There is a mother of a 12 yr old CFS lad at another site I go to.. seeking advice over CFS in children. Im wondering what you wish your parents were told about dealing with this and you, when you were younger.
If you have any advice to give on the topic of having CFS in childhood.. I'd love to pass it on to her.
I wish i had been encouraged to keep in contact with my friends more somehow (email/etc), there were many a lonely night where i wish i had someone to talk to outside of my family.
It took us about a year to come across a CFS specialist who i think is actually world renowned (Professor Lloyd), who told us to stop taking 24 pills a day, and 1 injection (vitamins and supplaments mostly). Who said that just about all that stuff doesn't help your cfs, although it may help some other underlying problem. So it would have been nice to know that from the beginning.
It would have been nice to not having been made to feel guilty for missing things, such as school.. which was usually a constant battle. So if they were made aware strait off the bat how severe it actually is, i think a lot of heartache (for both sides) could have been avoided.
I personally found it very hard to communicate my feelings, so my friends and family had very little idea as to how i felt physically or emotionally. Perhaps to say that just because he seems fine, he may not actually be at times.
Also my parents pushed too much, which exhausted me. But if they didn't try to push me forward at all i probably would have never tried to improve. So i guess there is a middleground that must be found. Also be aware that he may feel like hes letting you down if he think you have expectations of what he should be capable of.
That can't be everything, but im having a total brain block at the moment, i hope that helps though. <3
thanks so much for that Tom… i’ll pass what you said onto his mother. She’s a sole parent of three… so really must have her hands full.