Management of The 'Real World' is

no longer a Secret

managing cfs

Activities - Friends & Relatives - Travel

managing cfs

Any activity needs to be considered very carefully. It seems a common pattern with CFS/FM sufferers that we take on too much in a flurry of activity when we have a little extra energy only to crash afterwards. Despite evidence of some optimism in this behaviour, it is not helpful - we generally lose significantly more in the crash than what we gained in the activity.

- from introduction to Activities

 

This is an area fraught with emotions and expectations with great potential for misunderstandings – if there were weaknesses in relationships before CFS/FM they are bound to be further tested by this illness. If bonds are strong and honest openness is the norm then little may change. We are talking human nature here, so do not expect people to behave as you would wish or even as you predict!

- from introduction to Friends & Relatives

 

Simply getting there can be totally exhausting. If you arrive to find that your room is unsuitable for sleep, chemicals are widely used, food served is full of preservatives, and your host has a full social calendar organised you are in for a very rocky experience!

- from introduction to Travel

"These are the things I wish someone had shared with me"

- Anne, Author

Selections taken from this book

If holding a book is physically tiring or reading is uncomfortable, ask your local library or bookshop about audio books as these are published at the same time as many hard copies. If you have a PDA or other suitable electronic device, download a reader program and reading material from the Internet so you have it available to you in a small, light, portable format.

 


Explain your situation as best you can – often this is really difficult as in the earlier stages you will not know a lot yourself. Use the writings of fellow sufferers to describe what it is like to suffer with CFS/FM or to explain your needs. If your own story or condition is different, consider writing about it clearly (and not too long!) so there is less room for misunderstanding, or for your debility to be misconstrued. If the fog of CFS/FM is upon you, your vocal explanation may be totally incomprehensible!

 

Ensure you take all your medications and supplements with you – it is likely that you will actually be in greater need of these away from your home environment unless it is a relaxing holiday. I pre-pack my supplements, each day’s allocation separately, into small press-seal bags. This saves much worry about remembering and keeping track of what I am taking while away, and reduces packing space as I only take what I will consume. There are many styles of specific containers for allocating and storing medications or supplements available through pharmacies.

Symptoms

'Real World'
Activities
Friends & Relatives
Travel
Create Energy!
Diet
Supplements
Exercise (CFS/FM Style)

stress, immune, digestion

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