Lupus is in my way.

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))))).

Tammy

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

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
Joan:rose:

((((((( 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.

Hugs,
Sunny

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.
K

((((((((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

working?

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
Debbi
xoxxoxoxoxo

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.