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Lupus is in my way.

379 Views 10 Replies 10 Participants Last post by  helloos
My title says it all. Lupus is in my way. For anything I do.

If there is anyone who understands what Lupus does to you, physically and mentally, is you. I have no where else to vent, address my conerns or go to someone who understands what I am talking about, so a big thank you to all for allowing me to do it here and for the time each and every one of you contribute here.

Work. Yes I was laid off for 11 years. No severence, no warning, just time to close business. So this was Thursday. Friday I had an interview, went very well, but more hours. I work mon-thurs 9-5 now. This new job is mon-fri 9-5. So an extra whole day. usually my Friday is for doctors appointments which makes your work schedule a little less stressful trying to make your appointments and not get your boss mad.

My concerns. This position is a more stressful position. Not that I cannot handle the job, I can. But what comes in my way is Lupus. Lupus this and Lupus that. Florescent lights in the office. Can't say can you replace lights at an interview. Can't even say that for a bit of time until you prove yourself. I am so worried about being under more stress and longer hours. There is no guarantee that I will leave at 5 every day. It is the business. Boss says he tries to get you out, but there might be some days, during busy times, when you might not leave. Busy times can be anytime and last for months, given the market.

Florescent lights will make my symptoms worse, brain fog, redness, fever, you name it. Even with clothing and sunscreen, it still happens.

Longer hours with a more stressful job, I am afraid that everything will get worse. Then what?

I hate Lupus. I hate everything it brings to myself, my being, my life.

If Lupus was not present. I would not hesitate. I am a go getter. I can work, handle stress, longer hours not an issue. I am good at my job. No light issue. That was me - prior Lupus.

The now me, I hate. I am stressing about this really bad. I will know next week if they want me to come in for a second interview. I know I did really well and was impressive. Sure they will call me back.

But what I can't seem to stop is the worrying. What if I take and everything gets so much worse. What if I don't take, and nothing else comes up. What if I try it for a while and if stressful and symptoms worse, look for another job. Todays market, no guarantee there and things get really bad, quit? Can't do that. No unemployment if you quit.

So I wish I could have my mind stop. But I can't. A part of me wants to say IGNORE LUPUS. Go for the job, don't think about it. But I know what the end results can be. I am not feeling at my best either right now and yes, due to stress of this and my son.

I am really upset and crying about this. I just don't know what to do and I don't like Lupus getting in my way about my career. As agreed, I hate Lupus.

Sorry for the rant, but really really needed to get this off my shoulder to those who will say I know exactly what you are saying.
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Hi Paula

I am sure glad you can rant in here and yes we do understand very much so.I was there where you are right now likw 5 years ago.I was working as a janitor full time at a local grade school.I love the people but did not even like my job at all after awhile anyway.I to did have trouble with the lights and with the sjogrens.I do not work at all anymore and i am on ssdi.

Everything withn your son probably does not help with the stress at all((((((hugs)))))))).You do need to think of yourself and your healthas hard as it may be to say no to this job.Everywhere i go seems to have the lightbulbs that cause me to get the butterfly rash on mt face and my neck also.That is so uncomfortable when it happens also.I really hope and pray things turn around with your health and your stress.I sure hope it helped you to come in here to vent.i have nobody really anymore to vent to either except my hubby and sometimes i think he is tired of eharing it even if he does not say so.Try to get the chance to relax paula even if it is just taking a very hot bath or something.Take care or try to anyway(((((hugs))))).

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Hi Paula and ((((((((hugs)))))))) to you,

I think we all understand those feelings. It's hard to know what to say to you really other than send you our best wishes and keep our fingers crossed that things go well for you in your new job.

Like you, I used to be very pro-active and used to think that anything was possible if I wanted to do it. I still feel that way but unfortunately only on very rare "good" days. I then feel like I could take on anything. Of course, by the next day, I feel I have been shot down in flames and reality comes back with a bang.

It is frustrating, incredibly so... It doesn't rule my life as thankfully I can orient my interests and goals to other things but still, I think we all understand.

Hi Paula

Yep. I completely get what you are saying. Its obviously worse when we have 'down' days and you are are having your unfair share of them lately:sad:

I also find that whatever decisions I make, the first thing that pops up in my mind is my health and the impact of the decision on it. It gets very wearing at times and I long for the freedom of simply saying yes or no based on a whim :rolleyes:

I cant help you with your decision. Its a very tough one. I know that I couldnt work under fluorescent lights all day long. I dont think I would even last a day :sad: I also know that going back to working five days a week would be very difficult for me especially with the amount of hospital appointments which I also schedule for my days off.

I understand where you are coming from - I just dont have any simple answers.

Much love and strength
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((((((( Paula )))))) I feel certain that others will post good advice and ways to mitigate your situation at work. I am only going to tell you that I understand exactly what you're saying. I also hate the now me. I hate lupus. And I would never deny your right to feel the same. Some times are harder than others. Clearly you're in a hard time now. I think it's when we're faced with a situation that we KNOW would have been good and positive and easy for the old us. And there staring us in the face in the mirror is the now us. Slow, painful, doctor appts., emotional, brain-fogged, you name it.

But believe me when I tell you this: you are still the person you've always been. And your life has as much value as ever, maybe more because you've acquired patience and wisdom through this stupid illness. The ability to "work" for money does not define or limit your worth. You are a beautiful and caring woman. Those who share your life are fortunate. So please, don't let your decisions about this offer be weighted by anything other than your own best interests. The universe already knows how important you are.

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Lupus is a rubbish disease!!! :tantrum:

No need to applogise for your rant you are re-itterating many of my thoughts and if you cant rant about how rubbish life with Lupus is here where could you. I would love to curl up under a duvet and hide from life with Lupus. Although recently I just wish I had know how lucky I was before I got it. To walk into town now without having to stop to catch my breath or sit because of the pain would be a dream. I used to walk for miles as a kid and not even think about it. To go out of town without taking a spare bags for tablets and being able to give you a run down of a number of UK hospitals would be something unimaginable now!

Saying that, you do need money coming in...
If you are a list type of girl you could create a pros and cons list of the job...
Cons - Working an extra day will mean you need to make the rest time up at another time - E.g less family/social time, lighting problems will lead to worse symptoms.
Pro's - Having a job will mean having a reliable income, meeting with people at work will enable you to feel 'normal' for a while etc.

Looking for jobs with the economy as it is is v stressful but if you just jump at the first job that comes along it might not be the right job for you and the perfect job might be just around the corner.

I hope what ever your decision you feel peace about it.
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Oh yeah.
Lupus is a two-edged sword for me: 1) It forced my early retirement (a very good thing as it turned out); but 2) It is stealing my retirement, or at least, the enjoyment thereof.
For example, I have no pain this morning but I also have all the energy of a wet dishrag. When I could be out walking the very thought of it makes me more tired.
So cheer up, Helloos. Lupus can screwup your working life and then steal your retirement.
[Having written such a downer of a sentence I, paradoxically, find my mood lifting as I laugh at my own self-pity party. Depsite all this, life is good! And Lupus sucks!]
((((((((Oh paula))))))))

This is such a hard decision to make.
A while ago I was on a fantastic course which, when compleated, would have allowed me to get a dream job. After much struggling I chose to drop out of it as I wasn't feeling well at all. I was compleatly gutted at the time but in hind sight I can say I did the best thing for myself as I wouldn't have coped with the course along with everything else I have had to cope with in the last few months.
The thing I find hardest to cope with is the fact that I never know how I am going to feel tomorrow, next week, next month... It makes its so hard to plan anything, and I am forever breaking appointments, promises to meet up with friends, school pta meetings ect.
lupus is such a hard and cruel disease and i hate the way it rules my life.
All I can say is do what is best for you, and please don't ever forget that whatever your decision you are a wonderful person who has coped so well with so much.

whatever you decide please take care of yourself.

many hugs

Elle x
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I am so sorry that you are so stressed right now. I know that it is really hard not to worry about things. I do it to myself all the time. There is a lady at my work who brought in her own floor lamp so that she doesn't use the florescent lights, would that be an option for you? You can just tell them that the lights bother your eyes or something, they don't need to know your situation. I do agree that working an extra day will be an adjustment. It is hard to say what to do, but you just need to decide what feels right to you, go with your gut. My gut is on target 99% of the time. I wish you good luck with your decisions.

Am so sorry Helloo's to hear your problem with working or not?
When i was well i was working 9 jobs and was always on the go all day, and in the evenings to.
When i got really ill and thought i had flu, i was in bed nearly 3 weeks before i went into hospital, although i don't remember much about going in, i was in there 6 weeks bfore they told me the crushing news that i had Lupus.
I was only 42 and full of life, and loved my work and the people i worked for, but i had to give it all up as my body just will not let me do anything much now, let alone run 9 people's houses lol!
It's only you that can make the decition about work, it's one or the other, or you could try part time maybe?
My heart goes out to you, and i hope that you make the right choice :)
Let us know how you get on ok?
love to you all
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Thank you so much for taking the time to tell me your stories and such. You are all so very helpful.

After stressing, and I do mean totally stressing about this, I went for a second interview, and only 5 out of 60 were called back. We were all extremeley qualified, they said difficult decision, they needed like 3 days to decide, and I did not get it.

I can only say I prayed to God to give me my answer and if things would get worse for me there, then don't let me get it. I take that as a sign. I do beleive it would be too much for me. But I think I would have grabbed it, given the market out there. So many out of jobs, so many experienced people looking and not many jobs there.

I have spent the weekend at a wake and funeral, very long days, to add the stress of the job onto that. The last few days I have spent in bed with high fever, swelling, you know the rest.

So I am feeling a bit better today. So I wanted to come on and do some catching up with you all.

But now I am tired again, so getting off. But thank you for allowing me to vent my concerns. I will start my search again next week.

Wishing you all well.
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