I keep thinking I need to write a blog post but what about? The news from here is rather boring - we've had a triple-crash week. Jamie, Craig, and I have all been down this week. It's very unusual for Craig to crash at all, and he missed three days of school this week. He went back today - got up this morning and on the bus by sheer willpower - he really hates being home and missing school and gets bored very easily!!
Jamie and I have both been very achy. The aches in my legs were so bad at bedtime last night that I was in tears. When all three of are down at once, it is almost certainly due to some sort of viral trigger. When I took Jamie for his saline IV last night, the doctor said it's been a bad winter for viruses so far. He said the old wive's tale that more people get sick during a mild winter is actually true. So, I guess we were all exposed to something that has caused our immune systems to go even more crazy than usual. Hopefully, it will pass soon.
We are getting more and more worried about Jamie. He's only been in school 1 day out of the past 3 weeks and is getting further and further behind. It's hard to see him lying on the couch day after day and suffering so, especially during a time of his life when his peers are so active and having so much fun.
So, one is back up and two are still lying here. I have been continuing to push myself ("must get things done," "have to do this," etc.) but am trying to be smarter now and rest. In fact, I should set aside the computer and read my book now. Even after 10 years, it is sometimes hard to remember that there is no way out of a crash but through it - and I will only make things worse by continuing to push. Rest, rest, rest...
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.
18 comments:
The title of your post caught my attention. The other morning when I was wishing I did not have to go through another procedure to rule out cancer, I was watching Joyce Meyer on TV and she said...."There is no way out but through!" It really brought me up short and I knew it was true for me. And now your title......
Still, I am sorry you guys are down again with a virus. So sorry you are struggling and so so sorry Jamie is having such a tough year. It is much harder to watch our kids go through things than go through them ourselves. Hang in there...rest rest rest...better days are ahead.
((HUGS)))
Abey is in a crash too SIGH!
Soo hard watching the teens not be able to live their teen years aye.
Enjoy your book!!!
Again I wish I was closer so I could run an errand or two for you
Love Leanne
I'm sorry you're having such a rough time - and very much appreciate your post. It's timely for me, and I know how difficult is is for you to write today.
Personally Sue I think that you need to let Jamie be sick until he gets better or finds an effective treatment. I don't even think he should be going to school. My thought is that since CFS is not perceived to be a real or "serious" disease, we are expected to live normal lives. You have to admit that you are sick and adjust your expectations, goals, and day to day living.
We are certainly not forcing Jamie to continue at school - that is his choice. He's just one semester away from graduating from high school, and it is very, very important to him to try to finish with his classmates. He was managing quite well until this year - missing 25-35 days a year and still getting straight A's. This is important to him, so we are supporting him and trying to help as much as we can. he has home tutors to help him catch up and has dropped all but the essential courses, so he now only has 1-2 classes at school each day.
Besides this being his own choice, several studies of pediatric CFS show clearly that remaining engaged in education/school is the best predictor for eventual recovery.
CFS affects everyone differently, and it is very, very important that each person - and each family - make their own choices based on their own individual needs.
Sue
Hi Sue,
So sorry you have all had such a bad week. It's so hard the monotony of being ill every day. I have trouble coping sometimes mentally/emotionally, I can only imagine being a teenager. He must be a tough soul, Jamie. I hope you both come through soon. Fingers crossed, thinking of you. BTW, I'm reading the Night Circus, quite intriguing, you might like it if you haven't read it.
I gave The Night Circus to my mom for Christmas because I'd heard so many good things about it. She loved it and is going to lend it to me next - the best kind of gift! Glad you are enjoying it, too.
Oh Sue, I'm so sorry to hear what you and your boys are going through right now. I feel your pain, frustration and definitely your achy-ness! ((hugs)) Epsom salt baths and B-12 injections are all that help when I have that much pain, but it's a crap shoot otherwise. I've already had 2 viruses this season, and I'm terrified of another. "There is no way out but through!"…inspiring words for all of us, and remember, we're all right here with you. Rest beats stress; easier said than done. Feel better. best, Martine
Martine -
Thanks for the encouragement! "rest beats stress" - I like that one!!
Jamie's new B12 injections just arrived in the mail yesterday - he will start those this week - glad to hear they helped you. I have tried to get him into the Epsom salt bath but he really hates to take a bath. Thanks for the good thoughts!
Sue,
I have been in a crash for about a month now - haven't seen anything like that in years on my end. That's about the time I caught a bug from someone, so I believe there is something going around for sure. You know we aren't too far from each other!
Hi Sue,
Sorry you are all having so much trouble :(
If Jamie doesn't want to take an epsom salts bath, you can get transdermal magnesium oil that you can apply to skin and wash off later. I've been applying it to my forehead for headaches. It might help achy legs, depending on the cause.
Sorry to hear that Jamie is having such trouble so close to the end of school. A friend of mine in high school ended up graduating a year later than the rest of us, since she became pregnant in grade 12. She is considered to be a member of our 'class', regardless. I hope Jamie can finish with his friends without worsening his health. B12 may be missing link!
D.
Great tip, D! I hadn't heard of transdermal Mg yet - I think I will look for that for Jamie. His leg aches get really bad sometimes. Thanks!
He is also starting Immunovir next week, so hopefully that will help decrease these weeks-long virally triggered crashes AND help him to better fight the Lyme.
Sue
Hi Sue. I have a 23 year old son with cfs and fibro. You are so right about your son having a reason to get out. This is a very socially isolating disease. My son has made it through college but has not had the ability to hold down a job, this makes it very difficult for him as he does not have a way to be around young people. When he has a reason to get out he makes it at all costs and we see such a difference in his mental state. They need to be around young people! He will feel so much better about himself when he has achieved his goal and then he can set another one and know that he can do it. Their journey is not the same as others their age but it is their journey and they have just as much right to follow their dreams with support and dignity.
Thanks for sharing your story, Sunflower, and for your support. You are right - being out among people their own age is so important, and this rotten illness can be so isolating. I can tell you from my own years of illness, especially the early years, that the isolation can be horrible.
You might be interested in our Parents group on Facebook - the name refers to parents of teens, but there are lots of parents there whose sick kids are now young adults, like yours. Here's the link, in case you are interested:
http://www.facebook.com/groups/225903134138530/#!/groups/164665786958252/
The transdermal mag smells funny at first, but that dissipates and it doesn't seem to hover in clothes or on skin. Be warned though, it's a bit 'funky' for the first minute or two :)
Hope it helps!
D.
Thanks for the warning! I will look for it next time I order supplements.
praying that everyone gets better quickly
We are all former CFIDS/ME/FMS/MCS/GWS pts and would love to have you join us if this is what happened to you as well.https://www.facebook.com/groups/1395303017387005/1419922028258437/?notif_t=group_activity
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