Tips for living with ME/CFS

  • People with ME tend to be high achievers and push themselves. They also often put others before themselves. Now is the time to put aside perfectionism and also to learn to say no when it comes to others demands. It is time for you now.
  • Always get new symptoms checked out. Change Drs if they don't take your illness seriously. Call an ambulance if you really feel in danger with your health but if they give you the all clear take their word for it and pursue symptoms with your Dr. Sometimes a trip to hospital can cause symptoms to flare even more as they are noisy, busy places.
  • With a diagnosis of ME you will need to sit down and re-evaluate your life and priorities. Your health will now need to come first before all else, you cannot live round this illness. This may mean work changes, your family routine and your approach to life in general. Pushing yourself will worsen the illness.
  • Reconsider things like eg housework - clothes can be smoothed and folded, not ironed, and a bit of dust won't kill anyone.
  • Try and create a recovery environment - a place of calm, peace - the best environment conducive to well being and recovery.
  • There are times where you may feel a little better, don't assume you are recovered and try to resume your old lifestyle as this will result in a health crash.
  • Expect the typical "boom and "bust" of ME - where you feel more able so become more active, then you crash and symptoms worsen considerably. These energy fluctuations are going on at a cellular level. A pacing schedule of rest, relaxation and activity can help stabalize the illness.
  • Exercise will not make you improve, despite what any Dr tells you, exercise will give you post exertional malaise and can worsen symptoms greatly.
  • Expect negative comments and disbelief from friends, family and your Drs. ME is a physical illness yet unfortunately it is still believed to be psychosomatic by many. If necessary, have a prepared reply for unhelpful comments and don't be bullied into anything you don't want to do.
  • Do more of what is helpful and less of what is unhelpful. This also includes associating with helpful or unhelpful people.
  • Put together a "first aid kit" for the bad days - funny videos, comforting messages, easy cook meals, a phone number of a sympathetic friend, cards from friends, gentle and easy activities that you enjoy... write them down in a list if necessary or keep things together in a box.
  • When we are in distress our minds don't always function well enough to guide us to do the right thing. Keep a notebook handy of helpful reminders or encouraging messages to yourself that can comfort you in bad moments or prompt you to do something helpful or that you enjoy.
  • Turn to other sufferers for support, they tend to know more than the medical professionals about this illness and will know what you suffer. They also are a wealth of experience which they often share via blogs, YouTube videos, some have written books. Don't be afraid to approach them and ask for help.
  • Consider recovery stories with an open mind, it is always interesting to see how others have handled this condition and don't judge them or their illness. What may not work for one may work for another.
  • Calming our system is vital in allowing our body the best chance of recovery. We don't want to waste energy on stress. Relaxation techniques and Mindfulness are great tools in helping us to relax.
  • Rest, rest and more rest, especially when going through a bad patch. This may mean no TV, reading or other activities at certain times throughout the day, but also giving yourself enjoyable things to do and look forward to if possible
  • Break up all activities with periods of rest and relaxation, never allowing ourselves to go hours on end without a break
  • Try not to be consumed by the fear and distress. Snowball thinking - allowing worrying thoughts to run away with themselves, will drive panic and adrenaline through our system, hindering any repair and healing the body is naturally trying to do
  • Nurture your body, showing it sympathy and compassion. Not hating it for what it can't do but giving it the best nutrition and quality rest
  • Keep a meal powder drink available for days when you are unable to prepare a meal. See video section for suggestions
  • Cook in batches and freeze portions. Soups can be great for nutrition and fluid intake
  • Keep a kettle and tea making facilities in your bedroom to avoid going downstairs
  • Use paper plates, cups and bowls on bad days to avoid washing up
  • Baby Wipes or a damp flannel can get us by on the days we are too ill to wash ourselves
  • A commode in the bedroom is a great energy saving tool no matter how unromantic!
  • Ask for help. There is sure to be a friend who will help you out with washing, cooking etc otherwise the social services may be able to provide help
  • Buy healthy ready meals. M&S Stay Fuller For Longer are the best quality. Wiltshire Farm Foods provide free delivery
  • Drink lots of fluids, especially water
  • Keep muesli bars, oat cakes and other high protein, low sugar snacks by your bed (see video on snack bars for best quality)
  • Listen to audio books and chill out music. Listening to nature sounds will trick your body to believing you are actually in that environment, thus reaping the benefits of if you were
  • Make friends with your Doctor. Ask for phone appointments rather than go there. Accept they can't cure you but they can give you support. Provide them witn ME info if needed - The Voices from the Shadows dvd is a good educational tool.
  • Contact Citizens Advice Bureau or Welfare Rights (in the UK) for help with benefit claims
  • Join support groups/forums. Facebook has several ME groups and YouTube has a wealth of info and personal experiences of sufferers
  • Shop online and get things delivered
  • Don't believe everything you read about "miracle cures", there is no such thing, but do be open minded about treatments. Everyone is different and if others were made well by a treatment don't dismiss their experience as nonsense.
  • When the bad times hit don't despair, things will improve where you can get to a level you can cope. It is possible to recover with this illness or get to a point where you can live a good quality life
  • There is no test for ME. It is an illness which is diagnosed after everything else has been eliminated and the symptoms have gone on for more than 3 months.
  • Your Dr will do basic tests for organ function, Sjrogen's syndrome, and for other abnormalities but any more in depth tests need to be done privately which can prove very costly.
  • Please see our video page for more tips..

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