Well, it’s been a full on week here in CFS land, both personally and on a research level.
Firstly, our girl has been crashed all week after getting to her school fete last Saturday and a Year 6 competition day Sunday. She understands her illness well enough now that she knew she was going to feel sicker if she attended the weekend events but she was determined to do it. The fete is always a highlight of the student calendar and, whilst she didn’t get to run around like a maniac as in previous years she did catch up with friends, do some activities and make some purchases. From an hour after we arrived she would come back to see me at the stall I was helping with and say, “I don’t want to go home.” Pretty clear her body was telling her one thing while her heart told her another.
Sunday’s activity was a solar boat racing competition. It was because of this team competition that our girl’s routine has involved Thursday and Friday afternoons at school, as this has been when the groups were working on making their boats. Our girl’s group of 4 seemed more interested in their costumes than the actual engineering aspects but they sure fooled us as, in the end, their boat got through to the top 16 in the state. Very exciting. Then, to make the exertion of the day even more worthwhile, their poster entry won them an invitation to write a 500 word essay to win a cash prize! Their faces were comical as they heard what they’d won but the idea of cash seemed to impress them! As our girl was the main author of the poster (and I remember the effort it took her to put it together coherently, vividly) this was a lovely confirmation for her that the quality of her output is still fabulous even though she hardly ever writes extended pieces anymore……….
Anyhow, not sure if the essay will get written since, as I mentioned, the price for all this activity has been a huge whack of exhaustion, increased nausea and headaches and school has not been on the cards. Thankfully we are about to embark on a 4 day weekend due to that most Victorian of events…the Melbourne Cup! Tonight, at dinner, our girl breathed a sigh of relief and said, “I’m so excited.”
Upon enquiry she elaborated, “Because I don’t feel guilty about not being at school.”
I replied, “That’s great. You shouldn’t feel guilty. You’re SICK” , breathing a sigh of relief myself that she was finally going easier on herself.
“No, no,” she said, ” because it’s the WEEKEND.”
Aaagh. Poor sweetheart. I’ve tried and tried to make being at home and not school as natural and comforting as possible and yet still she tortures herself with what she SHOULD be doing….
Anyhow, and I can see this is going to be a long post – apologies, my CFS week has been dominated by two other new developments. Firstly, in exciting news, Norwegian doctors have had a breakthrough with a cancer drug that seems to have helped a significant percentage of CFS sufferers in a recent trial. You can read about it, if you haven’t already, on the Research 1st website. Any news on probable treatments is extremely welcome as I am ‘meeting’ more and more people whose lives – and those of their families – have been severely blighted by this illness.
Which brings me to my last main bit of news. The wonderful Sue Jackson, whose blog Learning To Live With CFS is simply the most fabulous source of information, has set up a Facebook group for parents of kids with CFS and it’s been wonderful (and sad) meeting many other great parents who have become dedicated carers for their teenage and adult children at a time when our children would usually have been branching out and moving away from us. This group of motivated, caring and supportive parents is a beacon of light in a fairly lonely world and if anyone reading this is in need of support as they parent their CFS child I strongly recommend clicking through to Sue’s blog above and joining us.
In related news, I’d like to make special mention of a parent called Jo who stumbled upon my website whilst searching for anything on adolescent CFS and wrote many lovely comments on my blog in her excitement at finding someone going through something similar to her. I was able to point her in the direction of the support group and she is a very welcome addition. Jo’s arrival warmed my heart… I too stumbled around in a wilderness of no information for a while and it is one of the reasons I decided to blog. Hope your day is going as well as can be expected, Jo. : )
So that’s the week that’s been. Ups and downs just like everybody else. Any news in your world?