Living with Lupus

Now, we all know better than to judge a book by its cover. Although a more apt saying in my case would be to never judge an upholsterer by their multitude of re-covered chairs. It may surprise you to know that I live with a disease called Systemic Lupus Erythematosus (SLE). Diagnosed shortly after I started my business, it’s always been there in the background as I’ve carved out my career in upholstery. So, today I thought I’d tell you a bit more about it…

Most of the time, living with Lupus doesn’t affect my day-to-day life that much at all. For some people it can be a daily, constant battle. For me, it all started in 2013, just two months after I set up Vintique Upholstery. I caught Parvovirus – a nasty and contagious illness that is common in dogs but not so much in humans. It reacted with another blood disorder I’ve had since birth which runs in my family called Congenital Spherocytosis.

I reupholstered this Parker Knoll Froxfield chair during my first Lupus flare, as well as the projects below.

Up until this point, the Spherocytosis didn’t bother me too much apart from occasionally getting a bit anaemic. This combined with the Parovirus though was like the perfect storm and led to Hemolytic Aplastic blood crisis – in which the cells of the bone marrow that develop into mature blood cells are damaged, leading to low numbers of red and white blood cells and/or platelets.

My bone marrow had switched off and I’d stopped producing new oxygenated blood cells. The virus had affected my blood so badly that by the time I got diagnosed by a haematologist, I was in liver failure and with my lungs not far behind, I was 48 hours away from total organ failure. It would be an understatement to say that I was really sick. The solution should have been a blood transfusion but because my immune system was so over-active, my body would have rejected it.

Getting back on track

Six months later, having recovered to some degree and got my health back on track through a combination of medication, rest and supplements such as Folic Aid, I was building the business far more gradually than I would have liked because I was so badly lacking in energy.

This handsome dog sits in an antique chair I reupholstered in Sanderson Kandinsky fabric.

At this stage, I went to see a virologist as the NHS had discharged me even though I still felt so weak, and I kept saying something else is wrong! He ran some tests and diagnosed Lupus. Suddenly the pieces of the puzzle came together. It was strange because I’d always had major joint issues throughout my life (including a spinal fusion in my early 30s). It had been there all along, but because I’d seen individual consultants about various health issues, of course no one had joined up the dots.

SLE is defined as a disease of the immune system. Your immune system protects your body from infection. But when you have Lupus, your immune system attacks your own tissues, organs and joints. This leads to tissue damage and illness. The symptoms vary from one person to another and while some have many, others have just a few. There is no cure so, almost 10 years on, I have had to learn to live with Lupus and how it can suddenly creep up on me and floor me.

Learning to live with Lupus

I find being an upholsterer helps me – the job gives me flexibility and freedom. The Lupus doesn’t hold me back too much although I do have to pace myself. I have got into weights to strengthen and support my joints. Having a physical job is better I think than sitting still. I watch my diet too.

Antique French wing chair reupholstered in Linwood omega velvet.

At its worst during a flare, I must admit it’s difficult to deal with. Stress can kick it off and when the Lupus is flaring up, I can feel it impending like a dark cloud on the horizon. Brain fog makes thinking and seeing straight virtually impossible and the tiredness is debilitating.
People say, ‘take a nap’ and I try to when I can (when it first started my business I’d have to pace myself, so if I’d started a chair in the morning, I’d have a sleep halfway through and then go back to it in the afternoon). The trouble is though that however much you try to take it easy, sleep never makes you feel rested or recovered. And taking it easy doesn’t come easy to anyone self employed.

Other side effects include joint pains, pins and needles, plus every limb feels like a dead weight. Walking is difficult, energy is so low and it becomes hard to have a continued conversation. The sheer tiredness affects everything, including my eyesight. It’s the strangest thing and as well as cold sores – a sure sign of being run down, I can get symmetrical rashes on my body.

“Lupus is a frustrating, often invisible and under-funded condition and it’s frequently misunderstood.”

A generously sized Heals sofa I reupholstered in Bute wool Ramshead fabric in Grass.

Lupus is a frustrating, often invisible and under-funded condition and it’s frequently misunderstood. I now have fibromyalgia too, which is linked to Lupus. Gosh, the fun never stops! I have steroids to manage the condition if necessary but I do my best to avoid them, if it’s particularly bad, I can go into Guy’s Hospital and have a version of Chemotherapy to slow down my immune system. Even something like an insect bite can cause my body to overreact.

So, there you have it. As they say, many people are living with things that we have no idea about. What I think this proves more than anything is that you can still have a successful business despite any challenges life may throw at you.

A cosy French antique chair reupholstered in brown leather from Crest Leather.

Would you like to sign up for a Vintique Upholstery POWER HOUR with me, Sharon O’Connor? Ideal for anyone starting out or just feeling a bit stuck in their established upholstery business, I can give you the support you’re looking for with a one-to-one online session (or sessions). In this targeted hour, we will identify what your specific challenges are, then try to fix them! Download the PDF here. You’ll then be able to access a discovery form, which will tell me where you are with your business and what you’d like to discuss or learn.

£125 per hour. Sessions take place virtually over FaceTime or Zoom.

For more support and information about Lupus, visit https://www.lupusuk.org.uk/