[debatat]

Hi

I am feeling sad as today I had to tell my course tutor I can no longer carry on with my course. My doc was furious I had even tried to go to college as he says I know I am not fit for work. I hadnt told him but my hubby phoned him to tell him why I was so ill. Then followed more talk of me not accepting how ill I am.

Somedays I feel as though I am swallowed up by illness and that it rules my life. Then I read others posts and they seem to be so much sicker than I am and they are working full time and have familes and I wish I could do that. :worried:

However I know it was the right decsion to give up course as it was making me so tired that I went into a flare. Then I got stressed and anxious as I felt I couldnt keep up with what I should be, then I flared more. And on it went.:sad:

I have my family to think of and it wasnt fair on them, as they have to do everything when I am ill. I think this flare really frightened them.

Sorry to moan again. You must all be sick of me and I have only been here a short time.

Its just I know you all know how I feel. ( I hope!! and that you are not thinking lazy madam!!):worried::worried:

Deb

 

[granny weatherwax]

((((Deb))))

Don't apologise for having a "moan" that is what this site is for to talk about your lupus and how it affects you with others who know how it is. It must have been a very difficult decision for you to give up your course, but maybe when you are feeling better you may be able to start again. The important thing is for you to get yourself well again and to feel better in yourself. I am sure you will get lots of support at home and here on the message boards.

I am sorry you are feeling so low at the moment. I have had to reduce my hours at work, it's been almost a year now after I fell apart in the doctors surgery and she told me I had to slow down. I was working in excess of 45 hours a week and rarely getting a lunch break. I was getting more and more stressed about things and just couldn't cope with work, my home and everything.

I have gone through a range of emotions, felt like a failure, very guilty and maybe that I was being lazy, but my husband has been so supportive and and made me believe that I am not being lazy or a failure. In fact the other week his back was rather painful and out of the blue he said "I can now understand how you feel sometimes it's no fun being in pain for a long period of time". So now he understands why I give in now and take drugs :lol:.

Take care of yourself and make sure you rest up. I am sure you will be able to start your course again when you are feeling better. Keep smiling

Claire xxx

 

[LolaLola]

Debs, two years running my Daughter has started a College course only to have to abandon it due to Lupus. She and I both know how you feel.
I do not work, I am on permanent Disability and honestly think I am very fortunate to have it when I see the struggles some of us here have trying to bring money in. I have not worked now for some years. In the end I downsized my work more and more but still used to have to let people down all the time.
When the children were growing up they were my priority and still are. There are many things I don't have the energy for, especially Housework, can't Hoover, can only stand at cooker in short bursts, can't carry stuff. It is just the way it is. Best not to compare yourself with other people, this illness is so variable. Also you will not be able to come to an acceptance all at once, some aspects you may have to chew over time and again. I found help from other Lupus patients on the Internet, many have become close friends of mine and I used to be able to travel to see them. There really are some things you need a fellow Lupie for.
x Lola

 

[confused1]

It's not easy giving up the picture we carry of ourselves. Even after six years I haven't given up the fight. I still struggle along, honestly believing that someday I'll "get my life back." Ok, maybe I don't really believe that, but it's important to me that I keep hope. Still reality is just that -- reality. You can't really scoff at it and tell it to go somewhere and change. So some acceptance is probably necessary to keep from going insane.

Please don't worry that we'll ever think you're lazy. Nobody on this list would ever cast that aspersion on another sister or brother. We know. We all carry a heavy piece of the same load. I'm sorry you couldn't keep up with your college class. Is there a way to take one class at a time online just to keep your mind sharp? I took up a brand new hobby a good couple years after I fell sick. It's saved my mind and my life even a couple times. We need passion in our lives to keep us going.

Listen to your doctor, but see if you can't find something to interest you that doesn't hurt. And don't worry about what anyone thinks. You are loved by your family and that's what's most important.

Hugs,
Sunny

 

[lazylegs]

Hi Deb,

You are not a lazy madam, you are just taking care of yourself. Continuing like you were you would never go into remission. In the long run you will see this is the right decision.

It is difficult to give up your goal. Now you have to be realistic and set up a different type of goal to achieve. There are so many things to experience you will find your list will be endless.

:hug:
Lazylegs

 

[lin]

((((Debs))))) life isnt fair hun, but you put your self first, i never wanted to finish my part time job as a care assistance, but i couldnt carry on, i think i did well doing 17yrs of it, i loved it and now doing nothing. :sad:

i know it will change at some point when i m not sure but we all have to live in hope, but deb you take care of you lovey, and your not a whinger moaner, you have fiven it your best, now have a little rest, like you me we will find something to do instead off just got rest till me find


thinking of you lin xxxxx

 

[Katharine]

Hi Debs and hugs :hug:

I think we all understand where you're coming from on that one. Also, I think that going through that intense sadness is all part of the process really, a process of acceptance of a different way of life for some of us.

I know full well that I am not as ill as many here but although I am great at a kind of optimistic, head-in-the-sand denial, I also know that things go pear shaped the minute I do even a tiny bit more than I do now (for example recent events pushed me into a sudden and rather bad flare). I know and have been told that I have to be careful. I know that if I were to try and struggle on working as I did before, I would then join those that are very ill - I mean heck, even the health insurance doc doesn't want me working (and they're paying me not to). Her arm had to be severely twisted to allow me a maximum of 14 hours a week on condition it remained "sedentary" (her words not mine).

I try not to look back. If I did, it would probably make me severely depressed as I used to be a very different and very active person. However, if I look back to when I was working, it wasn't a life. It was sheer torture and life had been resumed to work and trying to sleep enough to struggle through work. I found myself counting the minutes of every day wishing I could just go to bed. I fell asleep on my desk several times and then suddenly had to wake up and be bright and cheerful and teach people to speak English.

I am now far more relaxed. I do things I want to do, like come here, keep in touch with friends, walk my dog as far as I can, take photos when I feel up to it and I work a little. I know the little will never become a lot but I like the little. I am a far better wife and mother. Me not working has meant that my husband has far more stress on him to make ends meet but he is delighted to come home to a human being, someone who has a smile and has time to talk. I don't feel supported. I know I support him too by being there, by encouraging, giving ideas etc.

You may not be able to do the same sort of thing again but you may find something else some day. Perhaps you'll find a less demanding course by correspondance or your life will take another direction.

Try and enjoy today and each day as it comes, who knows what the future will bring.

love and hugs,
Katharine

 

[debatat]

Thank you all so much for your kind words. This site has very quickly become my lifeline and I am finding it easier to adjust with all of your support. It is such a big change for me to adjust to being the one looked after instead of doing the looking after.

I am hoping that one day when I am on adequate treatment that things may be different. Until then I am just muddling on trying to do my best.

With all of your replies I am actually feeling grateful for things today and I am sure that my family will be pleased about that!!!

Sending warm cyber hugs to you all

Deb

 

[Lis]

Hi Deb
Just sending you a few hugs ((((((((((((((hugs - feel better soon)))))))))))

Lis

 

[Douglas]

Unfortunately I know just what you mean. In the past few years I have watched a lot of things disappear out of my life. It is difficult to watch plans evaporate and life change.
Like you I read of so many on this forum who are so much more ill than I and yet are able to hold down jobs, pursue careers, take what sound like exhausting vacations, etc.
Lupus is no respecter of persons and varies so much from person to person that it should be obvious that comparisons are not really possible, yet I keep making them.
I hope and pray that you will be feeling better soon.
Douglas+

 

[macfamily53]

Hi Deb

I am so sorry that you are feeling so unwell(((hugs)).I cant even imagine dealing with lupus and going to school,but i understand what you are saying also.I sued to work 40 hour week as a janitor and had to quit because of the major flare i was going through.I felt like i was being lazy also but i realzie now that lupus litterally kicks our bottom:hehe:.It sounds like you really need to focus on feeling better for now and then if you can get the lupus under control you could always go back to school but otheriwse your health is much more important for sure.Everyone in here knows exactly knows how you are feeling and know you are far from lazy.The sight is here to support you and i am so glad it is here for all of us wether it be to answer questions for us or to vent to.Take care of yourself.

Tammy