Sunday, September 09, 2012

Update on College Life with CFS

Oh,'s been ages since I've posted anything here AGAIN.  Sorry about that.  Even though the kids have been back to school, I have still been overloaded, battling a crash, plus a lot of running around because my younger son, Craig, hurt his knee (again) during the first week of soccer practice - doctor's appointments, MRI's, running medical records all over town, trips back and forth to school, etc.  Plus, my husband has been away for a week so I've had to get up at 6 am every day and do everything on my own.

Anyway, lots of you have been asking how Jamie is doing away at college (thank you for thinking of him!), so I thought I could maybe squeeze in a quick update.  Oops...time to get dinner ready...

OK, now that update...really...

So, Jamie has been in college for two weeks now, and things are going really, really well so far!  He is only taking three classes, and he says that is definitely helping.  He says cognitive functioning has been pretty good - perhaps some of his new supplements are helping (more on that complicated situation in another post).  Three days of the week, he only has one class, at 9 am, so he can rest for the rest of the day.  He has a single room, so he can still go to bed early - I think around 9 pm most nights (definitely NOT the norm for most college students!). 

Cool Gel Mat from Solutions catalog
The heat these first weeks has been a challenge for him because none of the freshman dorms are air-conditioned, and the buildings (and their electric systems) are so out-dated that personal a/c units are not allowed - students can't even have a fridge and microwave both running at the same time!  His dorm room is tiny, with just a small window and little breeze since it opens onto a courtyard.  He said his second week was made more bearable by the Cool Gelmat I ordered for him from Solutions catalog.  And, as of today, the temperature has finally cooled off here!  It's supposed to be highs only in the low 80's this week and lows in the 50's and 60's plus much drier!  That should help him a lot.

The high points?  He says the best things about college are the freedom and being near his friends all the time.  This poor kid has been practically chained to the couch for the past 18 months, mostly housebound and isolated.  Another benefit of going to college here in town (he's 20 minutes away) is that lots and lots of his friends are there, too - kids he's been friends with since preschool in some cases!  Best of all, his two closest friends - best friends since kindergarten - are there with him, each just one dorm building away.  So, he says, he loves being able to hang out with friends every day; even if he's not feeling well, he can spend a little time with friends in between resting, and he eats his meals with his friends every day.

For now, he is coming home at least once a week, on Sundays, so that I can refill his weekly medicine boxes (6 of them completely full!) and give him his B12 shot.  Last weekend, a 3-day holiday weekend here, his grandparents were visiting from out of town and it was incredibly hot and humid, so he slept here four nights in a row and spent a fair amount of time with us, but he still had the energy to drive back and forth to campus on Saturday and Sunday to spend some time with friends, too.  He was badly crashed on Monday and Tuesday (probably too much Frisbee with friends Saturday evening!), but he went back in time for his first class on Tuesday and says he felt better by Thursday morning.  This weekend, he only came home for a few hours today!  Just long enough to eat gluten-free pancakes, do laundry, let me refill his meds and give him his shot, and take a shower in his own private bathroom!

It is great to see him so happy and full of life after this long past year of suffering!!  It really feels like a miracle.  His stamina is still quite low, and we have a long school year ahead.  He says everyone in the dorms is already getting sick, so I sent him back with antibacterial wipes and hand sanitizer today!  Even in his very best years (and we are far from those), he still missed 25-30 days of school, usually in 1-2 week long crashes, so we know that is ahead.  But, he is making a good start and for now, he is happy and enjoying himself and being an almost-normal 18 year old, which is far more than we expected a few months ago!

Jamie (in gray) at home last weekend, enjoying a card game with us and his grandparents.


  1. Wishing Jamie and your family continued progress! Its a long rocky road - but I am sure Jamie like most of us with chronic illness we find the gifts - compassion - empathy - and hope - sending you continued love ! Congrats Jamie

  2. Great Sue, fantastic to hear Jaime is getting a decent taste of collage life and independence while still being close to home. You've done so well to support him and give him the best shot at it, I'm glad all your hard work and heartache is paying off. :) Well done!

  3. Anonymous2:00 PM

    Hi (S. Jackson)Can you please provide an email address. I have tried the ones on your website and cant make them work, thanks, Alan (maybe its my Firefox)

    1. If you would like to e-mail me, click on "view my complete profile" in the left sidebar. There is an "E-mail Me" button on my profile.

  4. This is really great news. I hope it continues. He certainly deserves a decent year after the one he just had.