Having ME is a bit like a not so “lucky daily dip” every single day. The dip being in not knowing which symptoms are going to emerge for that day or over several days.

Generally symptoms come and go within hours or over a few days, but for me generally not for longer periods of time, although at the end of last year I had a 10 day bout of brain fog and laboured breathing.

The symptom that most people are familiar with is fatigue with this being one of the myriad of symptoms but for a while ME was known as Chronic Fatigue Syndrome. However, ME hosts a huge range of different symptoms from brain fog, muscle pain, sensory distortions and overload from noise and light to even seeing activity being too much, flu like symptoms, brain pain / ache, slurring, weakness, etc. etc.

Along with muscle pain my early memories when I became unbearably ill with ME now 10 years ago are of fatigue.

When I try to explain fatigue people think it is a bit like a few late nights, and feel they can sympathize with that. However, this is an all encompassing and totally overwhelming fatigue that you know you cannot fight.  If you do fight it gets worse.  “Respect my fatigue” is a much better attitude to take.  This is not giving in, but acceptance of a reality.

I think fatigue and muscle weakness can and do overlap one another. Two weeks ago I had several days when my muscles were extraordinarily weak.  Sitting up was too exhausting so I had to stay in bed or use pillows and cushions on the sofa.

Overwhelming fatigue makes your limbs feel like lead, as though you are wading through thick drying cement.

There can be cause and effect in that lifting a heavy object, lifting shopping in from the car or shifting a piece of furniture all can easily be cause with guaranteed effect. The effect and consequences can be immediate or within the next few days.

At present I am fatigued but not to such a state that I cannot do anything. My lungs feel heavy and if in bed I cannot lie on my side but only my back as these makes it feel easier to breathe.  An evening or lunch time of chatter can exhaust my lung muscles.

I was once at the river when Chris was away with the dogs and the power chair needed a shove with me stupidly ending up in some mud. The shove to get it out hit me immediately, sort of similar to being winded but with it not going away.

Fatigue is usually throughout my body. I frequently wake up with it and can feel sort of surges of fatigue in my blood.  If it is a good fatigue day then I will be able to just keep sleeping, good in that I can make myself feel better by escaping into sleep.  On a bad fatigue day my body feels wired but totally exhausted.  That is grim as there is no escape through sleep.  Rest, rest and yet more rest is the only solution as pushing my body just makes it worse.

“Emergency” adrenaline is one of the few things that may overcome the fatigue temporarily. Last week I woke up at about 0700 to our house alarm going off.  My mind was trying to figure out what to do i.e. if there were intruders then were they in the garage or in the house and maybe it was best to just call the police, but my brain also fairly quickly realised that it was not the house alarm but a smoke detector actually set off my shower steam via our lodger.

This was an occasion that adrenaline kicked in with reacting to the alarm appropriately and then needing to stop the noise once I knew it was safe. Backlash guaranteed a few days later.

Exertion for someone with ME includes mental, physical and emotional use of the body’s energy. As I wake up each day with fatigue it is a matter of working out what sort of day it is.  Approximately 2-4 days a week I am bed / sofa bound where I have little energy and need to rest.

A good day is when I have 2-3 hours of energy, but with limits. I can on occasion meet a friend for lunch but know that after 2 hours I need to get back home to rest.  If I do not pay attention to the “Cinderella” deadline then the payback will be worse.

Not all bad days are predictable. The ME fluctuates within itself.  I can never work out if this is good or not.  With symptoms such as severe nausea and muscle pain, it is a relief to have variety, but obviously mild symptoms you can ignore would be much much better.  So I try to stay positive and think a bit more of a pot luck attitude with the excitement of not knowing what will happen next!