I just don't have the mental energy to write a flowing, cohesive blog post tonight, so how about a rambling, disjointed one? (it just took me 10 minutes to think of "disjointed").
Another really exhausting week here, and Jamie and I are both in rough shape today. These last two weeks before school starts are packed full for us, mostly with medical appointments, including several out of town. So, this week, we started Craig's physical therapy (old knee problems we want to tackle before soccer season), got up early for Jamie's annual well visit, and drove to NJ and back for a visit with our Lyme doctor.
It seems that Jamie reacted badly to the two booster shots he got on Wednesday because he's been badly crashed ever since. We didn't know what was going on until last night when we noticed a big, red swollen bump on his arm. He had no reaction at all a couple of years ago to his meningitis shot, but he reacted badly to the booster this week...probably because his immune system is struggling now against Lyme plus two co-infections, in addition to the CFS. So, he's been in bad shape the past two days, exhausted with severe aches.
Normally, Jamie helps drive back and forth to NJ (about 90 minutes each way), but yesterday he felt so bad that he rode in the backseat lying down. And we usually enjoy lunch at Panera before we head back home, but this time, we just drove there, had our appointment, and got right back in the car to drive home again. By the time we got home, I was pretty exhausted, too.
My other problem is that I haven't been sleeping well this week - that's probably my main problem. I think one of my new meds (Immunovir) was overstimulating me and disrupting my sleep. It does seem to give me more energy and cut down on crashes, though. So, I reduced the dose yesterday and slept a lot better last night. Hopefully, I've got that straightened out now.
We both need to rest and recover this weekend because next week is even worse - blood tests for both boys Monday morning, more PT for Craig, a college visit Tuesday, an orthodontist appointment, Meet the Teacher night, and a trip to NYC for Jamie and I to see another doctor. The following Monday morning, Craig heads back to school, and Jamie gets oral surgery at the hospital to get all four wisdom teeth removed. The fun just goes on and on!
Time to chill out with some TV with my family...enjoy the weekend!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Hi,
ReplyDeleteI always enjoy your blog...
It is so tough to get everything done - for regular people without the challenges of ME/CFS etc.
As a person also severely affected by ME/CFS - I find it so hard to keep up with "our news" too - blogs, news sites, associations, Facebook, Twitter and on it goes.
Before ME/CFS, I did database work. So wanted you to know I built a site that tracks/follows "our" trending news.
Its like a GIANT blog roll for ME/CFS sites!
http://mecfsblogroll.blogspot.com/
It helps me keep up, as I am forever hopeful that someday I will find "the answer." But in the meantime, I am comforted and feel less alone by keeping up with blogs like your!
Take Care,
Elisabeth
Oh! I'm so sorry to hear that you and yours are having such a hard week!
ReplyDeleteI hope you have some time of relaxation and rest tonight!
Sorry you're not feeling your best - I really understand, as I'm still wiped out myself. I'm even more exhausted, just reading about your week - I hope you realize how many things you actually accomplished. (I find that I tend not to give myself credit for things that do get done and obsess about all I was supposed to do instead.) Anyways, Feel Better Soon!
ReplyDeleteI hope both you and Jamie feel much better soon, Sue.
ReplyDeleteOh my goodness, so much going on in your house. No wonder you are exhausted. Poor Jamie...sure hope the shots and surgery do not trigger the Lyme to activate more. The Lyme seems to do that when the body is under physical or emotional trauma...Will keep him and all of you in my prayers!
ReplyDeleteI'm not surprised that he crashed from the shots. My doc wants me to get a flu shot and I'm dubious. The last thing I need right now is to get worse than I already am.
ReplyDeleteYeah, the few weeks leading up to school were exhausting even before I got sick. At least my son is all set now. I'm just trying to cram in the doctor appointments prior to his starting classes.
Rest up. Sleep as much as possible. Take lots of breaks and sit downs. See you on the flip side.
Sue - Sorry to hear that you have had a rough week. Hopefully you will have the opportunity to rest during the coming days and get back on some sort of even keel, if that is even possible!
ReplyDeleteI am having similar problems with medication and sleep, namely that I have just changed to different tablets and, although my body still feels exhausted most of the day and night, my mind is too wired to shut off at a proper time.
Hope things pick up for you soon.
PS: I have missed adding my lists to you Movie Monday posts!
Elisa -
ReplyDeleteWow, that sounds great - just what we need! I will go check it out.
Thanks -
Sue
Baffled -
ReplyDeleteI have always avoided flu shots for exactly this reason. I assumed they would stimulate my immune system (that is their purpose, after all) even more than it already is and trigger a crash. Then, two winters ago, I had a bad relapse that lasted 9 months, probably triggered by exposure to some sort of virus (my worst ones usually are), so last fall, I decided to get a flu shot.
The flu shot triggered a month-long crash...but then I felt good the rest of the winter, without my usual virally-triggered crashes. So, it's hard to say whether that was due to getting the shot or not.
In any case, the month-long crash from the shot was real, so I think I will skip it this winter.
Sue
Chris -
ReplyDeleteAnd I've missed hearing about all your movie recommendations!!
Hope you are doing well - I will have to go check out your blog and see what you've been up to.
Sue
So sorry you are having such a hard time right now... And your boys too. Seems like the time right before school is wild and our kids are all grown now! There is just so much going on in the community and in our family with gkids.
ReplyDeleteHope and pray things get better fast for you all!
Blessings to you,
Elaine
Sorry to hear Jamie's feeling so badly. It's so hard to decide what is going to crash us and what isn't. I've avoided the flu shot since getting ill.
ReplyDeleteHope things slow down for you soon and that you are able to rest and replenish some energy stores.
And topping it off--all four wisdom teeth! fun. hang in there y'all. (Who am I channeling...?) My writing has been bad lately too. I write GREAT just as I'm falling asleep...in morning all gone. Starting to hate my blog. Boring. I pity my readers. ANYHOO--good luck next week!
ReplyDeleteI'm so sorry things have been rough on your end - i'm in the same boat. I'd love to know what Dr. you are seeing in NYC and any reviews / thoughts on him / her and his/her specialty. Hang in there......there is a light at the end of the tunnel...just keep trying to chug towards it.
ReplyDeleteAll the best,
Brita
Brita -
ReplyDeleteI took Jamie to see Dr. Susan Levine, who I've been seeing for about 5 years. She's an Infectious Disease specialist who specializes in CFS. She's also on the CFS Advisory Committee for the Dept of Health & Human Services. She's fabulous and has helped me immensely. We left today feeling much more optimistic. I'll write about it as soon as I recover (very long day!)
Sue
Thanks for the tips and encouragement, Phylor!
ReplyDeleteYes, we have LOTS of experience at younger levels with getting accommodations for our sons (they both have 504 Plans), and we will definitely contact each college's disability office when Jamie narrows down his choices. In fact, when we went to visit Lafayette College a few weeks ago, we met with their person in charge of disability and she was very helpful. That's comforting because he won't be able to do this on his own.
Thanks for the perspective from an actual college teacher!
Sue