My illness 'stole my life'

Last updated 06:00 03/06/2014
ALL ALONE: There is nothing quite as isolating as experiencing Chronic Fatigue Syndrome - none of your friends or family will ever understand what you are going through.

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I live in constant fear. This sounds over dramatic but the reality of living for years and years with Chronic Fatigue Syndrome was horrible, just the worst thing I had ever experienced.

I had severe Chronic Fatigue Syndrome (or myalgic encephalomyelitis (ME)) for more than five years. Most symptoms have eased now, but I am constantly worried it will return. I am terrified it will come back and steal my life again.

I am very careful about over-extending myself, I can't stay up late or skip meals because over time that leads to the symptoms coming back, which is completely disabling.

I also can't over do exercise as any type of exhaustion sets me up to head back down that path. So even now my life is limited by the after effects and how I try to prevent this illness from taking hold again.

It all started simply enough, I received a minor head injury, that (surprisingly) gave me amnesia and a lot of ongoing short term memory issues. Within three months of this head injury I got glandular fever and the combination of the two was enough that I got Chronic Fatigue Syndrome and did not recover.

At first I didn't understand and I kept pushing myself, trying to work harder and do more, which lead to a complete nervous breakdown, eventually manifesting itself as a pseudo stroke.

What this meant was that I spent a week in hospital with no feeling in my right side. My right eye drooped, I drooled, my right foot still turns in a little to this very day.

What was really concerning to the doctors was that I couldn't feel a pin stabbed into my right foot (but certainly could on my left) and I had no reflex at all in my right knee (when the doctors hit your knee with a little rubber hammer - no response on my right side at all).

Eventually after MRI brain scans etc, they decided they had no idea what was going on, labelled it a "stroke-like" episode and sent me home when I stopped drooling.

The symptoms gradually got better over time, except for my right foot still turning in a wee bit.

After all this I was diagnosed with Chronic Fatigue Syndrome. The worst part was when my GP said this was not something with a cure, and I might have it for the rest of my life.

I joined a support group but never made it to any of the meetings - it was far too hard to get showered, dressed, drive there, socialise and then drive home.

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But the thing that really helped was the newsletters, the articles from medical experts helped me understand what was going on and what I could do to support my body's recovery as best I could.

Probably the hardest part in all this was trying to explain it to other people. I lost a lot of friends who couldn't understand why I wasn't getting better, why I couldn't go out and have fun and why I suddenly gave up alcohol completely.

Even the ones who tried to understand quite often thought it was all in my head, that if I tried harder I would be better.

The other thing that was really hard to explain was the constant pain I was in. My joints were all incredibly painful, my muscles were always agony and in huge knots - it felt like my very bones ached constantly.

Because none of this pain was visible, no one could really believe it hurt.

People mean well and tried to help, offering helpful suggestions. I had one friend who thought that if I just got up early at 6am I would feel better because it was all the lying in bed that was causing the problem.

In reality the lying in bed was due to the problem of being in absolute agony and exhausted.

I also forgot everything. I remember I once drove for 30 minutes in the wrong direction before realising it was the wrong direction. I once drove to my grand-mother's house, which took an hour, and once I got there realised I was meant to be going somewhere else.

I lost friends who didn't understand this "brain fog". Once when I had double-booked myself and was out of town with my family I got an abusive phone call from a friend who thought I had blown her off on purpose. When I explained and tried to say sorry she hung up on me. I was in tears by this point.

The hardest part of an invisible illness is the complete isolation. None of your friends or family will ever understand what you are going through.

Complete strangers will judge you for being "lazy" when you go to the doctor's office in your sweat pants with unwashed hair, not understanding that if you had showered, washed your hair, put on make-up and dressed nicely you would be too exhausted to get to the doctor at all.

Even the ones you love will wonder if you are exaggerating, or if it's all in your head sometimes because they will not see any evidence to support what you say. You feel so very alone.

I am still absolutely terrified that it will come back in force.

I am terrified of a relapse. That I would lose my job, my independence, end up on the benefit again without enough money for healthy food or the medications needed.

It is the most terrifying thing, knowing that it could come back.

I really hope it doesn't.

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