Working and Bouncing Back with Lupus

Working and Bouncing Back with Lupus
My little harborside workplace

Girl_Who_Cried_Wolf

This time 10 months ago, it was the peak of the summer season here in the Southern Hemisphere, which meant that, in my little oceanside town and surrounds, business was in full swing and working hours were plenty. I worked at least five long, hot days a week behind a coffee machine, with only one or two days off to rest and recuperate. I used to bounce back fast, but these days it’s not quite the same.

While hospitality work doesn’t qualify as ‘manual labor’ as such, it still takes a toll on the body. We spend pretty much the entirety of our shifts on our feet, either walking or standing. By the time you’ve reached day three or four, you’re definitely wearing down – even those who are not chronically ill!

As spring has come around, I’m trying to ease myself back into more shifts, trying to find out what my limits are to know what I’ll be capable of in the summer months.

I don’t want to push too hard but, in the same instance, as I don’t work full-time, this is when I’ll make the majority of my money for the year — and with a month’s holiday in Europe in my sights, saving is definitely on my mind.

I feel like I’m walking a tightrope. I don’t want to play it too safe, otherwise I won’t come close to achieving my goal. Yet if I go too far and push too hard, I’ll take a dive off the deep end and spend the following days having to put myself back together again.

Working as a barista and waitress, I spend my time communicating with the often critical, sometimes unforgiving and always demanding general public. This Melbourne Cup long weekend, I took four shifts and trust me, as I write this at the end of day four, I’m feeling it!

Even by day two I was craving an alarm-free morning and a café-free day, where I could wake up when my body felt ready and not have to carry any plates, cups or cutlery that weren’t for my own use.

After eight hours of making coffee, waiting on tables and cleaning, I’m exhausted both physically and mentally. I need time to myself, to rest and not have to think about anyone’s needs but my own; but until I clock off, my mind and attention belongs to whoever walks in that café door.

After working hard, I don’t want to move

It’s terrible, but by the time I get home I don’t want to do anything: I don’t want to move, I don’t want to think – I just want to be.

In over three years, this hasn’t changed. However, as I came home from a long day yesterday, I came to realize that one thing in particular is very different.

After watching TV for a while, my mind started to unscramble itself and I was back to feeling halfway human. But I noticed that no matter how resilient my mind was, my body was not going to be following suit anytime soon.

I thought of all the things I could do that night, but even the idea of just cleaning my room felt like a big task. It takes at least a night’s sleep for my body to bounce back, and even then I don’t feel like I’m 100% recharged. Unless I have a couple days off, I’ll be starting somewhere around 75% at maximum.

I’ve never been where I am right now, never been so physically tired. I’m used to telling my body to jump and it’s only response being, “How high?” I’m learning that bouncing back lightening-fast is both something I took for granted and something I’m no longer privileged to have.

I can already tell this is going to be a long summer; the sun is going to wreak havoc on my body, my mood and my energy supply. I know I’m going to make a lot of mistakes and pay for them accordingly — sometimes, it’s not going to be a small cost either.

This will be the hardest and most exhausting three months of my life to date, and I know this even before it starts.

But I also know that there are only two options:

  1. Give in and spend my summer enabling my lupus, letting it stop me from working, creating new memories and all-round sucking the fun out of my favorite pastimes and season; OR
  1. Fight for what is rightfully mine, and spending my summer living my life as limit-free as possible.

I know not every battle will be a triumph and at times I’ll definitely be punished for it, but I also know this may not always be a viable option as the years pass me by.

I may not be limitless, but I am making it a priority to ensure when I can no longer run from that wolf, and he comes to sit my side, I can look back at all those times I stood tall and didn’t hide, and smile knowing I gave it my everything and it was always my life.

 

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

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Kristiana “Kristi” Page is a surfer, barista and university student studying an Arts/Science Degree in Philosophy/Mathematical Modelling. Living on the picturesque Bellarine Peninsula on the South-East coast of Australia, she’s deeply passionate about salt water in all forms, amazing coffee – even though she’s not allowed to drink it – and above all else traveling the world: one country at a time! Diagnosed with Stage IV: Lupus Nephritis at 20, she’s determined to not be defined by her auto-immune condition. Using writing as a medium for self-expression she hopes to share her life and journey to both raise awareness and support others in similar situations! A big believer in the concept of dialectics, she loves to share her usually unorthodox – and sometimes controversial – views with the world; and in turn have others share theirs with her. Quirky by choice, inquisitive by nature and above all else: smiling, always!

3 comments

  1. Deborah Campisi says:

    After working as a professional HR employee, I just couldn’t do it any longer. I was having a hard time recalling information, I lost whole periods of time, had 2 TIA strokes while on the job. My whole life, I was usually the first one in and the last one to leave. But now I couldn’t even get out of bed and I was running late almost every day to work.
    So, I gave in. I couldn’t do it anymore. We lost some luxeries including our home in the process, but so far we are surviving. I had a high power high stressed job making good money. It was killing me. The first thing I did was go into a flare and was in bed for about 3 months. Got so sick I finally went to the doctor and they said in addition to fibro I have lupus. Now I typically don’t leave the house except for grocery shopping and doctors appts. I haven’t driven for over a year. Even though I am ill, I have never been happier. I am actually living some life, instead of letting a company kill me. I have applied for disability and I pray every night I get it granted.

    • Tim Bossie says:

      We also hope that you are able to have your disability granted, but are so encouraged by your story. Sometimes it does take having less in order to enjoy more.

    • Kristiana Page says:

      I’m sorry to hear your Lupus caused you so much trouble, but I’m happy to hear in that you’re in a happy headspace. It gives me great hope and inspiration for my future to know that even if things get really hard, there is a silverlining if I know when to put my health and happiness first.
      I wish you the very best and hope that you get your disability granted very soon. X

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