DISCLAIMER: The following post contains anecdotal information and my thoughts. It is not meant to reflect medical advice pertaining to any other person.
I’m absolutely thrilled to be able to tell you that our girl is back at school for 3 hours, 3 mornings a week. We are terribly, terribly proud of her and her determination but as we know too well no amount of determination would get her there if she hadn’t had enough improvement in symptoms.
Very difficult with this illness to quantify change but I’ll try!
What has changed?
-much less nausea
-slightly more energy
-less light sensitive (no longer lives in a darkened room)
-able to concentrate for around 20 minutes on written work. Sometimes 30.
So this post is about what, other than prescription medicine, appears to have helped our girl back onto her feet. Literally! These are in no particular order.
1) A large amount of self- determination. ie; me letting go as Mum and allowing her to decide what she could do, when. Forgetting about other people’s expectations. Accepting that ‘the norm’ for our child was not ‘the norm’ for everyone else.
2) Not always allowing her to be in charge. Yep, complete contradiction to the first one. Welcome to my constant second-guessing world!!! I know all you other carers out there know exactly what I mean. There are times when some firm encouragement is needed. Knowing when is not easy. As I’ve mentioned in previous posts I would invite a friend to visit without telling my girl this friend was coming. When she was at her worst if she had known she would have vetoed it. The anticipation of energy use would have drained her before she even got to the energy use she was worrying about! But keeping in touch with friends was very very important in the long game and that was what we were playing.
3) an excellent naturopath
4) an excellent psychologist
5) an excellent cranio sacral osteopath
These three professionals have played a very important part in our girl’s improvement to date. Not least because they were other adults she could talk to/rely on other than family.
6) our wonderful extended family. You know who you are. Thank you xx
7) our friends. As above xx
Our girl at her worst had no energy for different environments. But familiar places that she had visited many times with familiar people were occasionally doable and these outings, usually to dinner at family and friends’ , were literally sanity-saving. For all of us!
8) Good food and frequent small meals. Adequate hydration. We were not a family that ate much processed food. We did eat a lot of gluten. Our girl appears to be better on a low gluten diet…though I don’t know if it’s even possible for that to make a difference. We buy organic if at all possible and have cooked breakfasts most mornings. Greens are present at every meal..unless there’s blueberries. Then it’s blues! Dr Terry Wahls Protocol has been my baseline. If you don’t know about it, check it out.
9) Peppermint tea. Great for nausea. ’nuff said. ;)
10) Heat packs. I knew nothing about just how useful these could be for aches and pains until my child became ill. I lurrrrrrve them now.
11) Music. Our girl has listened to hours of music everyday since becoming ill. It has made life worth living for her.
12)Fun. Wherever and however possible. Laughter as medicine. Sometimes very black, very funny humour. We would have been lost without it.
13) Clothes shopping. See above. For about 12 months it was just about the only kind of fun she could handle. Go figure! (A complicated biochemical cause I suspect!) Luckily I don’t mind an hour or so at the mall so this was a way we could have fun together for the long period when she could only be on her feet for brief periods. It was the only exercise she got
14) Supportive schools. We have been extremely blessed with both the primary and high school. Our girl knew she was supported by all and that they understood just how ill she was and would not put pressure on her. Priceless.
15) Other parents’ experiences with their child’s illness. I have been lucky enough to be in communication with many wonderful parents who have given me all sorts of tips that have helped. Thank you.
16) Rest and time. The first was crucial. And yet often had to be balanced with some movement. I can’t explain to you how difficult that can be. The latter is the unknown. Our girl’s growth rate has clearly slowed. She is a 5 ft 9 beauty at 14. Perhaps her faulty vascular system is catching up a bit and leading to improved blood distribution and hence health? Ah, one day we will know the answers…
That’s all I can think of for now. Wouldn’t it be wonderful if this was my last post because things just continue to improve?! I sure hope it is. To all of you out there who have shared our journey, thank you. To those of you who are fighting a daily battle with this illness that has compromised your child’s life, you are amazing. To all, good luck and the wisdom to be kind to yourself.