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Thread: losing the energy n will power to fight the battle

  1. #1
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    Unhappy losing the energy n will power to fight the battle

    At the point of writing this, i am actually sitting on my bed in my hospital room, 3rd night to be exact.

    I see theres a lot of saints here trying to help everyone out... And hope i would gain some strength here.

    I am 30 yr old female frm Malaysia, where sun exposure avoidance is almost inevitable. Single parent of 2 boys aged, 7 n 9. Have a few pagaent titles under my belt, didnt achieve much academically, but proud to be holding a managerial post of a reknowned vehicle franchisee.

    I didnt get to where i amcareer wise today easily, it came wit a lot of hard work n obstacles, plus a rotten marriage, everything just made me a stronger person, not only for myself, but for my boys, my family and my sales team. Everybody looked up to me for wat i achieved n wat i am. I worked hard to be where i am and tripled income in less than 5 years.

    I was officially diagnosed with sle a year ago, of which i knew it wascoming along earlier with situations i was unable to get out of bed due to severe joints pain, but resolved to chinese herbs and medications, which worked for a couple of months, but didnt later on. I had alopecia few years back, bad hair loss after pregnancy, numbfingers, colorful fingers toowhichcould turn blue, purple, white raynauds they call it, and wonder why i gobbled water like i was in the desert, why didnt i keep my contact lenses intact, why did mine hurt n was so dry aftershort period.... Supposed to last 8 hours or so.... And let me introduce the SJORGENS symtom.

    With all this, i was still ignoring all conditions and went on with lifeas usual - crazily busy trying to conquer everything ahead. It was only when i started developing lesions on my arms which worsens that i could practically see my bones through it. U can imagine the pain i was in, biopsy after biopsy, test after test, the sle was confirmed.

    I live my life as though nothing happened, juggling medicAtions,celebrax,aspirin, planequil, predisolone etc... Regular visits to the rheumatologist which i have to take an hour flight to meet, options are near to zero here in term of searching for options or second opinion.

    I thought life would be the same, i thought i could still chase my dreams and conquer, i thought i could expand mydays and time like i always did.

    This time round, the lesions creeped to my back, wat was only thumb size grew to palm size then hand size. Being one tough nut or cookie, and had tattoo n child birth, u could imagine the pain tolerance level, which still i have to submit to in tears.

    Though independant in many ways,my boys are cared for by my wonderful parents, they are somewhat comfortable running business of their own, with financial n time freedom.

    I m in dilemma. My parents are asking me hold my horses, to stop working, unless the company allows a 2 month rest, in able for me to recuperate. I cant avoid the stress, hassle n the sun in my job, and i have been hiding the sle well, only my family knows. I was concern it would affect mycareer, as i need a sustainable income to putthe boys through college.

    My parents have this mind that i would die from sle if i continued my job.

    Being under severe medicationsthese few days is not helping either, yes it minimizes mypain, but it ballooned my face so badly n my weight, i dont know where to find the courage to step out or meet people. I am on a sales n marketing job.

    How well will my condition improve if i quit my job, is it worth it.

    This... Is a difficult confession of a self proclaimed workaholic n super achiever....

  2. #2
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    Wow - you sound like a very strong person fighting very hard to be the woman you have always been.

    Unfortunately, it sounds like your body can't support that anymore...you may need to listen to your body and take care of it the same way you care for your boys and your career - don't put it last on the priority list, it is crying out for some compassion and care.

    Your boys need you to be alive and as well as you can be - and that may mean taking a break. Can you look into taking a break from work to get yourself in a better place physically? It may bean sacrificing some income or job status, but it sounds like your body is telling you you simply cannot continue this way.

    Another trip to see the doctor - maybe plan on staying for several days - sounds in order, too. If you have these big lesions on your body, secondary infections are a concern as well as the SLE, so it's really important you get those under control - quite aside from all the pain! (You must be very tough!!!!). It sounds like whatever medication regimen you are on is not working quite right - you may need a different routine. Go see the Rheumatologist - and can your local doctor set up a phone consultation with your Rheum so that they can at least be on the same page for your care?

    I am sorry you are suffering so much, but I am also glad your family is supportive and can help you. I'd say quit being such a hero and go take care of yourself for a while. It may mean making some sacrifices but you might not really have any choice - go do it now, before it gets worse.

    Sending you best wishes....

  3. The Following 4 Users Say Thank You to SleepyInSeattle For This Useful Post:

    OmaLaura (06-20-2012), sassyNerd (06-22-2012), steve.b (06-19-2012), tgal (06-20-2012)

  4. #3
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    Audrey,
    Welcome to WHL. Sleepy had some good information for you.
    All I can add is that we are here for you when you need to vent or find some information.
    Hugs,
    Marla

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    tgal (06-20-2012)

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    hi audrey,
    and welcome.

    having to face the facts of a terminal illness is not easy.
    many of us need to seek counsellors.

    to have your dreams and aspirations placed on hold, or stopped is not easy to comprehend.

    i was working in australian far north. in the mining industry, when i became my sickest.
    i now am retired on a disability pension.
    for some of us it is the only option.
    others are luckier, and are able to continue to work.

    i believe your first step should be to control your lupus.
    do what you need to to get your lupus under medical control.
    then see where it leaves you physically.

    i was also a workaholic, it was very hard to go from an 80 hour week to not working at all.

    again welcome.

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  8. #5
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    Hi and welcome to this group! I can relate to your situation in so many ways; I was a single mother at 18 and have busted my butt to be very successful in a similar field but I can relate to your dilemma in having to face the public in your field of work being sick or self conscious the most. I am just returning from a 3 month leave from my business that was hard to decide to do but at the end of the day the most important thing is your health. You have to take care of you before you can take care of your boys or have a career. Im glad to hear that you have a supportive family. I would talk to your superiors be honest about your health situation and see what your options are and go from there. If you are valuable they will find a way to accomodate you and if not then screw them because you could probably go work for a competitor when you are better!
    My husbands company has a manufacturing facility in Malaysia, and I hear its beautiful, its too far from home for me to visit tho

    Best of luck and remember that you are not alone but you do need to get better!


    Hugs,
    LenaT14

  9. #6
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    I can hear the pain and fear in your post and my heart goes out to you! Parts of your post could have been written by me; I understand your ambition and perfectionistic workaholism. It's scary that you have to now set out and figure out what your new "normal" will be. I am facing a similar quandary: workaholic perfectionist who has recently been blast out of an 8 year remission. 2 1/2 weeks ago had right total shoulder replacement with radical reconstruction of surrounding structures. Facing the left shoulder in a few months. I've gone from defining myself by my 80 hour week highly successful career to being ecstatic that I can put my own socks on. The way I see it is we have two choices to make: we can go lay in the fetal position in the corner and let our family and friends carry on without us. OR, we can look around, take stock of what blessings you do have and focus on them- faith, family, friends, a good home, etc. I know itís easier said than done and Iím not always good at keeping things in perspective either. The good news is you have found a group of folks who really understand what youíre going through.

    Looking forward to getting to know you!

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  11. #7
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    Smile Prayed

    Sorry to hear what your going through. I was recently diagnosed with Lupus too so I can kinda understand what your going through.

    I just wanted to let you know me and my grandma have prayed for you.

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