You have to live a different life which is not so physically or mentally active.
Always ‘pacing’ (ie resting to conserve energy in order to do something, then resting afterwards)
Leg dragging when walking due to fatigue.
Giving up work and the fulfilment that comes with doing an enjoyable job.
Infection, I seem to pick up anything going.
Consultants, GPs, A & E, tests, operations, too many of these.
Electric type surges of massive tingles shooting down both legs.
Numbness in tongue, head and feet.
Changing the way I do things from energetic to slow or not at all.
Ever-changing symptoms from brain fog (difficulty thinking straight) to pain.
Photosensitivity to lights, TV, laptop screen.
Headaches which last days.
Assistance needed and adapting everyday tasks
Loss of balance, spells of bad vertigo
Overwhelming fatigue after doing ordinary tasks which then take days to recover from.
Mobility, coping with stairs, inclines, uneven ground, less stamina – all are now beginning to improve for me after years of gentle swimming and walking.
Yes it is a real illness with life changing effects, despite the fact that we can look well and normal.
Eyelids droop especially when fatigued; people say that I look tired.
Leg giving way causing me to use a walking stick for over two years for support.
Insomnia, due to muscle pain, restless legs and not feeling refreshed after a night’s sleep.
Increasing memory problem and difficulty thinking straight.
Shaking visibly down my left arm which was distressing for me and my family to witness.
With help from a kind and loving husband and family I am now at a stage where with careful pacing I am able to live a more normal life. I have embraced a quieter, slower pace where I enjoy all that I can do and I really take time to smell the roses.