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View Full Version : Managing stress/loneliness ... Apologize in advance - length



GlassHalfFull
01-16-2007, 09:06 AM
My life is so so far from the "Carrie Bradshaw" lifestyle (albeit a watered-down version) I used to have. (BTW, did I mention I knew Candance Bushnell's real life husband slightly and used to have a little flirtation going with him before they met?) Reading this board gives me a reality check when I have too much of a pity party going on re the changes.... I do have a home and health insurance and work, am not in a toxic relationship, had some fun in my younger years (Lupus as an adult only) and am not dealing with the major organ issues so many of you have mentioned.

However, that being said, I'm facing some challenges I'd like to talk about. You guys have been a godsend for me -- somethere to say what I'm really thinking that my family and friends don't really want to hear...

I'm no where near needing to go out on disability, but my muscle pain and fatigue seem to be getting worse, and the brain fog is an ongoing issue, despite the meds. I'm too tired to (with any regularity) participate in volunteer activities or go to the gym -- but need to do something to have more human interaction.

Issue #1 -
I had been really looking forward to selling my house and moving this spring -- but given the market, it looks like I could be stuck here at least another year. I love my house, and my neighborhood -- but not their location... I want to be around people and start building a life. I have a limited one here in MO -- but I don't see the sense in investing much time in something that I perceive to be temporary. Plus St. Louis is so insular -- that's a bit rough. Looking forward to moving was really keeping me going, and I'm a bit depressed.

Issue #2
I thought about getting a pet again, but am concerned that when/if I relocate it will be a problem getting housing and there's also the issue of my travel. Boarding and/or petsitters can get really expensive.

I grew up with dogs and cats, and had cats for many years when I lived in NYC. (Didn't want to subject a dog to spending that much time inside.)
At one point I had three cats simultaneously -- but one died from her diabetes eventually and the other two died several years later but both on the same day. That was a really rough time. They were at different animal hospitals with different specialties -- one cat had had a stroke and the other also died of diabetes. In all three cases, I had to put them down, and the vets had told me it was time. Now that I am watching my money better, I can't afford thousands in medical for them that I spent in the past. Basic expenses -- yes -- but major med no. And I've tried pet insurance, but learned that is wasn't really worth it in payback.

Issue #3
As I've mentioned, I work for a small investment partnership, whose very supportive reaction to my diagnosis pleasantly surprised me. Lately though, that has changed a bit as I don't have "scary" symptoms like organ issues. I did have a good conversation with defacto manager this am that was good and he seemed back to normal. But the overall issues are still there..

A little backstory on the company's culture -- very demanding in terms "constant ongoing improvement" toward higher levels of perfection. Fine in theory, but tough with the inconsistencies of this disease -- e.g. good days vs. bad days. I'd love to tell them about that spoon theory we've all read about.

Recently the office manager complained to me about the vacation I negotiated when hired (4 weeks) -- and I tried not to get defensive, particularly since I work a lot of extra hours and weekends/holidays and even during some of those vacations, as she well knows. She couched it in the form of constructive coaching, but clearly she personally is bothered, based on our discussion of the issue. She also complained about my assorted dr's visits -- even though they are down to maybe one every other week -- soon to be perhaps one a month.

She's overworked, and hasn't gotten to take much of her vacation -- but that is not due to anything I've done -- but rather her role's responsibilities. (The office also handles all aspects of our CEO's personal life as well, a sort of "virtual wife.")

Another colleague (not my manager) has been very snappish and critical than usual -- but he's also going through a rough time -- his mother is terminally ill and I'm trying to take that into consideration.

In both these cases, I am trying to understand where they are coming from and cut them some slack -- but I don't feel like they are affording me the same courtesy.

I was told during my review in December with our CEO that the analysts I worked for were a irritated that I could get defensive about "why" some things they wanted sometimes were not done and that I should not expect to be treated differently. I was told that they don't want explanations. As you all know -- we can't always predict how we are going to be day to day, and it's difficult to outsource in the middle of a project. I've never asked for special treatment -- just understanding of my limitations -- e.g. can't do 80 hour weeks.

A side note -- sometimes the reasons they didn't get what they requested were due to the inavailability of the information, it wasn't always a medical issue -- which they were well aware of, but didn't want to hear. In other cases, I should have outsourced some of my workload, which I am now doing when there is more work than one human can handle well.

The stress is not helping, and the isolation (working at home, no family in town, living alone) just magnifies the situation. However, I don't have the energy for a "normal" job -- and to be honest, this one pays very well and allows me to do that work in a way to work around the fatigue. I do love the work and the people most of the time, but I am concerned and sometimes feel trapped and a bit unfairly beseiged.

I want to stay on the job, not make a change, but I worry that sometime I will just blow up and lose it with them on one of my bad days. Even if they were just being "constructive" and trying to help. Clearly, I can't talk to them about this -- they really don't understand Lupus -- and to be honest -- they are trying to run a business. The company isn't there for my benefit.

I feel really angry sometimes, and being the well-bred lady my mother taught me to be, don't feel enpowered to act on it -- verbally or in terms of actions. So -- I can be somewhat passive aggressive instead sometimes.

Pre-Lupus, training at gym and/or dance studio helped a lot of that, and I will keep trying to do managable things like walking, swimming + water-based exercise classes, Pilates, etc as energy levels allow. And the accupuncture, chiropractor, and meds (Planquenil, Concerta, etc) help some.

Any other thoughts on how I can not let myself become my own worst enemy here? I've majorly downgraded my expectations and dreams for my life. I know I should be grateful for all the good things, and I am -- but just because the Glass is Half Full doesn't mean that I don't want more....

littlered
01-16-2007, 09:38 AM
oh, I wish I knew what to tell you! I totally understand about your life having to change in ways you didn't count on. And work issues are sooo hard, I think, because we tend to make our work so much an identification of WHO WE ARE; it's hard when something like this disease takes control and our bodies just can't do what our minds say we can. Just don't buy into THEIR vision of who you are. I can't believe they had the insensivity to tell you not to expect to be treated "differently." :mad:

People have a hard time understanding Lupus, or maybe they just don't want to. And if we try to make them understand, they will accuse (without saying so) of whining. (I had a principal that told me, "Kathy, we don't want excuses." when I had given explanations. The reality is that we cannot predict what our health is going to be like from one day to the next. It's not like we can "schedule in" a "convenient time" to be sick!
And we have to see our doctor (or doctors) when we damn well have to see them.

I can't prescribe anything, but there are wiser heads here than mine. I do want you to know, I hear you! love, Kathy

MARYCAIN
01-16-2007, 01:19 PM
I can relate to your feelings about living in St.Louis - it's hard to live in a very clannish area when you don't have family to keep you from feeling totally isolated. This part of Kentucky is much the same way, you don't "belong" unless your grand-grandparents lived and died here. It's also hard for a single person in a mid-western area where people expect you to be married and have kids by the time you reach your mid-twenties. I married and had children much later than most of my friends, so I remember the feeling that everyone else belongs to a club you don't have the credentials to join.

I understand that you may be moving, so you don't want to make any permanent commitments. But you can't live your life waiting for something that is "going" to happen, because life happens while you are waiting. And if that something never happens, think about how much of your life is being wasted because you don't want to invest in building a life there. Anna, one thing you do need to understand about lupus - I don't want to scare you but this is the reality of having lupus - just because you don't have "scary" symptoms or organ involvement NOW is not a guarantee that you won't have them next year, next month or even next week. So you have to live each moment in the moment, and get the most out of it. You can't wait for the life you want, you have to go out and live the life you have now. If you weren't planning on moving, what would you be doing differently now? What kind of life do you want to build? If you don't want to get a pet right now - how about being a foster parent for the local animal shelter? No long-term involvement, but lots of love, and the knowledge that you've made a difference in an animal's life. If you have a particular interest - duplicate bridge, music, books, whatever, chances are there's a club or social group somewhere full of people with the same interests. If you don't feel like volunteering on a regular basis, then just do things when you feel up to it. There are many old people in senior citizens' home who would love just to have someone sit and LISTEN to them, you don't have to do anything else but smile, and you can brighten their whole world. Feeling wanted and needed is one of the best cures for loneliness.

I understand what's like to have a high-stress job, and believe me, it can eat you alive before you're thirty. But no matter how interesting a TV character "Carrie Bradshaw" might have been, she's just a tv character, not a role model for your life. And even her life as a TV character was far from enviable - regardless of how successful her TV character may have been, it didn't bring her any happiness in the rest of her life.

If you don't want to change jobs, it is possible to change the job itself? Are there other positions within the same firm where you could work fewer hours, or be under less pressure? As you know from your own experiences, the financial industry is all about the bottom line. And CEOs of investment companies don't get that way by being sensitive, they succeed by having a hide like an elephant and expecting their employees to be the same way. And if this is a small firm, there are often issues of resentment or perceived "special treatment". If those issues aren't addressed openly, they have a tendency to build. So this may be an area where you have to take the lead - ask for time at a staff meeting or a conference to talk to the other staff at the same time. Explain to them a little about what it's like to live with lupus, and how unpredictable it can be in terms of your symptoms and energy level. Explain it in terms they can identify with, like imagine having the worst case of flu you've ever had in your life, but it never goes away, and you have to get on with life in spite of it. Acknowledge that your illness affects the entire firm and that other people are having personal problems in their own life. Tell them how much you enjoy your job, and working with them, and let them know that you are trying to find ways to minimize the impact on your job, and you would appreciate their help and suggestions. Usually this goes a long way toward smoothing over any resentments or problems - and that's a great way to start out a New Year. And making the extra effort to be aware of your co-workers' needs helps too - if you know the office manager is swamped, offer to pick up lunch for her. If the manager's mother is teminally ill, offer to babysit his children or do something extra so he can have more time to spend with her. Things like that strengthen your relationship with them, and help you too.

GlassHalfFull
01-16-2007, 04:49 PM
Lots of good suggestions - thanks. Especially the ones about old folks homes and fostering pets -- although I have to imagine it is tough to let them go later. Maybe a combo could be taking my neighbor's dog (who hovers in the back yard waiting for more rawhide treats from me) as one of those socialization dogs that go around to hospitals and nursing homes. If I could find a no-kill shelter, I'd volunteer there.

My job situation is a wierd one, because I live in MO, the office is NY and the analysts work in various East coast cities. We're like 10 people total. We see each other once every 3 months. No one else from the company is located in the Midwest. I did grow up here, which helps -- but people's activities are still really tied to their families and kids.

I agree re the resentment building potential. I already have proactively volunteered to take various responsibilities off the Office Manager's shoulders. But since I live across the country from everyone -- I can't do the other types of things that require one's physical presence.

Unfortunately -- it's been made clear to me that they really aren't interested in talking more about it. I did exactly what you talked about a few months ago and got nowhere. I even offered to take a pay cut and restructure the job. But since I'm not consistently incapacitated -- they don't want to do that. Any there are whole long stretches where I'm doing well and I agree it doesn't seem necessary. My concern is how to handle the times when I need a day to rest or to not work through the weekend.

I think the best thing to do there is keep my head down, try to keep any time away from my desk asw invisible as possible. We do have a monthly research call where they give me feedback. It's Thursday, so I'm going to try to think about a way to work some of those suggestions in, but not in a way where they would sound like excuses.

I think part of the issue is that, as you alluded, CEOs don't reach their role by being soft touchy feely types. So why should the analysts cut me slack they're not being given, as our CEO commented to me.

I don't know. The mood swings at the company are as unpredictable as my Lupus flares. I need to not dwell on them and let it impact my focus negatively -- it makes me unproductive.

I have pursued interests like jazz and love the concerts I go to. I met some people through volunteering before I got ill -- but they really don't hang out outside the group. And I still have a few HS/college friends here, as well as a few from the prior job that moved me here. But I only see perhaps every months.

Mom's really on my back to join a church, since I was so active as a kid and in leadership roles in HS & college, and a YoungLife leader after graduation. But as an adult, say mid 20s on, I've found much of organized religion a bit too judgemental. The American Baptist church I grew up in (very different today though) had the beautitudes on the windows, illustrating the values I was raised with. It was much more like the UCC denomination. Perhaps I'll check out some local UCC congregations. Who knows.

I do know that the Lupus can get worse -- I like to think I'm prepared for the "scary" symptoms -- but right now I guess I'm just getting used to the basics of the disease -- and learning to strike the right balance of acceptance, ala the Serenity Prayer.

I didn't mean that I wanted to emulate a character. Sorry if I confused things. I was trying to say that my life in NYC was really based around a community of friends who were a surrogate family of sorts - and due to the small size of housing -- our interactions usually took place in public venues. Yes there were lots of parties -- and other fun -- no illegal substances though, at least not on my part. I was having fun, and enjoying vitality. I guess part of that would have gone away with age, regardless of the Lupus.... I never expected to feel this old at 43 though.

If I wasn't moving what would I be doing, too depressing a thought to really contemplate... It's exactly trying to puzzle that out that got me so upset initially.

MARYCAIN
01-16-2007, 05:52 PM
I completely understand the "weirdness" of your job situation - I work in a satellite office of a mega-firm - there are a couple of hundred partners and I'm in a non-partnership managerial position, although I do have a few clients of my own, so I'm definitely low on the totem pole. But a partnership track position involves billing at least 2400 hours a year, which means working 50+ hours a week, 52 weeks a year, not to mention coming up with a couple hundred thousand dollars to buy into the practice. We have people scattered over three continents, so I know what you mean about not being close enough to do the personal stuff. Unfortunately, the real downside to a small firm is that you have very few legal protections in the event of a disability, since neither the Americans with Disabilities Act nor the Family and Medical Leave Act would apply to a ten person firm. Your employers can choose to provide you with work accomodations or medical leave, but they would not be obligated to under federal law. You might have some protections under state law, but they can vary widely from state to state.

Is it absolutely essential that you sell your home before you can move back to NYC? Is renting it, or selling it to a real estate brokerage firm an option? You might even be able to work out a "home trade" for a year with someone in New York.

Are your skills something that would transfer easily to a different position if you decided to change, maybe to a bank or a management company, or even a private foundation that manages its own investments? I know you don't want to make a change right now, but sometimes just knowing you have other options if things get unbearable can take some of the pressure off.

If you are interested in jazz, why not audit a music course, or learn an instrument? I'm sure there are places you could do that. Or find out if your local symphony, orchestra, whatever, needs volunteers to work as ushers - the Fine Arts Center near where I live is always looking for volunteers, and you get to go to the performances free, which is a nice perk since tickets have gotten so expensive. Like you, I've been turned off a bit by organized religion, but I've always found both the Unitarian and the United Methodist congregations to be very warm and welcoming.

browneyedgirl53
01-16-2007, 08:30 PM
Hi Glass Halffull,

This is hands down the GREATEST SUPPORT SITE - especially in regards to support for those of us who have had to learn that defining normal - is an everyday event. It was such a long and lonely struggle to accept this disease, and I personally, felt a deep need to be able to communicate with a much larger community of sisters and brothers who have walked this lupus road before me. There have been so many times when I too, was frustrated, confused, scared, I just didn't feel right in the world. We are a very special group of people, we learn that normal isn't what you look like - it isn't how fast you can do something ; it's a normal that many others will never understand. Not because they don't want to.....they don't know how; and not because of their lacking...I don't know what it's like for a parajumper to jump from thousands of feet in the air....but that's how I compare every morning when I wake up. I'm traveling in this jumbo jet of life, the hatch has opened (new day), I check my chute (meds,diet,meditation); put on my helmet (courage, and lots of patience); I pull the ripcord (determination, attitude, acceptance) and once I've placed my feet on the floor and soar through the day.....I'm free falling from minute to minute....and my soft landing at the end of the day comes when I am home; playing my favorite music, doing some stretches, meditate......check in with friends and family via phone or make arrangements for visit.

And my tub is my best soothing source to find my time to take care of me, soak my worries away.....and when I pull the drain; so do the worries of my day go....right down the drain; and then God and I have our fireside chats together; there is nothing better when you know whose you are and that He hears your every prayer; knowing that when He makes a promise - he keeps his promises. When God talked to Jeremiah, when Jeremiah was just feeling absolutely hopeless, confused, and wasn't sure what to do with his life.....God spoke to him and said: "For I know the plans I have for you, plans to prosper you and not to harm you; plans to give you HOPE and a FUTURE; and when you search for me, you will find me....and I will give you peace".

I have discovered that through our times of trial that we are confronted with decisions we wish we would never have to make; or make changes we don't want to do.....but I tell you this my friend, take heart; you have a WORLD of friends here that are willing to stand with you when you're not feeling strong; and the Dallas Cowboy Cheerleaders have nothin' over this group....hands down, you know you have the brightest, the best and the most encouraging group of friends here. So keep sharing, keep hopeful, keep in touch.....and there will come a time when a new person comes on board; and you'll be able to share your learned wisdom with them.

If I could share with you my thoughts about work; it would be this: most people can't understand what they can't see....they can't feel compassion if they've never been hurt enough; they can't extend a hand...if they've never had someone reach out to them. I choose compassion for those people. I completely understand your frustrations about work; it is aggravating at best. BUT DON'T LET IT CONSUME YOUR LIFE !!! There is too much living to do, to allow this group of folks to invade your time like this. Turn off...the work button when you walk out of that door. I promise you this, at the end of the day....IT IS ALL ABOUT YOU, protecting you - protecting your heart and body...and last but not least you mind. I have learned so many wonderful and valuable life lessons from so many people on this sight. It has helped me tremendously to know that what I suffer physically, spiritually, emotionally....can all be shared through this community of sisters and brothers; a burden I gladly lay down because it can become too much to bear alone. So take heart my friend, take time to take care of you - that's most important !!!!

You have earned the right to define what YOUR NORMAL is....not anyone else. If you have to take different measures to achieve a goal expected of you....so be it; as long as you find a way that works for you. "I now have to carry a steno notepad everywhere I go - .....I just introduce my friends to my new brain....people will respect you more for what you are doing for yourself....and doing it with grace enough that they will never know the challenge it took for you to be in "that place of peace". Stand assured, that the measure of a human being is much more than that measured on a time clock at work. Let work, be a part of your life....just a part; allow yourself time for the simple joys in life. There are many to be found.

Stay encouraged, be hopeful and have faith that tomorrow is a new beginning....yesterday is done. So soak your worries away, and we'll talk another day.

Much love,
Browneyedgirl

GlassHalfFull
01-17-2007, 04:48 AM
Tub time is the best -- I'm a Taurus, and love my create comforts. Nothing beats a good soak!

browneyedgirl53
01-17-2007, 06:59 PM
Hello Friend (Glasshalfful)

I hope you're feeling better today. You've been on my mind and in my heart most of the day today, my prayers and well wishes are for you.

Take care friend, we love you and know that you are so important to us all. Keep sharing, keep caring....and let your own light shine !!

Much love,
Browneyedgirl

mnjodette
01-17-2007, 08:25 PM
GlassHalfFull, you're facing much of what we all face, I suspect. The realization that your life is no longer what you had expected it to be...and the need to accept what that life has 'morphed' into. And, to make matters worse, lupus is a moving target...you never know what new surprises might be in store for you. This is hard stuff! No doubt about it. You deserve some recognition of the struggle you are facing, but you may not get that recognition from your employer. You may have to make your peace with that one, and instead move on to things over which you have some control. You've received some really wonderful advice from others on this forum, so I won't try to 'gild the lily' (as my grandmother used to say.) Just know that we're here to listen and provide you support whenever you need it. I wish we could be there (physically) for you - to hang out and keep you company! But, this is the next best thing, right? We're just a click away, and ready to offer wisdom (of some sort!) or at least a cyber-hug and prayers. Hang in there.

Jody

GlassHalfFull
01-18-2007, 07:20 AM
Thanks all.

I have OK days and bad days. I don't know how I would have gotten through the rough days without all of you all and this forum.

I'm relatively new to the diagnosis, although I've suffered for over 10 years. It's finding that balance of accepting what is not changable (and the difficulty of understanding that) vs. when to make yourself get off your <censored> and get out and about.

This forum has really helped. Hopefully someday soon here I can be a little more settled so I can be more of a "support giver" than "taker" -- I'm not really used to being the one taking....

Today is OK. It's thinking about the long term that gets me upset at times. Second guessing choices I've made in past etc...

littlered
01-18-2007, 01:22 PM
I felt that way, too, at first...like I was always "taking" from the forum rather than "giving." But I found that posting your experiences, your emotions, asking advice or help...well, it helps more than just ME. Just as I have been helped by reading other people's posts, your posts just might hit the nail on what someone else is going through. And so, they learn that they're not the only one who feels that way, and they read the very wise advice given by others...and they learn, too.
It's one of the things I love most about this board...so open, so creative, and so understanding!