Friday, September 02, 2011

CFS Grief

It's been a long time since I've cried over CFS (yes, it does get better over time), but I cried this morning.  Not about myself but my son.  There is no worse experience in the world than seeing your child suffer and not being able to help him.

Jamie is no better, five days after his minor surgery.  In fact, he seems a bit worse, definitely in the grips of a severe crash.  Worse, this is not all due to his surgery this week.  He's been in terrible shape since about April, probably a reaction to his treatments for Lyme, bartonella, and babesia (tick-borne illnesses).

Whatever the causes, it is extremely difficult as parents to see him lie on the couch day after day while his friends run around being normal teenagers and getting ready for their senior year of high school.  My husband and I have been so upset these last few days, though of course, we try not to show it.

This kind of grieving is an integral part of living with chronic illness, but it never gets easier (less frequent, perhaps, but no less painful when it hits).

There is a very good chance that Jamie won't be able to attend school regularly this year, as he has for the past five years, since starting treatment for OI.  That is so painful to consider.  This is his senior year of high school; all we want is for him to be able to be a normal 17-year old.

We had to cancel our planned trip to visit my family this weekend.  We were supposed to attend my cousin's wedding tonight, a big family gathering tomorrow, and spend the day at a lake with my aunt and uncle and cousins on Sunday.  Instead, we're looking at yet another weekend spent in the family room.

OK, I'm trying to pull myself together and make the best of things.  Jamie and I have just started watching Ferris Bueller's Day Off on DVD - guaranteed laughs!


  1. Sorry for you all, Sue, especially Jamie. Yes, I know the CFS grief. I've been in one of those phases myself. I wish there was something I could do from afar. Hang in there. Maybe he will pick up over the fall?

  2. Sue
    I am so very sorry for Jamie...How difficult it must be for him. He truly has struggled with Lyme and the coinfections hasn't he. Having both CFS and Lyme is a double whammy and so NOT fair. I hate to see it happen to kids...
    I was wondering if Jamie does anything like infrared saunas for detoxing or Castor oil packs over the liver or epsom salt baths? I know you guys to burbur and pinella and parsley, right? The reason I am curious is that even though this crash is from the surgery, he has felt worse since April and deoxing is a major component of treating Lyme. Joel will feel lousy and he gets into our little portable sauna that looks like a toaster and he will feel so much better the next day. Getting rid of the dead toxins AND even the anethesia or anything else in there helps. I have read others saying the same thing...and also, if I may suggest, he stays off sugar, right? As that feeds Lyme. Our Lyme doctor told us Bartonella is so hard to treat....she is having Joel take many things for it right now in the hopes it will help get rid of it. Jamie is certainly challenged by having 3 bugs plus CFS. Joel and I have that too....PLEASE know that Jamie is in our prayers. Putting him on my list right now.

  3. Sue, I am so sorry to hear this. I know how horrible CFS can be. I too have grieved over the life I have lost. I will pray that jamie will rebound quickly and be able to attend school.

  4. Renee -

    Thanks so very much for your kind thoughts and prayers, as well as all the great advice!

    We've had to stop burbur and parsley because the drops contain alcohol, and you're not supposed to have even a drop of alcohol while on Flagyl.

    He tried a couple of Epsom salt baths and didn't really notice much improvement, but it's been a while, and I will try to get him into one today (he doesn't really like baths much). I've never heard of infrared sauna or pinella or Castor oil packs, so I will look into those.

    Right now, it's clear he's in the midst of a severe CFS crash - severe sore throat, swollen glands, etc. but you are right - the herx reaction(s) are still there in the background.

    Thank you!!!


  5. Sue, I've been in bed all week in a crash too and I had a new book called "the tapestry" by Neff. I wonder if you or Jamie have read it? It's a YA book and very harry potter ish...but once I got into it quite enjoyable. I just mention it because it's one of the only things that allows me to escape the M.E...and I know you guys are book lovers too.

  6. Upnorth -

    Thanks for the book recommendation - we are always interested in those!!

    I hadn't heard of that one yet, so we will definitely look into it.



  7. Hi Sue
    The infarRed Sauna is highly recommended and you can buy one for under 200.00.....It is a dry heat and pulls toxins out through the skin. Dr. V insists Joel have it 3x a week...starting very slow at first...building up. I will see if I can find a thread on it. Pinella is also from Nutramedix so would have alcohol in it. Neither Joel nor I could handle Flagyl...side effects made us so sick. I am allergic to alcohol, so I heat hot water and put my drops in that for 5 minutes and it causes the alcohol to evaoporate...STILL with flagyl I expect you would not want to take the chance.
    Castor oil packs help the liver to detox better...
    I hope the CFS crash from the surgery is short lived and he can regain some energy and began moving forward with improvements across the board. Oh Sue, it is so hard isn't it to watch our children suffer so. Hugs and prayers~

  8. Thanks so much for the extra information, Renee.

    And the sauna doesn't cause you severe OI symptoms? We have been taught to avoid high heat (hot showers, hot tubs, etc.) at all costs because heat dilates the blood vessels and makes OI so much worse. Jamie once got in the hot tub at a pool party and got so sick we had to come pick him up.

    Thanks for the tip on the drops. Also, I found parsley in capsules today and ordered some!


  9. I'm so sorry to read about Jamie's crash, Sue. No wonder this is a time of grieving for you. It must be overwhelming at times to have three CFS sufferers in the house.

    I hope he turns a corner soon and that something unexpectedly delightful and fun happens to your family this weekend. I'll be thinking of you.


  10. Thanks, Toni. We're getting ready to enjoy Chinese take-out (no food in the house since I thought we were going away!) and a movie - a nice Friday night.

    Jamie did manage to shower today - as we all know, that is a good sign of improvement during a crash!


  11. Sue, I'm so sorry he's struggling. I'm crossing my fingers that he'll begin to regain his energy back to where it was soon and that this won't go on and on. Grief. Yes. It's there with us despite everything else.

  12. Oh Sue
    I forgot about the OI with Jamie!! Sorry about that. Joel does not have that...I have it at times but nothing like you all.....I really hope the parsley helps. Dr. L told us it is stronger than the burber for detoxing...Joel can take it but I cannot. One thing about the Nutrimedix is that they are infused so more powerful...but anything would help. I have heard that epsom salt foot baths can help too? I have not used them. Glad to hear Jamie was able to shower and will enjoy a movie tonight. We are doing the same, watching Soul Surfer.

  13. Hi Sue,

    As always great informative post. I am glad to hear that the grief eases up a bit but am really sad to hear about Jamies set back.

    I can see my own grief (for myself) reflected in my mother's eyes and can't imagine how hard it must be to experience ME.CFS first hand as well as watch your family struggle with it as well.

    I went from moderate (able to function at a reduced rate) to severe (more or less bed ridden/housebound) after an operation for a deviated septum in November last year. I'm still at the housebound struggling to shower stage.

    I hope with all my heart for Jamie that he recovers fast. He is younger so may bounce back. (I realise that bounce is not quite the right word). It is good to read that you are very realistic about him delaying his senior year.

    I had to finish my senior year by correspondence from home (due to unrelated health conditions that affected my ability to write, thoracic outlet syndrome) and can remember how frustrating it was at the time. but now looking back it doesn't seem that big a deal and I still finished school and have good friends from the year before senior year.

    I had a question for you about the IV's , I've started getting them and between the IV's and blood tests my poor wee veins are starting to look a bit holey,

    How do you manage the twice weekly saline?

    Sarah B.

  14. Something else to look into for detoxing is activated charcoal. It will bind to toxins in the gut. The trick is to time it between meds so you get the good medicine in and the bad stuff out. I've been using it for about a month now and my gut seems to be doing quite a bit better and I've been slowly improving but I've made a lot of changes so I can't say it was all due to the charcoal. Just something to look into.

    Here is hoping Jamie is feeling better soon.

  15. I am so touched by this outpouring of support from all of you! It really does help tremendously just to know we are not alone.

    I've realized there may be yet another factor in this bad crash of his. The surgeon put him on amoxicillan after his oral surgery. That's an abx that works against Lyme so it may be causing its own herx reaction. I quizzed Jamie on symptoms yesterday and he did say his knees started to hurt yesterday (that's more of a Lyme thing than a CFS thing for him). Today's his last day on it, so I;m hoping that will help.

    @Sarah -
    Thanks for adding the perspective of a young person! Jamie had to do half homebound instruction in 6th grade, and we know he could do it again, but of course, we hope he can be a "normal" senior this year. Hearing of your experience helps!

    We haven't started the saline IV yet - I meet with the doctor next week to set it up. His will be once weekly, not twice. Dr. Rowe told me he rarely does twice a week (though we do know of one teen girl nearby who goes twice). I'll let you know how it goes!

    Baffled - Thanks for the tip about charcoal. I will look for that. Jamie has terrible GI problems. The trick will be timing it "between meds" as you suggest - between CFS and Lyme treatment, he and I takes meds about every 3 hours!!


  16. Anonymous3:26 AM

    Hi Sue

    So sorry to hear about your son. It is not easy living with CFS. I was a mess for a long time, was able to pull myself out of the suffering. I was lucky, I met some amazingly well informed professionals that helped me. I still feel the effects once in a while and the effect this has on quality of live is absolutely crazy! Thinking of your family and your son.

  17. Hi Sue

    CFS does have a massive influence on quality of life. I crashed hard for month, I was a complete vegetable in the beginning. I was lucky, I found amazing people that was able to help me. I have things under control now for the most part. But it is still a monster lurking and I hate that. Thinking of you and your family from sunny South Africa.