Interview October – Char

I’m starting a new feature! It’s Interview October, where I’m kicking off an entire month of guest posts with fellow bloggers who also live with Chronic Pain and Invisible Illness. Let’s start off the series by meeting the lovely Charlene Schoeman:

Char

Introduce yourself and tell us a bit about you…  

My name is Charlene. I was born and raised in South Africa, I then moved to Italy where I taught English to adults and children of all ages. After ten years in Italy, I moved to England where I was a Teaching Assistant, working one-to-one with disabled children. I loved my job!

Chronic illness(es)/disabilities I have… 

In 2014 I was diagnosed with Premature Ovarian Failure, which is basically early onset menopause and then in 2015, I was diagnosed with Chronic Fatigue Syndrome (Myalgic Encephalomyelitis). I have been housebound and often bedridden since.

My symptoms/condition began… 

My problems started in 2014 with a lot of pain all over my body. Doctors did all kinds of tests and could not find anything wrong with me, so I was sent home with painkillers. The pains were mainly in my joints like my knees, hips and fingers and also in my larger bones like my thighs, shins and upper arms. It was an intense stabbing and shooting pain and it would move around.

I was also picking up every bug that went around, working in a primary school meant that I was ill every other week. I started feeling guilty for taking so much time off. The day it really hit me was actually 1 April 2015 – I was cycling with my dad in Italy while on Easter break and I lost my voice, later that evening I had a sore throat and earache – I have been at home since. I did try returning to work a few times after that, but never made it through a full day and would then need days off to recover from those few hours at work.

My diagnosis process was… 

I initially went to my doctor in Italy and then again in the UK for the ear and throat infection that, despite multiple courses of antibiotics, was only getting worse. It lasted over a month. When I continued to deteriorate and started feeling really weak and exhausted, they did loads of blood tests to try to find the cause of my symptoms. They tested me for deficiencies, for infectious diseases and I’m not even sure what else. My doctor just kept saying she would test for this and that “just in case”.

All tests came back negative – according to my blood and urine, I was healthy. But I was in so much pain and so weak. She said it was likely Post Viral Fatigue. I was not convinced of this diagnosis. It sounded way too mild for what I was going through!

I then had a routine visit to my endocrinologist for my ovarian issues, I mentioned my symptoms to him and he was concerned. He had me tested right there and then for a few more things in his department and booked me to test for Adrenal Failure, prescribing an emergency supply of cortisol for the meantime, just in case. Again all tests came back negative. He said it was likely Chronic Fatigue Syndrome.

All tests were done twice, a few months apart and again everything came back negative – healthy. I was then referred to a Chronic Fatigue Clinic by my doctor and after a 2-hour assessment with a psychologist, they reported I was mentally sound and they agreed that I have Chronic Fatigue Syndrome.

The hardest part of living with my illness/disabilities is… 

The hardest part about living with Severe ME/CFS is not being able to do everything I want to do and love to do. I cannot work, I cannot cook, I go months without being able to paint, I can’t do gardening, go for walks and explore nature, I can’t leave the house or travel or swim, or help my family if they are ill. I can’t even bath more than once a week! It’s having so many plans and dreams and goals – daily – and not being able to accomplish even one of them some days – many of those days are spent in the dark, unable to tolerate open curtains or light. But I continue to plan and dream!

A typical day for me involves… 

My typical day involves me waking up early, lying in bed for hours “waking up”, I walk to the bathroom with my walker, I sit on it to brush my teeth, I rest back in bed after bathroom trips. I read a little. I pray. I check my social media accounts and respond to messages. I might just lie there daydreaming for a while in between all these things. I try to write something in one of the many drafts I have for my blog. It takes a long time to complete a whole post! I usually don’t finish any of these activities.

Then it’s lunchtime, my sister (who is my full-time carer) brings my lunch to my bed or to the sofa if I have managed to get to the living room. I eat reclined and then lie down for hours while digesting. This is when I usually watch Netflix… I just watch it until digestion is done and I have enough energy and cognitive function to recline again and read or write some more or do some art or craft while reclined.

During better months I might sit at my desk for a few minutes and watercolour. I have my pages cut to small postcard sizes so I don’t have huge projects that never get finished. Even the small ones will take a few sessions to complete.

Dinner time is the same as lunchtime. Eat, Netflix, then try to do something online again. Having such severe ME/CFS means I’m completely isolated and housebound, so my only connection and contribution to the outside world is online. It helps that most of that can be done on my phone which is easy to use and light enough to hold most of the time – though there are times daily that I am unable to hold my phone too!

The one thing I cannot live without is… 

The one thing I cannot live without is God. Honestly, I don’t know how I would be this positive and hopeful and at peace without His joy and peace that passes understanding. Also, my sister. She is such a considerate and selfless carer.

Being ill/disabled has taught me… 

Being ill has taught me to be less judgemental of others. We never know what somebody is going through. Our problems are not always visible. I’ve also learned that there is no one-size-fits-all solution to any health problem. Eating fruit and doing exercise can actually make some people much worse. Including me. Who knew? I would never have imagined that.

So my biggest lesson is to listen and not judge, and no matter what, be kind always because you don’t know what somebody might be going through.

What advice would I give someone recently diagnosed… 

My advice to newly diagnosed patients is to listen to your body. Symptoms are real and they not only tell you there is something wrong, but they guide you to a solution too. If you’re exhausted, rest. If you’re hungry, eat. Your body is in a constant fight to survive and heal and recover… listen to it and be your own health care advocate. Find people who will listen and understand you. Get connected online with people going through the same things. You do not have to walk this path alone!

My support system is…

My support system includes my sister who is my full-time carer, our parents and my online support group for people with ME/CFS.

If I had one day symptom/disability-free I would… 

If I could have one day completely symptoms free I would want to spend the day out with my family, swim in crystal clear waters, go walking in the countryside up hills and mountains to enjoy the views and eat all the foods I cannot eat in my condition – things like gelato in Italy, mums roast dinner or pasta al ragu, and just so many other things… I’d also dance and jump and do cartwheels!

One positive of having a chronic illness/disability is…

Depending on the symptoms and severity, which in my case fluctuate a lot, one of the benefits of having a chronic illness has been having the time to do some things I couldn’t do before. For example, I can draw and paint and blog and read and watch lots of films – I never had time for those things while working, even though I have always loved them.

Another great benefit I’ve had from this illness is community. Getting to connect with so many amazingly strong and resilient human beings from all over the world. Hearing and sharing their stories and supporting each other.

My links are:

http://chronicallyhopeful.com

https://www.facebook.com/chronicallyhopefulblog

https://www.instagram.com/chronicallyhopefulblog

https://www.twitter.com/chronic_hopeful

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