Work / Life / Health Balance - HOW DO I?

[Dank]

Hi Folks,

I'll attempt to keep this brief. I have 2 mutations which have granted me an albeit somewhat slightly normal life. Meaning I have managed to work full time, and trick my employers into thinking I'm mostly healthy (till usually I end up in the hospital and then have to explain why I'm out sick for so long...). HOWEVER, I am absolutely terrible at juggling all of this. I've struggle very often quite a lot at balancing these things. I've talked to many of my dear friends, I've talked with people who have their lives together and family members, and I just can't understand how to balance priorities. Here's my life: I'm 26, I work full time as an almost sr level computer nerd of sorts (I'm a consultant now, but was a Sys admin, and probably will be changing jobs again here shortly for something more stable..), I live with my girlfriend of almost 2 years, and my friend who I've known since I was about 10 and I have a lot of friends that I hold close to my heart and soul that I share my brain with from time to time. It's incredibly difficult to set time aside for anything health related because of how on-the-go I am.

My day typically: wake up, grab inhaler, brush teeth, wash face, and then head off to the office, to a client's office, or sit down at home and work from here. Sometimes I grab coffee on the way to somewhere and either a donut, bagel, or a take a cliff crunch bar for breakfast. I head to office, do things, before i know it lunch, i run out and grab food from somewhere or come home and eat something I had here, and then back to the office. Sometimes I'm running between office and home and datacenter, other times I'm in an office all day. And then I get home in the evening, sometimes there's more work to be done, sometimes I have other things going on with friends or girlfriend...groceries, etc. Before I know it we're eating some sort of dinner, I sit down to "relax" which typically involves computer games and then my evening is completed, I goto sleep and that's my typical day. The weekends I try to do adrenaline filled activities (i autocross my car, and have a motorcycle) or try to plan things with people I dont have time to see regularly (friends/family).

I've had nurses tell me, I've had friends and family tell me, especially the gf, I need to make time to do things for myself. Yoga, exercise, other crap. I'm fortunate enough to have good lungs to where I don't need to do this extra stuff, or at least that's what i've told myself this whole time and I do realize I'm stunting the longevity of my lungs, but how do I make time? I've spent the last 5 years working myself upto the position that I am in currently, so I can provide for myself (and the gf) and so I can have the money to do things that I want to do. But what good is it if I'm just going to be sicker later? I spent almost a month at the start of this year with a PICC in, and I wanted to change my life and change things after that so I can avoid that sort of trouble moving forward but it seems so hopeless.

Seeking advise or guidance on how to balance these things in my life. I manage my relationships with my girlfriend and friends/family pretty well, and I manage work pretty well, but my health is falling to the back burner and I need to change it, I know I do, I just don't have motivation to do so.

 

[nmw0615]

I went through something like this last year. I do not have a job, like you do, but I occasionally watch a couple kids and at the time last year, I was going to have a month long stint of watching them. My health has been declining for several years, and the decline has sped up over the last year. I am a perfectionist, and it's very hard for me to not give 100% of myself to everything I do.

My father pointed out last year that I give everything I can to other people and my physical health, but when it came to taking care of me and my mental health, I gave almost nothing. He said that if I continued to give nothing to myself, I wouldn't have enough to give everyone else. I couldn't give 100% to everyone else if I couldn't give the same to myself every once in a while.

I ended up not being able to watch the kids for those four weeks because it was more important to make sure I was healthy than it was to provide a service. Sometimes, I have to tell my family that I just need a day when nothing is asked of me. I can do whatever I want or need to do, and I don't get any requests for help from my family. They all know it has absolutely nothing to do with them, but I just need a day. I sleep in almost every single Saturday, just so I can feel completely rested for a day. All of this makes me feel incredibly selfish, but in turn, I feel a lot more able to balance everything in life. By my being selfish every once in a while, I am able to be selfless more often.

 

[jaimers]

maybe add some more physical activity into your weekend plans. if you're an adrenaline junkie seek out some more physically demanding activities or take up running, hiking, rock climbing, biking, etc. to get in some more exercise. also not sure if you're supposed to be doing any form of airway clearance and nebulizers but there is a vest called the AfloVest (i think) that is battery operated that might be an option during your commute or at lunch at the office do fit in more treatments. there are also small nebulizers that you could have at the office to use as well. If you're playing video games in the evening perhaps fitting in a breathing treatment with the vest during that time.
I'm not working currently but worked full time until about 11 months ago and then went part time and now, thanks to hubby's job, don't have to work at the moment. I know what it's like to be so busy at work and wanting to spend you're free time doing anything other than treatments. You can certainly do this but it will all catch up to you at some point which it seems you're realizing. I think the key is to make small changes and build from there. you're not going to completely overhaul your lifestyle overnight. set goals for the week, then the month, etc. until you're able to make taking better care of yourself a habit.
I know there are a lot of people here that manage to balance their health and other aspects of their lives well so I'm sure they'll chime in and have some great ideas! good luck.

 

[suros8]

Is there a possibility that you can work from home for a portion of your day? You might want to add more of a med routine and exercise to your daily regime. That's one of the more impactful things that my hubby has done, and it's had a significant increase in mental and physical health. Meal planning, which you can ask family to help with, can also be helpful to make sure you are getting enough calories. Having enough fat and muscle really helps get through the hospital stays and bouts of sickness. But it's hard. Really hard. Everyone struggles to have enough time for self, work, family and friends.

 

[Deb]

"If it is important to you, you will make time. If it is not, you will make excuses"
This hit home with me. You literally have to get to the point that you decide that your health is important. I will admit that this took me many years. There was a time when I was working, raising two children and trying to do everything a super mom does. I never missed my children's school functions and just kept pushing myself. This definitely took a toll. My kids are grown now but I have totally changed my thinking now my health comes first before everything else. I never miss a day at the gym and have found that it has totally improved my health. Now my house is not always clean and sometimes I'm behind on laundry but I still put my health first. It's what really matters.

 

[Jennyvb17]

I'm in the same boat. 31- manage to work full time, and have a social life. But I'm exhausted when I come home. To the point where doing treatments doesn't cross my mind. I've set alarms, I've kept a chart. Nothing helps. Treatments are exhausting and by the time I get home there is no energy for that. I mountain biked with my friends- I can't keep up. We go hiking- I can't keep up. So what do I do? Quit my job? Who pays for things then? I'm not sick enough for disability- only at 50% fev1.

If anyone has a real answer. One that works in the real world I'm all ears. But skipping work, or just doing it( like my mother says) doesn't work!

 

[Printer]

You have to realize that there are only 24 hours in a day. You need to sleep for 8 of those hours. In the balance you have to fit in 3 square meals (a power bar doesn't count). You need to make time for treatments and Doctors visits. Then you add in the work that you do.

To do all of this we have to make swap offs. There are family functions that we can't attend. Ball games that we can't attend but watch on TV. Friends that we can't be with as much as we like. Many things in our lives suffer. The up side is that we will live longer and healthier.

Or not. It is your decision.

Been there, done that.

Bill

 

[Aboveallislove]

Totally agree with Bill on this and as a mom the "just do it" resonates, because, you know what? We just did it for years and years and years, "sacrificing" things that we might like to do or places we wanted to go, because we had treatments to do, nebulizers to sterilize, or doctor's appointments to go to, or sick relatives to avoid. But frankly, because it is someone I love more than myself, it isn't even a question or even for that matter a "sacrifice" but if it were me or my health, I'm pretty sure I too would struggle thinking it impossible to balance it all.

 

[Danielle Michele]

Hey Everyone,
I am 29 and a special education teacher. I work at a Charter School and the hours are above and beyond any 9-5 desk job! I have been teaching for 5 years and the closer and closer I get to 30 I am realizing how hard it is to keep up with a work life medicine treatment balance. I am also "on the healthier" side of things- my FEV1 is about 58%. I am recently in a drug trial which has been showing great results but the upkeep with exercising is nearly impossible. I do my vest every single morning for a full 20 minutes but doing my vest before bed is slacking big time! By the time I get home around 6-630 I shower, make dinner, and pass out! I completely agree with you Dank. I must work its not a choice I love what I do and I NEED health insurance to cover all my nebulizer treatments such as Cayston as well as my vest and DR. visits. I want to continue to work as long as I possibly can....What seems to be the age or time what I finally make that decision to cut back on hours? days?
also can anyone else sympathize with the "oh but you don't look sick" phrase!! Oh wow you are so lucky to be thin and be able to eat so much!

 

[Dank]

I don't understand how to not work. I have bills, debt, and I support my girlfriend while she goes to school and works barely enough to cover her debt and bills. I don't want to be in the position where I'm being jobless and lose all these material things that I've worked hard for. And Danielle I've heard everything a lot. It's irritating really. I have a lot of wonderful friends and they all offer advice but none of them have any clue how difficult it can be just to get out of bed in the morning or to struggle to find energy throughout the day, or manage coughing all the time and have people ask you "are you sick?" often. Luckily my PFTs are somewhere in the "ok" range for now, but I don't know how long I can keep it up.

I've tried to integrate Yoga into my life, it has not been successful.
I've moved into an apt complex with a gym, I rarely use it. (I have some thoughts about working out anyways but I'll reserve that for another time)
I have a gym membership to several gyms, several have indoor pools. I love swimming but I hate being cold, and I hate that feeling when I can't breathe and I'm shivering because my body is working so hard to keep my lungs moving that it can't stay warm.

I hate rushing around and I'm always late. I'm about to switch insurance and hopefully get my pulmozyme and tobe again, but right now my treatments are basically just an inhaler in the morning and in the evening. I have never been one big on routines..

 

[Printer]

Dank:

I guess that I didn't understand your question. I thought that you wanted to "balance these things in my life". I read all of the postings here and I didn't see anyone suggesting that you stop working. Having "several gym memberships" seems excessive and time consuming to me.

Sorry that I can't help.

Good luck,
Bill

 

[Dank]

I appreciate the feedback. I'm trying to understand how to better balance everything. The "just make time for it" is probably the best answer anyone could have given me, but also advice I've been trying to give myself for many months...years now. Being defensive about needing to work and things was basically just to say that I don't know why it's so easy for others to just not work and they seem to turn out fine. I don't get how that works in today's society in America. Anyways different circumstances. Trying to figure out how all of this is supposed to work, and I'm failing at it.