When is Lupus NOT An Invisible Illness?

When you work and juggle Lupus and Coronary Disease with a Genetic Neuropathy , Lupus ceases to be an Invisible Illness. There are many times I cannot hide my Lupus away and just get on with the job.

I have been employed in my current job since late 2006, following a major heart attack, and the progression since then has been insidious and increasingly visible. From staggering on the stairs, to losing the plot, to looking like hell, to falling asleep at my desk, it’s all been on the agenda.

I’ve previously managed sales figures, written company publications, balanced stock and ledgers, designed macro spreadsheets, juggled team dynamics, controlled debtors ledgers, and processed payments for thousands of stock items on a monthly basis. However as my Lupus progresses, I can no longer do these things. My cognitive abilities have decreased and I think I’ve probably lost at least 20 IQ points in the last 2 years. However I have gained a great job with a great employer ready to give me the boost I need.

I‘ve been fortunate to have my Employer tailor my current job to my physical limitations.. As a Rehabilitation Return to Work Coordinator, and a Workplace Safety Officer, I can use my people skills, and my medical background  to the utmost, AND self pace my work load. And they’ve given me a three day week, which allows me to juggle those Clinic Appointments or just those “Lupie” can’t get out of bed days.

The joys of going to work knowing that if you are not up to par there are no deadlines to meet, is a tremendous help.  However, I think my Employers are Saints.  They’ve put up with so much and seen so much I think they know as much about the physical manifestations of Lupus as I do!

Going to work whilst having most unattractive rashes is not a great boost to your ego, and I appreciate that they hide me away in an office away from public view – well not really, but it’s nice to not be in public view when you are sitting at a desk (under fluorescent lighting) wearing a baseball cap and trying desperately not to cry your eyes out because you can’t remember the word/phrase/slogan  you want to put on your latest Safety Poster ,or the correct terminology on  a Plant Hazard Assessment.

Then there’s the fumbles…when you land your coffee/lunch/other  on your uniform and walk around with odd blotches and stains all day, looking for all the world like a walking bag lady. This dropsy also applies to pens, rulers, sheets of paper, paper clips, scissors and general stationery.

And don’t get me started on memory – try the Confidential File you can’t find because you’ve already filed it and forgotten you did, or worse, forgotten WHERE? Or knowing you had something planned for today…and forgot to write it in your diary. My best friend is the calendar in my email. And I have never found the scissors I took to the storeroom in August 2010. Or in fact the tape dispenser that went with it!

The Staggers also play a prime role in my job, my office is up one flight of stairs inside a rather large and draughty shed full of vehicles, equipment, tanks and asphalting kit. I can risk assess a Flocon Truck or an Excavator,  but can’t walk from here to there without wobbling, nearly tripping or otherwise endangering my poor body with bumps, scrapes and tumbles. And don’t let’s talk about stairs…when you can’t feel your feet, they can be more hazardous than walking a tight rope. I cling like death to both hand rails and shuffle off the landing until I am safely in my office, only to trip on a piece of nothing in front of my desk.

Lupus makes you TOUGH. I fell over forklift tines in January of last year. Two teeth knocked out, a broken wrist, split face,grazed knee, sprained ankle, and  shoulder Impingement , but I was back at work the next day. However whilst completing the paperwork at The Emergency Department I was asked my position. When I lisped through my split Lip “Workplace Safety Officer and Return to Work Rehabilitation Coordinator” the ED Clerk burst out laughing, as did the Intern behind her eying off the nasty (but subsequently well done) suture job coming up.

Lupus shows it’s face at my job everyday, but  you  know, I have a job, I love my job, and I’ll be damned if I don’t smack it down every time it dares show itself. I will work as long as I can, and I will enjoy every moment, because I take Lupus to work every day, but I’ll be damned if I’ll let it rule my job.


2 Comments (+add yours?)

  1. Helen Phillips
    Jul 16, 2011 @ 06:58:18

    Thank you for a beautiful and well writen piece, I thought it was just me. I have trouble with stairs I get up from a seat and just clapse back into it. I tire after doing
    two rows in a shop for groceries. I put things down and can’t remember where i put them. I forget names of things (my family tries to ignore it when i get a wrong word out). last week we went shopping for a dishwasher but I kept calling it a washer dryer, for the life of me I couldn’t get the right word out. I am scared because I was diagnosed only 2 years ago and the disease has progressed very fast. I was told last week that my bloods showed problems with my liver now. I thought your comment on this disease and your ability to cope was amazing. I am/was a nurse and am now on disability, I hope at some point I will like yourself find an employer who can work around my disease and that my disease calms down enough for me to be able to work. Thank you Helen


    • annielupus
      Jul 25, 2011 @ 15:01:55

      Helen, I am very lucky. However, regardless of the fact I work, I now am finding it harder and harder to “make it” through the day. I am down to 3 days a week now. Boooooooooo


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