Navigating adolescent CFS

Thankful Thursday May 9, 2013

Filed under: General — parentingcfs @ 3:52 am

In no particular order, today I am grateful for: (apart from the usual 2 arms 2 legs etc!!)

– an unseasonably warm, sunny day in Melbourne

– my supportive, self-disciplined and generally awesome husband and the fact that he has been at home much more than usual

– the way our amazing 11 year old son has calmly accepted that dairy is causing him problems and is carefully avoiding it without me having to expend any more energy on cajoling him (I think I may finally have the impetus to quit sugar…if he can do this when he loves milk, I can too)

– the way my daughter happily occupies herself for hours at a time and likes time without me (gives me a freedom that I would miss badly if it weren’t the case)

– the fact that my daughter is still doing well on midodrine and managing to get out most days (yay yay yay yay). Just hearing her well enough to have a shower right now makes my heart lift a little

– the wonderful primary school my kids went to who have been nothing but supportive and are running a fundraiser next Monday organised by my son

– the supportive head of junior school at my daughter’s high school

– my family and friends who listen and make me feel that I’m doing the best I can parenting this $%#&* illness, make me laugh and understand. You know not how important you are!

– the new friends I have made who are also parenting/living with this illness. Wouldn’t be without them.

– the fact that we were able to tell our son that scientists and doctors worldwide are working right now to work out how to stop his legs from hurting all the time and stopping him playing sport.

– ┬áthe delicious sweet potato mash with lentils and Japanese dressing that I just ate for lunch!

– the fact that I was eventually able to pick up a 3 month supply of midodrine yesterday despite initial refusal at the hospital pharmacy even though doctor had recommended. Going monthly has been a pain in the patoozie. Big win. Sounds small but big deal for me with current life logistics!

– Facebook! (location of many friends I would otherwise not catch up with at the moment and also others going through similar problems with children’s health)

– the family members who feed us on occasion, dietary requirements and all… so grateful for meals I don’t have to think about myself!

– good tv!

– the lovely blue earrings my husband gave me for our 20th wedding anniversary last December!

– and last but so definitely not least, the people worldwide who are not giving up on solving the puzzle that is ME/CFS

Lots to be grateful for huh?! What about you?

On with the day. One moment at a time.