The Lupus Forum banner

1 - 18 of 18 Posts

·
Registered
Joined
·
1,101 Posts
Discussion Starter · #1 ·
How can anyone with SLE manage to work? (That I did for a lot of years is irrelevant.) How can anyone live with a Lupie? How can anyone with Lupus live with him- or herself? I am fit to chew roofing nails; today has been just plain wierd!
I woke up this morning feeling fine. Kathryn and I went for a walk, I looking swish with one of my elegant walking sticks. And then the world turned downside up. I made it home, straight to bed. About two in the afternoon I felt almost fine. Root watered the tree, took the bags off the motorcycle, rode the bike to the car wash and home again. I had to rest between each activity but managed to do it all, just like a real human being.
To sum up: SLE (and probably every other autoimmune disease) is rotten in itself but what makes it even worse is that one cannot make plans because one does not know from one moment to the next whether one will feel human or like something scraped off a pig farmer's boot. So I ask again:
How can anyone with SLE manage to work? How can anyone live with a Lupie? How can anyone with Lupus live with him- or herself?
Here endeth the tantrum.
Happy Canada Day!
 

·
Registered
Joined
·
4,444 Posts
It's tough. I now wonder how I managed to work for as long as I did after my diagnosis!

But I think that we epitomize "living in the moment" which is typically thought of as a very good thing ;) People can live with us because we usually develop unique sense of humours (especially you I've noticed!) which they appreciate and we do have our good moments :)
 

·
Moderator
Joined
·
11,409 Posts
How can anyone live with a lupie? It takes a very special person who has tons of patience, who looks at us and sees a person, not a person with lupus, one that understands that we will have our good and bad days.

As far as living with ourselves. I think we are our worse critics.;) We see what we have turned into, living with lupus. This roller coaster ride of emotions we have with this chronic illness,is a very hard ride. We long for what we were before getting this diagnoses. We need to learn to be easier on ourselves.

I have always said we who are living with lupus are one tough, strong person. How else could anyone live with lupus? If not strong and have a fighting attitude.

As far as working... I am in awe of anyone who can work and deal with lupus in their life.

Take care of yourself Douglas.

Lyn
 

·
Registered
Joined
·
631 Posts
Hi Douglas,

I share your frustration!! I think that this must be the hardest part of the disease to deal with, it is impossible to look forward to a activity when you have no idea if you will actually be able to do it.
I agree with the others about the sense of humor and the fighter attitudethis site is certainly proof of that.

Happy belated Canada day to you and all other Canadians. My daughter is a duel citizan and was most annoyed when she found out she had to go to school yesterday when her canadian friends and family all got the day off. :lol:

Hugs
Elle x
 

·
Registered
Joined
·
216 Posts
Hi Douglas - Im just planning to go back to work so your post is VERY timely. Im having an interview with my HR dept next week I hope. I intend to tell them how it is almost exactly as you have described! This disease is so unpredictable. At 46 I want to work, I like my job but OMG Im not sure if I can do it? I fel Ok today but who knows about tomorrow!:hehe:

I love your posts you always manage to cheer me up even though I suspect your feeling awful too! :)
K
 

·
Registered
Joined
·
6,152 Posts
How can anyone with SLE manage to work?
Hi Douglas

Sorry you had such a rough day :hugbetter: I cant answer your question because I might just end up crying.... Sometimes I just dont know how I manage it all. :worried: It just seems like everyday is a battle to get by....

Much love and strength to you.

Joan:rose:
 

·
Registered
Joined
·
217 Posts
What keeps me working? My relatively stress-free job (not sure I could cope with anything busier), and the thought of awful daytime tv... ;)

Take care, hope your day improves :hehe:
 

·
Registered
Joined
·
7,800 Posts
Sorry it's one of those Grrrrrrrrrrrr, arrrrrrrrrrrrrgh, pfffffffffffffffffft days....

How can anyone with SLE manage to work?
Me thinks I shall be making a copy of your post and showing it to the stupid health benefits doc that thinks that because I am "stable" (rheumy's report, she means my bloods are not doing nasty things) I can go back to a 40 hour week even though I have now been off work for two years (having worked through a year of totally impossibility after my remission)!!!

As to living with me, well that's easy... I'm adorable didn't you know :rotfl:

Katharine
 

·
Registered
Joined
·
1,835 Posts
Douglas:

I can't answer your questions, not a one of them...

I don't know how my husband lives with me...I am either a whirlwind trying to get everything done when I feel OK...or I am a whiny lump of jello who did too much and can't move off the couch.

I don't know how I live with myself, I see a person who has lost her self confidence and sense of adventure, with no idea what tomorrow will bring and worries about it all the time.

I don't know how I would be able to work, or who would want to hire me as I cannot remember things and words, couldn't be consistent in work effort, and has lost all sympathy for common human failings.

I just know that when I have a good day I do all I can to make things right without pushing myself so the good days can last a little longer, and on the bad days I keep to myself as much as possible so I don't inflict my self loathing on others. Work is a thing of the past, and I am grateful we saved when I was working to it's not a financial burden that I don't work (disability has helped with the self esteem issues a bit as I feel like I am contributing in some meaningful way).

I think all we can do is live each day to the fullest and be grateful that we are still here, even if some days its on autopilot.

Stephanie
 

·
Registered
Joined
·
4,968 Posts
Thank God my husband is understanding, compassionate and loves me or I do not think our marriage would have stood the test of my crazy illness roller coaster ride, in and out of hospitals, good days where I am setting the world on fire and bad days................THAT ARE JUST HORRIBLE!!!

I am not one to complain and never have been since I was a child. My mom always knew when I was sick because I would just disappear and go to bed or while I was awake I became very quite, normally I am chatty matty.:lol::lol::lol:

I am still the same way today as a adult. I don't talk much and just go find my bed. For me I would rather wallow in my own misery then share it with my husband. Last month I took myself to the Emergency Room after he left for work and spent the day there by myself. He did not even know how bad I was that morning before he left out my front door.

Guess I have always been fiercely independent most of my life and some things just never change.:rolleyes::rolleyes::rolleyes:

I really miss working and if I think too much about how my life used to be it will put me into a emotional tailspin. I don't know how folks work but I am in awe of them if they can. I really hate being chronically ill and how it effects everyone in my life, one way or another.:mad::mad::mad:
 

·
Registered
Joined
·
59 Posts
I force myself to go to work everyday. If I did not I would not have health insurance and not be able to get medical treatment. My lupus is getting worse so I do not know how much longer I will be able to work. My employer is very understanding of my illness and I can take whatever time I need to go to drs or just to rest. I am so thankful for my husband because he cooks and cleans so when I get home from work I can just crash. He does say I have roid rage because I get so mean sometimes and my mood swings are off the chart.
 

·
Registered
Joined
·
87 Posts
I also force myself to go to work everyday. I think it keeps me sane and fortunately I do not have an overly stressful job. I do, however, feel like it takes away from my kids. I am so tired when I get home that all I seem to do is veg out on the couch. My poor kids, they say I don't laugh anymore, that I don't play anymore that I sleep all the time....there is defeninately trade offs to working. :hehe:
 

·
Registered
Joined
·
457 Posts
Thank you for sharing the tantrum-:( reminds me i am not alone in my feelings:)and that means of a lot:)

Rachel
 

·
Registered
Joined
·
20 Posts
hi everyone. i manage to get to work most days but know some days my colleagues are carrying me. i am so lucky that they help out. i work in a school and used to look after all the sick kids as part of my job but due to neutropenia I now cant do that incase i pick something up so they have taken that part of my job on for me.. without being asked and with no reward for themselves. Some days I am soooooo tired at the end of work I have concidered sleepin there instead of the effort of gettin home to bed! Friends and family are very understanding and caring and will do anything to help that they can. So if everyone is being so good why is it so difficult having lupus and all its glorious facets? Because i havent come to terms with it myself yet and until i do it will always be a struggle i think. Heres hoping that all us loopies remember the main thing....to remember to love ourselves however we are and cut ourselves some slack. Simple answer to how people can put up with us? They must love us. Thank God.
 

·
Registered
Joined
·
1,289 Posts
After being made redundant in March I am not well enough to go back to work. I have worked since I was 16, now 37 and have good skills.

How my husband lives with me, I don't know - how I live with myself is a question I can't answer :tears:
 

·
Registered
Joined
·
995 Posts
Douglas you express what most of us feel.

I am not able to work for the last five years. when they ask me why I can't , my statement is the same all the time. It is a full time job taking care of myself. and then I still need help
as for others living with me
they don't. even my own dog likes to stay at my friends more then here
I used to say I would have to wait till the morning of an event before I could decide to go. now I decide just before leaving
and depending on the day wether I stay or not

nobody but another person with lupus understands. and that is to say we even understand ourselfs

lots of hugs for you
goats.
guess I am a bit annoyed with myself lately. that I can't do what I want. but then I would be healthy, If I could and wouldn't get to know all the nice people on here
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
The simple answer for most is there are no other choices but to do. You don't get to choose who you fall in love with and that is for sickness or health (or it use to be back in the day). It is like most thing you run on empty most of the time. Most of us never thought we would survive our children, but here we are stand (well sitting) and lupus is like a child life long care.

I personally try to focus on the good things, like the day that I can clean my small apartment, work, and pick up things for a late dinner. It nice when the end of the day comes and you get to fall fast asleep for a few hours with the help of the meds. I wear my flightiness very proudly. I got it by being one of those if I feel well enough today I will.
 
1 - 18 of 18 Posts
Top