Living with CFS: Q&A with Sophie Aylmore

To walk around freely and be able to take care of yourself is an ability we all take for granted, but for 29-year-old Perth resident Sophie Aylmore, being able to do those things is something she can only dream about. This is because Sophie suffers from Chronic Fatigue Syndrome among many other illnesses which cause her to not to be able to do some of the things that we see as an essential thing, like being able to get out of bed or walk. But despite this, Sophie continues to try and conquer the illness and complete these things.

Sophie sat down and answered some questions about how this has affected her life and how her condition has slowly started to improve and how the rise of Covid-19 has made it more difficult for her and has put her more at risk.

Can you describe what illnesses you have and when you were diagnosed with them?

So the way I find best to describe it is that I have Chronic Fatigue Syndrome, which is called Myalgic Encephalomyelitis. I also have Fibromyalgia and Acute Adrenal Suppression. So basically means extreme and unending pain and exhaustion. I was diagnosed with all that in 2003 when I was 13.

When did you start noticing the symptoms appear?

When I was twelve, I was playing in netball tournaments and school sports days and I would fall asleep at half time on the sidelines. I was getting incredibly tired and sick and it just got progressively worse and worse. My energy was just getting depleted and I was getting more and more viruses and at one stage I had Glandular Fever. When I was thirteen it hit me really bad and it was just beyond exhaustion. My family and I went to the doctors and after 12 months of not being able to regain energy, I was diagnosed with chronic fatigue syndrome.

Since being diagnosed with it, how has it affected your life?

So, I had to stop going to school when I was 14. I graduated with a homeschooling degree, just, with a lot of assistance. Then when I was 19, my family relocated from a farm about four hours south of Perth to Perth, so we could be closer to healthcare for me, which was a great strain on my family.

In 2009 I was bedridden. I couldn’t roll myself over, my mum and dad had to haul my body over so I didn’t get bedsores. They also had to feed me, bathe me and basically it has affected my life catastrophically, like it is really hard to describe how much it has affected my life. I haven’t had one basically. I haven’t had a life because I have been bed-bound since the age of 19 and before that, I was barely just functioning. I couldn’t go to school and things like that.

Have things medically improved and have you noticed things improve yourself since then?

When we moved over to Perth in 2009, my health did decline a lot. But in 2018 my health actually improved a bit, since I was receiving different medicines. I was able to start walking again. I started taking about six steps and it was incredibly painful. Just because I could take six steps didn’t mean I wasn’t in pain or not extremely exhausted. It just means I am that tiny bit better, where I can push through the pain and the exhaustion and I have to pay a price for doing that sort of thing. At the moment I can walk about 25 to 30 steps and that is really, really difficult. I am also an ambulatory wheelchair user because I can’t walk over 30 metres. If I want to travel a further distance than that I have to use a wheelchair.

You ended up getting well enough to move out and gain a little freedom. How has it been to get that bit of freedom after being kind of trapped where you were?

Yeah, at the end of February/March. I made a really bold decision to try independent living. It was incredible and it was incredibly difficult. I still needed a carer to come twice a day to assist me. But I was able to do it and I was successful and my family and I actually organised a permanent place for me to stay because it was so successful. I am still incredibly unwell but I am just a teeny tiny bit better, so I can forge a life for myself, an independent life for myself. Which is actually really vital for my well being and it is exciting. However, then Corona happened and I had to move back home because it was an apartment I was living in and I was going to move into my new apartment where I was going to live permanently and independently. However, because of Corona and being exposed to public spaces like a lift, a car park and just living communally like that, my family and I decided it was safest if I just went back home because I wouldn’t be able to live within the protocols of isolation that I need to if I lived in an apartment block. I would be trapped up there and I wouldn’t be able to go outside.

With Coronavirus coming in, was there a worry about being more at risk and being more careful with things?

Yeah, so I have been in isolation for about three weeks longer than everyone else. So by isolation I mean, I had to cancel my care workers, I had to not see my family or friends and I have had to not go outside and go to the shops and I had just started independently going to the shops, meeting people, having my friends over for dinner. Now all that has had to stop. One of the actions I had to take was going into isolation before everyone else and have stricter rules. I am currently in quarantine with my mum, who is also my carer and my brother, my sister in law and my little niece and nephew because my mother shares childcare duties with my brother and sister in law. So yeah, we are all quarantined together.

How big of a risk factor to you is Covid-19?

I am lucky because I don’t have any lung issues, so there are the people most at risk. But having a chronic illness and being auto immune compromised means I am just more at risk and if I catch a regular virus, my whole health suffers. I caught a virus at the start of 2018, just as I was starting to get better and it set me back a whole 12 months, it took me a whole 12 months to recover from it. If I got Coronavirus, it would be catastrophic to my personal health. It would set me back an immense amount, which would be heartbreaking since I only just started to gain some independence and some freedom and some of those tiny little life goals that everyone else just does without thinking twice. I have only just started eke them out and it is just so hard for me to do. So if I got a virus, my health would be setback. All those tiny things, like taking 30 single steps, I wouldn’t be able to do it. So it is a heartbreaking prospect, the thought of contracting Coronavirus.