living with m.e.

Dawn Marie writes:

As a nurse, I was always very proactive, never still, ambitious and full of energy.

But after a while, night shifts and long day shifts began to take a toll on my health, my energy began to lag and my digestive system was awful. I contracted a severe virus while working at the hospital, my health really deteriorated and finally I couldn’t work.

I was at the point of collapse. I developed ME/CFS.

What is ME/CFS?

Myalgic Encephalopathy, sometimes known as Chronic Fatigue Syndrome, has a number of symptoms, including:

• Extreme fatigue that doesn’t improve after rest
• Cognitive impairment
• Brain fog
• Memory problems
• Flu symptoms
• Sensory impairment (intolerance to light, sound and odours)
• Dizziness and feeling lightheaded or faint
• Anxiety
• Vasovagal syncope (a reaction to certain triggers, resulting in brief loss of consciousness)
• Orthostatic intolerance (symptoms when standing which are relieved when you sit down)
• Hypoglycaemic episodes
• Pain in joints and muscles
• Blurred vision
• Sore throat
• Neurological symptoms (such as feeling like walking on rubber)
• Clumsiness
• Insomnia
• Jittery sensations

Living with ME/CFS

It’s not easy. Life is not as it was. For almost nine years I’ve been mostly in the house trying to recover my health.

You may know what this illness entails and if you do then you’ll be aware of how debilitating it is and what a huge impact it has on quality of life.

Each day is different, every hour is different and I could even get that down to minutes.

Why?

Because ME/CFS is tenacious and it likes to keep you on your toes and surprise you often.

My main battle is with energy. Can you imagine life with little to no energy? Add to that pain with almost every movement you make (especially in hips and wrists, for me) and a dollop of confusion, memory loss and dizziness. Oh and not forgetting the feeling of having the flu.

This is what happens regularly when I’ve done something different and used up too much energy in one go.

I have to try to pace my activity during the day.  If I don’t then I’m in a pretty bad way for the majority of the time. Pacing helps but it is not a cure. Up to now there is no cure.

I try to switch activity often so as not to deplete energy from one source. I need to try to do no more than 80% of what I think I can do, in order to leave some fuel in the tank.

This means that I can’t do physical or mental activity for too long and importantly (very very importantly) I need to rest in between the activities. And by activity, I mean reading or washing up, going up the stairs or conversing with someone.  Any activity saps my energy fast.

Some days are better than others.  ME/CFS fluctuates randomly and sometimes predictably. For instance, if I have a wedding to attend or an unusual outing I can guarantee that sometime between 48-72 hours afterwards I’ll have payback. 

You have to be prepared to accept the consequences for doing extra to the norm. Sometimes life happens and other stuff is unavoidable and sometimes I just think ‘what the hell, I have some energy and I’m going to enjoy it’, but when payback arrives it is horrible, truly horrible.

Payback can last from weeks to months and I’m literally housebound during that time. I’m in the house the majority of the time in order to pace myself and be within my limits.

I’ve tried numerous treatments and supplements.  I’ve tried therapies and exercise (stupidly as I relapsed severely).

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