Living with ME

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

Woman looking very tired

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.

What is ME?

Myalgic Encephalomylitis (ME) 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

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 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 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).

This is my life at present. I remain hopeful and optimistic for the future but it’s a very difficult existence. It seems cruel and unfair.

Find out more…

ME association - article

 

 

ME article

 

About Dawn Marie

I'm passionate about health and wellbeing. I am a Paleo woman and love that it is a lifestyle rather than a diet. I adore sunshine and smiles. I have a strong affinity with mountains, they are awesome and very grounding. I'm a writer and have two novels in progress. If I was granted wishes I'd hope for more energy along with a host of other stuff that you can probably guess. I grow wiser with each year and one day hope to be a proper wise woman.

  • Excellent article Dawn Marie – thank you so much for sharing!

  • Thanks so much Deborah and thanks a lot for raising awareness too. Sorry for late reply, I’ve been struggling with severe fatigue x

  • Great article raising awareness of an illness that sucks!

    I’ve been told (by a GP) that I have ‘ME symptomns’ but not actually given a diagnosis. I am mostly fine – if I do have it, then it is only mildly – but there are days when I feel dreadful, and today was one of them.

    I have a very close friend, however, who suffers daily.

    Thank you for sharing, and I hope life brings you more sunshine and smiles than payback!

  • Jeanne Ellin

    Wasn’t on henpicked in 20 15 so missed your excellent article first time around. Very similar story a I too am an ex nurse ‘managing’ the tightrope walk that is living with ME. Wish you well in your ongoing challenges