funny to him. We definitely hatched from different eggs, you know? I can't imagine going through life-- must less any illness-- without finding something to laugh at.

So Brittany, as a new Weggie I hope you'll also find things to laugh about in between all the poo that Wegs can bring into your life. Sometimes just imagining how busy the Wegener's Poo delivery guy is can get me laughing. I mean, is anyone paying him overtime???

[Jack]

Things are never so bad that Wegener's can't make it worse!

But more seriously - it really is essential to keep a good attitude, even though it can be very difficult at times. During my stays in hospital, I met a couple of patients with very negative outlook (perhaps not without some reason), unfortunately, neither of them made it. I'm sure their attitude had a lot to do with the outcome.