You have control!

[murmur]

Hello everyone-

So I have been on this site for a few months now, and I really like it. But there is one thing- there is a ton of complaining to problems you can easily fix! I know it seems like this disease and medication can totally take over, but you can't give up on your life. There are so many things you can do; eat healthy, exercise (even just go outside), sleep, or anything that doesnt involve this! You are not a disease, its just a bump in your life. I understand that some of you have limitations, but I really want you guys to go out there and try your hardest to have fun with your life. So get off this computer and start living!

[Mas78]

I have to agree with your post murmur, I bet we have all had those days that we don't feel like moving off the couch but we do need to pursue our interests.
The year after I was diagnosed I still went to the local car races but I didn't sit at the top of the stands much as I did before due to getting light headed due to my lungs and blood pressure however I still tried to go.
I hope your post will inspire others to do what they loved before getting sick and feeling they can't do " that " anymore.

[kathy.parkerwhite]

Good advice but I just wish I would have known about this site at the onset of my WG! I could have used a place to bounce questions and concerns to. Between all the bronchoscopies, laryngoscopes, dilatations of the sub glottis all the different procedures I had never been through before left me a bit apprehensive and it would have been nice to talk to someone who had been through it! That's why I think these sites are helpful! Yeah we all have to go on living and not let WG rule our lives but learn to live our lives with WG but it never hurts having resources available to help educate yourself! Keep up the good work! Kathy

[brew22]

I do wish the people with success stories and positive results would also reply but I guess they are out living!!

[Psyborg]

Everyone is different in how they are affected by the disease. I'm certainly in the milder end of the spectrum and other than flares it doesn't really impact my life the way it does others, largely because it was caught early enough for me. There are others though with sever lung or other organ damage that do not have the same ability to get back out there the way I do. I do think what you are saying is true to an extent, but I'd caution that it's not simply a matter of just getting over it for many sufferers.

[Psyborg]

I do wish the people with success stories and positive results would also reply but I guess they are out living!!

It's a fact that when people are doing well they are not on as much. I know that when things are going really well for me I don't keep up the same way I do when I'm feeling ill again. :) That's pretty much natural.

[Jaha]

I agree that you should always live the best life you can. Bob your words are so true, every person with wegs has a different journey and some are recovering at a slower pace. It is always great to hear positive stories on fellow weggies recoveries. For those that are just getting out for dr. appts., this forum is a great source to communicate with others. One day soon I really hope to have the control, since I was very physically active before dx and kind of a control freak, that is truly my goal.:thumbup:

[Jayne 14]

I hear your words , and yes have fun with life - but it can be bloody hard some days !!!
This site has been a true friend to me - help & advice - don't knock people looking for support !!!


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[newbie]

Very judgmental post, murmur.
I am at the point where eating healthy is the only thing I can do right now along with taking meds and going to the doc. Sleep and a normal O2 rate are luxuries I haven't enjoyed in weeks.
I come here to visit with others so I don't feel so alone.
Thisvpost felt like the "you don't look sick" and "hey! At least it's not cancer" jerks I am trying to avoid.
now I'm cranky. Thanks.

[Yvonnea]

To be fair I think people need this site more when they are feeling down and unwell. Thats what it is for. Of course people should live the best life they can. I sometimes judge people if I think they use any illness as an excuse to opt out of life....and their responsibilities. But I am learning to stop that, as you never know what hurdles people face. Also we don't have control over the disease...yet...it is a sneaky one. But we do have control to how we react to it..and how much we let it "take" from us.

[Debbie C]

Murmur...I don't think anyone is " giving up on their life " ,the fact is we are all fighting for our life. People don't just come on here to complain,we come on here for knowledge,support and yes to vent when they are sick or down. I'm sure we would all love to turn back the clock and live our lives like we used too but in reality all of our lives have changed,maybe not so drastic as others. I do agree that eating healthy,excerising and doing what you enjoy can change the way you feel but lets face it,we all react to the disease and drugs differently so you can't judge people for being on here when maybe that's all they can do right now.

[Rose]

I have permission to share this post which was written by another WG sufferer in another forum.

A friend once confronted me because he didn't understand how I could be so sick but not look it. Was I exaggerating? Lots of people have some form of chronic pain but it doesn't disable them. If I am in such pain then where does it hurt right now? Can't I just suck it up and get on with my life?
His question got me thinking about ways to help others understand diseases that are rare and invisible to the naked eye.
So, on behalf of my seriously ill disease buddies, here goes an attempt to explain the unexplainable.
Have you ever had a really bad case of the flu? Do you remember how the fever made your skin feel achy and sensitive to the touch? Do you remember the ache in your muscles, joints and bones? Do you remember feeling so weak, dizzy and sick that you couldn't stand up or even sit for any length of time? Do you remember how cloudy your thinking was?
That is how I feel on "bad days," and I have bad days three or four days a week, every week for the rest of my life.
Do you remember when the flu began to subside and you felt better? You probably tried to do too much too soon and wound up back in bed with a relapse. This is how I feel on good days. I feel like I can get up and do things, and I jump at the chance to do chores, see a movie, go to a restaurant, go to church. But if I push too hard I "crash" and wind up sick in bed.
Along with this I have migrating pain. My hand now, my back this afternoon, my left leg, my right leg. Sometimes the pain is so severe that I want to run away from it, but it isn't possible.
I take a lot of medications to quiet nerve impulses, reduce inflammation , help me sleep, etc. These meds help but they also have side effects that cause additional suffering.
And this is the way it is for me every day of my life, with no end in sight.
And yet I am a happy man most of the time. I am learning to listen to life and ignore the pain, but when I get tired I lose my focus and my mental discipline collapses. The pain comes crashing in and it becomes a bad day.
I write this so you may understand. We all have our burdens and challenges, even you. This is mine.

I thought this was well said.

Rose

[gilders]

murmur, I think I understand the main point of your post which I hope could be summed up with something along the line of "Don't allow this illness to rule your life more than can be helped".
But it could easily be read as though you think it's a minor illness (or "just a bump in your life") that people are using an excuse to be lazy and wallow in their own misery.
Your title "You have control!" could be disputed somewhat. I followed all my advice from my Dr, took all the medication I was prescribed and kept returning back to work as soon as my relapses/flares went in to remission (until my health deteriorated too much - now I do not work). None of my relapses were under my control. Neither is the effects of medication, scaring in lungs, renal failure, rheumatism (this list could go on and on) which all cause severe fatigue.

I do agree that you can't give up on your life and I certainly wouldn't recommend people to sit in front of their PC/laptop ALL day reading through posts. In fact there is the odd few members that seem to post a lot about new research and such. I do worry that these people maybe tilting towards it taking over their lives, but at the same time I'm extremely grateful for all the effort of searching the internet for anything they think we all might find of use.

I personally don't think you meant any malice in your post, but others might.

As well as the physical limitations this illness can really bring down your mental spirit. Once that happens just getting out of bed can be a challenge and although the best thing would be to get out and about and do something fun, when you feel so low you don't even want to do anything fun because nothing feels fun. There is many mornings where I don't want to get out of bed, but I always force myself as I know I could easily slip in to a mental state where I'd hardly ever bother to motivate myself enough to get up.

So yes, get up. exercise, go out, go to work, do all this to the best of your ability.

[kelly]

took the words out of my mouth awesome

[im so blessed]

I agree whole heartedly with gliders!!! Hats off to murmurs for being able to swim above the tide tho. But in reality its not that simple for everyone. We are all on a different journey! I feel this is the very first place in 13 years that ive found to come be me. It truly needs to be (iand is i think) a place of understanding!!!