[mississippi girl]

How do you give up a job you love, taking care of your family and all of the normal things in life to a disease from Hades? I have tried to hold on to my normal life for as long as I could now it is getting to the point that I have to get someone to drive me to work because the brain fog is so so bad. I am pretty much useless most of the time I am at work and my family is wanting me to take my short term disabilty. I am tired of fighting to hold on to my job and the normal things in life. How do you let go and give in to the disease? I am a very independent person and do not want to have to depend on anyone. I hate making these sacrafices to this disease. It feels like it is killing my independence. If it was not for my two kids needing me I would probably not have given up driving. My family knows that laying a guilt trip on me about my kids is the one thing they can use to make me do what they want. Any advice on how to deal with this would be great.

 

[Katharine]

Hello

It is very hard to know what decision to make in such circumstances especially when you are relatively early on treatment wise which I believe is your case. The thing is it can get a whole lot better when treatment is tuned but the problem is that may take some time.

I became very ill about 2 1/2 years ago and had to give up my job "temporarily". Unfortunately for me I haven't got back but, on the up side, giving up that job did give me back a life to a great extent as I was able to find a rhythm that suits me and now enjoy my family rather than being exhausted by them. Don't get me wrong, I'm really not "stay-at-home Mum" material. I too am very independent but I have learnt to keep busy in other ways and have gone back to some things that I didn't have time for like, for example, photography.

I have had quite a few mobility issues at times and sometimes haven't been able to drive but things are "stable" for the moment and I can do an hour's drive at most so that's fine for most things.

I think what I'm trying to say is that even when it takes a long time, as it has for me, things can stabilise and get a lot better than they are today. Also, for the things that don't we can adapt. That's not always easy to do and sometimes requires a whole heap of mental adjustment but it can be done.

Don't give up hope. As for what you need to do now, I think it's a question of knowing whether you can afford (financially) to stop work and whether if you don't it is worth the price you may pay health-wise. Work uses up an enormous amount of energy. I still have mixed feelings on the subject but I didn't have a choice in the end as my work involved lots of driving, lots of standing and a very agile mind (my brain was last seen on a train crossing India but has left no contact number - it's done a bunk).

Hope my mixed up ramblings help a little

Katharine

Katharine

 

[lazylegs]

Taking some time off may be enough to help get the disease under control. You may not actually have to give up your job. It is worth a try. Once that period of time is nearing the end you can reevaluate the situation then.

I thought I would go crazy not working. Actually it is just the opposite. I can rest when I need to. I have less stress and don't have to feel guilty about calling in sick and letting the rest of the team down. Dr. appointments are easier to schedule and are at times when the doctor has more time to spend with me. When my husband comes home from work I am not a total zombie and usually have a meal ready. The chores can be done around how I feel not after a long day at work. Despite the loss of money it has been a very good decision for me.

Take care,
Lazylegs

 

[karen.w.]

Hi,

I'm sorry you're going through all this uncertainty :sad: it's a difficult one to answer..the disease affects everyone at a different level so it's a personal one regarding giving up work.

personally I could not work at all. I have 2 children aged 14 & 10 and although it's much easier than when they were little, my family still take up all my energy..however I am lucky enough to be in a situation were I don't need to work financially, which sadly isn't the case for some people.

I would suggest writing a list of all the pros & cons of taking short term disability? also maybe try sitting down & talking openly with your family about how you feel if that's possible..you said you are tired of fighting so maybe you need a well deserved break to take time out & think things through? is your disease under control at the moment?

sometimes it's not about giving in it's about being realistic about what you can cope with. it's very difficult though & a major adjustment to deal with.
although I don't work I am still quite independent & even manage to go to college now it's finding the right balance.

I wish you lot's of luck with whatever you decide
take good care :hug: xx

 

[mississippi girl]

Thanks my work also requires alot of mind work not alot of standing and walking so I am ok with the mobility issues that I have. I would be a financial burden but right now everyone thinks it is better for my health to give it up. It is just so hard to let go and I do not know how. Physically I believe my body is telling me to let it go and mentally I am fighting it. I wanna cry anytime I think about it but I am scared of pushing too hard because I know my kids need me. Ideally part time would work however part time would financially kill us where if I go out of short term disability I do have insurance that will cover my income to a point. The memory loss and not knowing what I am doing most of the time is the hardest thing for me or when my kids look at me and say "poor mommy are you hurting again."

My disease is nowhere near under control. I go to my rhuemy tomorrow, my nuero next week, gi dr week after that and the nephrologist the week after that.

 

[specialk16]

Mississippi Girl,

It broke my heart when you said "when should I just let go and give in to the disease"... that is the last thing I would ever want to hear from someone.. but you sound so tired and defeated, and sometimes we have to listen to our bodies, which sucks. I am keeping you in my prayers, I don't know what I would do if I felt like I was losing my independence (I'm a very independent girl like you too... single mom, works full time, participates in my son's activities, etc).... See what your docs say and then go from there... you can only do what you can do... and I would hate for you to overdue it... I am definitely keep you in my prayers, I am a firm believer that God won't give us more than we can bear, and it sounds to me you are a very tough and strong woman. Please keep up updated and try to keep your spirits and attitude in tact... it always helps if you have a good attitude going into anything... at least that has been the case for me

Love and Hugs!

 

[Jenkay]

I went through this two years ago and it was so hard. It was really all about the independence, for me I did lose some of my independence, especially financially as I brought in 1/2 of our income but I was a very sick mom and wasn't able to take care of my children and was fighting for a year to hang on to my job.

Looking back at that difficult time, all I could do was work and that I wasn't doing to near the standard I had in the past (it was taking me 2 or 3x as long to do my job that I had been a wiz at and so much missed time), I wasn't able to take care of my family to any degree or myself, I lived that way for quite a while hoping things would go back to the way they were, but they didn't.

It was so hard to know when, I just kept trying but between my doctor and husband and I we made the decision and didn't look back. It took time to adjust, financially & emotionally. But I found unbelievable treasures along the way like the time I'm able to spend with my children, I don't get a lot of good hours in the day but I can save them for my family or something special. My children would have been fine if I never got sick and kept working but I do believe they have benefited from me being at home. Sometimes I wish so much I could go back to work so I could give them more (materially) but when my little one says "mommy I'd do anything to make your lupus go away but I just love having you home" it makes you stop and think about things.

The time you get to rest is wonderful, you'll hopefully have less stress overall but financial stress can be tough (somehow it always seems to work out and we usually can do with a lot less than we realize). It is so so hard, it is still hard but it was the right decision for me.

My heart goes out to you and I wish you the best.

Jen

 

[Jennannshear]

:shrug: "when should I just let go and give in to the disease"... The answer is never.. and yes that also broke my heart.. and partially because I have been there.. and recently might I add. I read your post and I cried.. I too have not been able to drive.. and the like. I went through the greiving stages for a while.. and right now I have come to acceptance.. but not in a sense that I let go and gave into Lupus.. I just decided to sit down (today actually) and write down all the things that Lupus has affected .. and then I decided to write down all the things it has not affected. I personally feel that I need to be still and find peace in my day to the best of my ability.. like today, I took the kids to the YMCA.. got dropped off went inside.. and they played and swam while I enjoyed a cappuccino and read some in my book and journaled.. I was able to do that in the air conditioning.. and it sort of gave me back a peice of myself that the Lupus put aside for the time being.. I hope your able to find comfort and peace and balance.. I want to give more advice but the fact is, I am in the midst of the same ... he is to hoping for a better tomorrow.. and the next day and the next day and the next...

 

[mississippi girl]

Thanks to everyones replies. I saw the dr and he agrees that I need to take some time off and NOT be driving. He is going to fill out the insurance papers for me. I am going to try and talk my boss into letting me work from home instead of taking off. That would be a win win situation for everyone. I may have to come into the office one maybe two days a week but I can handle that.

Your understanding and wisdom is always welcome and a comfort.

I will keep fighting this and it will not beat me!