M.E. Symptoms and Management by Ann Jones.
The worst symptoms for me are:
- Constant fatigue and exhaustion – heavy, achy head and limbs.
- Brain Fog – affecting concentration, memory, organisation, sometimes comprehension and speech. At times I find it difficult to translate intention into action.
- Tinnitus, intrusive and pulsating.
I feel faded in a world of colour – progressively washed out – wiped out – crushed. I don’t take any medication for M.E. and I’m wary of drugs.
Tinnitus got much worse when I tried citalopram. I take thyroxine for a hypoactive thyroid but achieving and maintaining the optimum dose isn’t easy. Not enough and the exhaustion is much worse, too much and I get a rapid heart rate and feel slightly shaky.
Paracetamol and rest with eye mask helps headaches. Rest, hydration, sometimes food can help with brain fog. I sometimes like a radio playing quietly as a distraction.
I get a lot of help from my husband who can sometimes tell before I am aware of it that I need a rest, and he gets on with meal preparation etc.
Tips and Advice
Managing energy is the most difficult but important factor. My advice would be to try to establish a routine to get the best balance between sleep, activity and rest, though adapt and be flexible when necessary.
Learn to recognise any signs of worsening symptoms and don’t feel guilty about resting. A useful analogy is that of an old mobile phone with an inefficient battery.
It can’t take a full charge, runs down quickly and the lower it gets, the longer it takes to recharge. It is best to keep it topped up i.e. have regular, frequent rests.
Also learn to recognise trigger factors, e.g. getting too cold or too hot, dehydration, not eating enough – or eating too much, doing too much, being in a busy, noisy place, being engaged in conversation too long, talking on the phone etc. It is a fine line to walk.
- Complete inactivity has its disadvantages so gentle exercise within your energy envelope, in small amounts is best.
- Have a ‘tool kit’ prepared for a flare-up, e.g. time in a quiet room, with music or books, a drink, eye mask etc.
- Learn to relax, breathe, meditate, practice mindfulness, all of which can help with stress.
- Keep in touch with friends by whatever means. Isolation and loneliness can make the situation much harder.
- Appreciate the little things: nature, small kindnesses etc.
- Remain optimistic, remembering the team of committed researchers working on our behalf.
ME Awareness Week Monday 11th – Sunday 17th May 2020
The ME Association
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