GUEST POST: what it’s like to live with chronic fatigue syndrome

My name’s Natalie and I’m from Melbourne. I love fashion, Summer, reading, the beach and eating out. I’m also not well, but you can’t tell by looking at me.

When I was 18, in June 2005, I was very happy. I studied a double degree in an area I loved, worked a part time job with people I loved and had a boyfriend, friends and family I loved. That was about to change.

I was in a tutorial at uni one day and started to feel weirdly hot, like a burning temperature. Within 5 minutes the room was spinning, I felt dehydrated and as though I was going to faint. I asked my girlfriend to accompany me to the bathroom while I got a drink because I wasn’t sure I’d make it there alone and, if I did, whether I’d pass out somewhere along the way and be left unnoticed. After that, I immediately walked to my car and drove home. To this day I have no idea how I avoided having an accident. It seemed I was blinking in and out of consciousness, I was trying not to throw up and attempting to keep my eyes focused on the road while my head was struggling to support itself. Thankfully, I made it without having to worry my parents with what I thought at the time was a bit of anxiety or a passing bug.

Two days later I got out of bed planning to go to uni and just started crying. I guess I felt like I had the flu, but it felt different and was terrifying. When I emerged from my room, Mum asked why I was crying and I said, “Something’s really wrong, I can feel it, it’s not just a bug”. Little did I know how right I was.

A trip to the Doctor left me peeing in a cup and sent home with antibiotics for a bladder infection. Came back negative, antibiotics stopped. Back I went, this time diagnosed with a sinus infection. 2 courses of antibiotics failed and my Doctor went on holidays leaving me to see another who told me she thought I had Glandular Fever. By the end of August, 2005, the test results were in and positive. I’ve never been so happy to hear there was something wrong with me – it was on paper. “Rest, keep well hydrated and eat well, it’ll pass soon”, were my instructions. That I did, too easy.

Before I knew it, it was February 2006 and time to start uni again. One problem – despite all my resting, my insane diet changes and my serious lack of mental activity, I wasn’t better. If anything I was worse. Back to the Doctor’s I go.

First one told me I just had the after virus and that I should just go to work. Second one told me that if nothing shows up in blood tests, there’s nothing wrong, and nothing did. Third one, a specialist, told me to just force myself to go out and it’d go away – so I did. 4 months later I was the sickest I’d been yet.

Back to the Doctor’s and he referred me to another specialist with over 45 year’s experience. Excited to see him I went in full of hope. I came out crying. “You’re not sick, you never were. Have you considered depression?”. Maybe I was depressed, maybe it was because I was extremely physically ill and no one believed me. You can’t even imagine that kind of frustration.

Last resort – a psychologist to help me deal with what apparently was either nothing, or depression. Oh boy, how glad I am I saw that psychologist. One look at me and he said he thought I had Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis. It’s a mouthful, but it captures a much better picture of what the illness involves). He referred me to a CFS/ME Specialist and on arriving in the office I immediately felt at home. The stories on the wall were all my story, the people in the waiting room all looked how I felt. In September 2006, I was diagnosed with CFS/ME. I met all the criteria making me a classic and rather severe case. So why did not one of the other large handful of Doctor’s I saw even consider it?

My new Doctor put me on a myriad of medications. At one point I was swallowing 25 tablets a day (from prescriptions to supplements) but I was still getting slowly worse. On Easter Sunday, 2007, I ‘crashed’. I became bed bound.

This was my lowest point and the point I want to focus on the most. CFS/ME is more common in Australia than AIDS, Rheumatoid Arthritis and Multiple Sclerosis, but unless people have had direct experience with it they generally know little about what it can do to a person. This is what, at my worst, it did to me.

Bed bound, for me, meant only up to use the toilet. It took me about 10 minutes each way, with a rest half way both ways, to walk the 15 steps to my toilet. I would often ‘hold on’ so I wouldn’t need to exert the energy, or drink a lot before hand so I knew the trip would be well used. I showered in a chair on the days I had the strength, but it meant I couldn’t do anything afterwards. Eating was tiring because digestion was very hard work and some days, although I ate in bed, I was too unwell to sit up, lift my fork or chew to feed myself. Anything that required too much chewing was out. I could not watch TV, listen to radio, read, look at pictures or the computer screen as it left me so weak I was unable to move.

The first time this happened I was cold and wanted a jumper that was next to me on my bed and couldn’t even pull it across me – this was paralysis. If the house was on fire, I wouldn’t be able to get out unless carried. Phone was out of the question, visitors were out of the question and my family or boyfriend being in the room took a lot for me to process. People had to speak slowly, quietly and in short bursts for me to understand them and, on the worst days, I couldn’t understand them – it was like they were speaking a different language.

When I could speak, it was only very little at a time very quietly, and I could never find the right words. I could look at an orange and not tell you it was an orange, kind of how I imagine toddlers feel before they develop their language skills. I had to ‘prank’ people with my mobile phone if I needed attention as I couldn’t call out. I couldn’t tolerate much of any sense; touch hurt, sound left me paralysed, taste had to be simple or it made me nauseas, scents of any sort heightened all of my symptoms and my field of vision had to be very simple.

For best results, I would put a towel around my eyes so that all I could see as I lay on my back was my white roof. Looking at the clutter on my desk could leave me paralysed. On top of all this, I had another very classical symptom of Chronic “Fatigue” Syndrome; extreme insomnia. I obviously couldn’t leave the house for any reason and was confined to my bedroom for the most part.

It was hell on earth, I realise that now, but at the time my brain didn’t have the power to get upset. Any emotion, especially negative, heightened my symptoms and I was too weak to cry, so I had to remain calm at all times. A lot of my few words to others were, ‘Don’t worry’. As you can imagine, it wouldn’t be the easiest thing to see your daughter/granddaughter/sister/girlfriend/friend go through, but seeing them upset had more of a negative impact on my emotions than my actual situation. After all, there was nothing I could do.

The person I said “Don’t worry” to the most was my partner, Max, who sat with me for hours when I could barely move or talk and has stuck by me to this day. Max and I have been together over 8 years, but we’d only been out of high school 6 months before I got sick. Seeing my parents worry was always scary, but any hint that Max was worrying sent me into internal panic. Amazingly, although I know he did and still does worry, he never really showed it which made the whole process, especially at my lowest point, much easier for me.

The person that has had the hardest time dealing with chronic illness in a relationship is actually me. I’ve been riddled with extreme guilt about what we can’t do, and fear or what we might not be able to do in the future, because of me from the second I realised this illness wasn’t going to leave in a hurry. I got sick young, and at an early stage in our relationship, and we’re still only 23. Think of the couples in their early 20s you know, or what you were doing in your early 20s, and it becomes obvious the huge amount of things we can’t do because I’m sick.

Max has always told me that as long as I don’t give up on getting better he’ll be here and thankfully, by the end of 2007, little improvements started to show thanks to a treatment my Doctor, (still the CFS/ME Specialist), had put me on. Today, although far from healthy or able to live what most consider a normal life either academically or socially, I am able to do lots of things (including going out, going on weekends away with Max and write articles like this). I often say I can do everything except work, study, drive or have a ‘big day’, (in a physical or mental sense), 2 days in a row. Life is happier, both for me, my family and my relationship.

CFS/ME is a horrible, horrible illness that no one knows anything about and a lot of those who have heard of it are incorrectly ‘informed’ it’s psychological (I can’t scream ‘it’s not’ loud enough). There’s an awareness day, and ribbon, but nobody knows that it’s May 12 and blue. Not everyone suffers as severely as I do and did, but many people are far worse off for far, far longer (longest I know of is over 40 years). People have passed away from CFS/ME (Google Sophia Mirza or Lynn Gilderdale). There’s no proven cause or set treatment.

Most sufferers suffer in silence. Those who are very severely affected can remain feeling close to death, like the latest stages of cancer, for years on end and those who are not as severely affected, such as myself now, or better, look physically healthy and are questioned as to why they can’t do this or that and constantly have to prove they’re sick, often being accused of lying, being a hypochondriac or being dramatic. I’ve had people tell me they’re tired too so they have a bit of CFS/ME. Needless to say, nowhere near the same.

I don’t really have a conclusion. I don’t really think I will until people know what’s happening to millions of people around the world suffering from this horrible disease. All I can hope is that with each article I attempt to get out there, each you tube video I make and each person I talk to, one more person knows.

The only thing I ask of anyone who has read this is to tell someone about it tonight, or tomorrow at work or on the weekend on your way somewhere in the car – anything. There is plenty of CFS/ME awareness stuff out there on the web, but generally it has to be searched for, and the only people that really look are those who have it or know someone with it.

Hopefully a few extra people know about it now.