I don’t suffer – I survive Lupus

I don’t suffer – I survive Lupus

I usually drift off during my lash appointments. It’s the small matter of having to lie still and not being able to open your eyes for at least an hour and a half. Sometimes two hours. Unfortunately for Sammy, I’m a fiddler and struggle to keep still. So, the only other alternative is to catch a snooze. You’d think that sounds like bliss – to me catching a nap during the day is something familiar but unwanted.

It’s quite a laugh really. Sammy has confirmed that I twitch a lot. I know this of course, as I often jerk myself awake!

However, during my last appointment Sammy asked me out the blue; what is Lupus?

You see; I’ve probably mentioned this a few times to people (I certainly do not hide it) that I have Lupus. Or rather I was diagnosed with said disease.

Lupus what?

Rewind to when I was a little girl, and forever ill with something. Later on, in life I realised that it worried my mum quite a bit since we had access to an incredible medical team (I was raised in a military house and so we had always gone to 1 Military Hospital which was during the 80’s and 90’s one of the best), however the specialists were unable to distinguish what was wrong with me. I have vivid memories of the halls and rooms, the smells and sounds that I absorbed whilst mostly feeling out of it or hardly conscious due to high fevers.

Marc Dryden-Schofield Photography
December 2018 Camps Bay; Cape Town

One of my worst memories was when the team decided that my fever was so high and my body so sore, I had to be tested for meningitis. I was tiny and didn’t quite understand why my mum couldn’t be with me, nor why they rushed me into some strange room or required 4 staff members to pin me down after forcing my body into foetal position only to stick the thickest needle (which at the time seemed to me as big as a milkshake straw) into my spine.

It must have sounded like I was being cut open alive, second before I passed out. It was to my knowledge the most excruciating pain. When I regained consciousness, I was still there. Minutes later my mum was allowed to see me and hold me. Anyway, it turned out that it wasn’t meningitis.

As always; they sent us home with those medium sized pharmacy packets filled with syrups telling my mum it’s a “virus infection”.

This carried on for years. During high school I seem to fall ill every time during exams. I’m talking about fevers that made me hallucinate. And I actually loved school (I’m not kidding). I used to play hockey and run long distance and cross country at school. However soon realised that my knees were acting up. At that point my mum was a single parent and due to the financial strain on the family I really tried not to fall ill or create any attention regarding my health or any injuries. So of course, I hid that as long as possible.

Are you really sick though?

Years later, living in Britain I was ill more often than not.  A common feeling/assumption/observation for an outsider is that a Lupus sufferer is a hypochondriac. Always feeling like poop but no one can determine what is wrong. The thing is that you feel so awful however you look fine. You seem fine. And eventually a brave face and pretend everything is okay, because it has to be right?

I spent so much time at different institutions to be tested that in hindsight I am relieved that we were there and the NHS looked after me so well. Till today we joke in our household that everyone with a health issue should get checked by me “the doctor” since I’ve been around that environment so much!

At some point I was so ill that my husband considered bringing the family back to South Africa in case something goes wrong – I’d then at least be close to my family.

During 2007 I finally started feeling excited and hopeful. Why? Because I was diagnosed with PCOS (polycystic ovary syndrome), Liver Cirrhosis, Rheumatoid Arthritis, Costochondritis, Hypermobility Syndrome, Alopecia and circulation issues to name a few. Now this sounds disastrous, however to me I finally had a diagnosis! That would mean that I could start treating it. Within days my ANA test returned positive for SLE (Systemic Lupus Erythematosus).

What is that? SLE or Lupus is a systemic auto immune disease. It occurs when your body’s immune system attacks your body’s tissues and organs. The cause for this to happen is unknown. This disease can not be cured, and can be fatal.

Whilst I was excited, my family was in shock and petrified. The specialists wanted to start treating the lesions on my liver as a matter of urgency. I needed to go for various blood tests as my blood platelets were abnormal. The first round of chemo was suggested as well as a well-planned programme to start treatments and medication.

I was severely anaemic, and as a result of the cysts on my ovaries I seemed to be on my monthly cycle most the month – every month.  My body rejected several treatments and to be honest I was in bed more often than not.

My children will tell you that they recall playing in the hospital halls whilst waiting for me to be scanned/tested/prodded/poked.

The day the specialist told me that I will start chemo the following day; the penny dropped. What if my body is not happy with all the years’ meds, stresses etc.

I met with Cindy the following day instead – a naturopath we met through our business who said that she will help me at least start feeling more human. We sat for hours and talked about my medical history and whatever I’ve done in the past. EVERYTHING.

She worked out the most laughable programme (especially compared to the modern medicine world that I knew) and I agreed to give it a shot.

That was the day I gave up red meat, anything with gluten and diary. I started my green juice habit that day too. Till today I drink a “green juice” and swear that it is one of the single best add-ons to ANY diet. There were also strange treatments like liver packing, urine washing and enemas.

Back to recovery

Within days I could stay awake for longer, and within weeks I started feeling better. My hair started growing back and my joint swelling started subsiding.

I would never ever suggest to anyone to ignore their specialists or not to go seek medical attention if and when they are ill or have been diagnosed with any ailment, illness or disease.  In fact; when I have a migraine – pass me a migraine cocktail please! When my hips pop out or my back spasms so much that I have to be carried to bed – pass me the Tramacet!

Personally? I believe whole heartedly to listen to your body. I get teased and I get mocked for my health habits, my routines and my beliefs – its okay though. Against my medical team’s beliefs in London – I’m better than I’ve ever been!!  I’m fit, I’m healthy and in shape.

Weight training has been an incredible saving grace. Oddly, weight training is phenomenal for arthritis. And purified water….an incredible healer.

I live a healthy life and only now and then have little setbacks. Stress and “over doing” things would encourage a flare (a flare is when I become ill).

Please feel free to ask me anything with regards to this. Should you wish to make a difference – please support the chosen foundation in your country. In South Africa it’s http://www.lupusfoundation.co.za/