Coping as a Sufferer
The first step to coping with these illnesses is to understand that to take control of your illness, you must take control of your life.
Try to establish a regular day-to-day routine, with set rest times and bedtimes that allow you to get as much sleep as you need.
Learn to pace yourself. If you are going out in the afternoon, rest in the morning. Try to plan ahead, and don’t do too much in one go.
Learn to say “No”. Unless you tell people that you are not capable of joining in with an activity, they may not realise how ill you feel.
Accept that sometimes needing things like walking sticks, bath-seats, extra handrails and wheelchairs is nothing to be ashamed of – these are just tools that can help you in your daily life. As an invisible illness, using such a tool may help others to realise that you are not well.
Listen to your body.
Don’t be afraid to ask for help. The people around you care about you, and you don’t have to stand alone.
Coping as a Carer
As a carer of someone with ME/CFS/PVFS/FMS, you will learn very quickly that they have ‘bad’ days and ‘better’ days, and that the help you give will need to take many forms. You will need to have patience and understand that the person you are caring for may feel awkward about asking for your help.
Don’t ask too much of someone with ME/CFS/PVFS/FMS. Visiting “just one more shop” can take them over the edge to exhaustion, even if they are in a wheelchair and you are doing the legwork.
Allow the person to remain in control – for example if they are in a wheelchair, they decide where they want to go, you must be prepared to be “a continuation of the wheelchair”, to enable them to move. Do not answer for them in a shop unless they ask you to – you are just the engine of the chair.
Don’t get too frustrated when you have to repeat something – many people with ME/CFS/PVFS/FMS find it difficult to take things in quickly, especially if they are having a bad day.
Remember they are still the same person and they, like you, are learning to cope with the changes in their life. Allow them space to stay in control.
Carers should not be afraid to ask professionals for advice about how to deal with the practical side of caring, such as how to lift someone out of a bed or wheelchair safely. A local Carers’ organisation will be happy to help.
Don’t forget to take time out for yourself, as you can be affected by stress as well. Your GP should be aware that you area carer – and carers need to be healthy to do their role of caring. Make sure for example that you get your ‘flu’ jab.
There are a number of organisations available to people with ME/CFS/PVFS/FMS, and their carers, offering information and support. For details, go to the “Helpful Links” page.