READER REPORT:

Chronic illness made me a zombie

LYLA ARTHURS
Last updated 05:00 09/06/2014

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Living with an invisible illness

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I've been struggling for several years now with one invisible illness after another.

For ten years I fought with doctors to get them to listen to me that there was something wrong.

I was certain that I had endometriosis but they kept telling me that it was just really bad periods and I should just suck it up.

It wasn't until my mum was diagnosed with endometriosis after a hysterectomy, and she threatened my doctor that she would go to our local MP, that I was taken seriously.

After all those years of pain it was discovered I did indeed have endometriosis.

After the endometriosis was eradicated from my body through a serious of treatments, the pain and exhaustion remained.

Specialists came up with the theory that I now had chronic pain syndrome due to the years of pain my body had experienced through untreated endometriosis.

They were treating me for that disorder but it just would not go away or improve.

I was managing to work part time and my doctor and specialists kept telling me the only way to beat CPS was to get on with life and face it head on.

So I did exactly that. I got a full time job in April last year and I was full of hope and optimism that I was going to beat this and learn to live with it.

By July I couldn't get out of bed. I was beyond exhausted to the point that I couldn't even lift my head up from my pillow. The pain was excruciating, with all over body aches.

It constantly felt like I had the flu as my throat was sore, and my glands were coming up and down faster than a yo-yo.

I felt defeated because I didn't know what was happening.

I'd been promised that things would improve and yet here I was, more of a mess than ever.

In a few short years I'd gone from studying at university and juggling three part-time jobs, to a complete zombie who couldn't get out of bed.

I felt like I was going insane because my once sharp mind was beginning to fail me. I was even forgetting how to spell simple words, which, for someone who is a writer, is absolute devastation.

It was at this point they realised after testing that it wasn't Chronic Pain after all. I in fact had Myalgic Encephalomyelitis, otherwise known as Chronic Fatigue Syndrome.

Like many others out there that suffer from this condition, I'm not a fan of the term 'chronic fatigue', due to the connotations that this means we're simply more tired than most people.

If only it was that simple and didn't include excruciating pain, cognitive delays, brain fog, sensory sensitivity, anxiety, headaches.

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The list goes on and adds up to only one thing, debilitating.

The worst thing is the lack of understanding, those who don't think before they speak. If I had a dollar for every time someone said to me "Yes I'm tired today, too", I'd be a rich woman.

I live my life with constant exhaustion that stops me from being able to carry out a normal life.

My mind feels like it's trapped in a sea of treacle most days. Recalling simple information is a battle and most days I feel like my entire body has been run over by a fleet of buses.

Yet, you can't see that, so you assume I'm not sick.

If I had lost a limb or had scars and bruises I would get more sympathy and understanding.

This is the society we have created and it needs to change. We need to learn to be less ignorant.

We need to have understanding and we need to be sensitive to the plights of those around us, no matter whether it is obvious or not.

It's hard enough to put one foot in front of the other most days, to smile through the daily battle that we face.

Don't make it worse for someone. Think before you speak, because your words could either uplift us or bring us down.


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