What do you do when there are TWO exhausted people?

Discussion in 'Fibromyalgia Main Forum' started by Juloo, May 26, 2006.

  1. Juloo

    Juloo Member

    I've been dealing with CFS for about 8 years. I've gone through many treatment protocols, and am now working with one of the FFCs. But that's many hours away. My husband and I both see a local nurse practitioner to oversee our antidepressants. We saw her this past week. We always have bloodwork due before our appointment, and this past one, she checked our EBV along with the usual stuff, and my husband's IgeneX Lyme test was in.

    Although I didn't test "CDC positive", my own IgeneX test was four positives and one indeterminate -- positive 'enough' for the FFC doc to put me on antibiotics. My EBV has been high ever since I've first gotten it tested (two years now).

    Sooooooo, the RNP said to my husband -- your IgeneX is not "CDC positive", but, of course, he had several positive bands (and we know he was bitten, because he had a bulls-eye rash about two summers ago). And she said he EBV was the highest she'd ever seen. Then she turned to me -- at least, she said, it was the highest she'd seen until she took MY results out of the fax machine.

    My father-in-law died three months ago, so my husband has been under quite a lot of stress. That has translated to work and home as well, so my stress level has been up. Lately, my husband has been uncharacteristically tired -- and we have a business together, which requires mental sharpness -- that's suffering.

    So he's going up on the Valtrex level for a bit AND starting doxy for the Lyme. In the meantime, the both of us are barely functional at home. The RNP considers the both of us basically as having 'active' EBV along with everything else. Our 9-year-old son is fairly self-sufficient, but our lack of energy is not great for him.

    How does anyone out there deal with TWO chronically exhausted people in the house at a time? My husband has not dealt with this for long enough to understand the necessity of cutting back on social and other obligations, so his frustration with himself is a ROYAL PAIN, not to mention an additional stress for me, and I already deal with work, son, house, and wife duties. Not to mention (in my selfish way) that I now have no support for my own situation.

    Any words of help? Hopefully we can get his condition dealt with, but I imagine it will be a while before he is out of the woods.
  2. victoria

    victoria New Member

    I can only imagine what you're going thru, so sorry! It seems like my DH and I take turns basically as to who is feeling worse so it works out... hopefully some of your son's friends' parents can perhaps help out a bit as far as his activities are concerned.

    The rest I'd pretty much let go, only do what is necessary for right now as getting stressed out over it all will not help. You know this already I'm sure...

    bumping this up for you, hope you get some more answers....

    take care,
    Victoria
  3. hugs4evry1

    hugs4evry1 New Member

    I'm going through a very similar thing....

    I've been ill for years and I'm in my second major flare that's lasted almost 2 years. (FM/CFS/Hypothyroid)

    This past year, my husband started to get sick. A year ago, he was the pitcher on the base team that won the season and this year he can barely get up off the sofa.

    He's tested postive for both EBV and Lyme (2 bands) and so far, nothing has been done for him....nothing.

    And the most fun part is that my daughter has moved back in with us...she has a plateful of problems including FM and BPD. (5 psych hospitals this past year)

    So I'm not even out of this flare yet, but I find myself in the position of being the most competent in the house. Somehow hubby makes it through work each day, but when he comes home...he's just finished. You can see it in his eyes.

    On weekends he's often ready to go back to bed by 8:30 in the morning and I encourage it...he needs to rest his body sometime and needs to do it when he can.

    For me, I have so many chores I can't even list them but I take it a day at a time. (Yesterday I got my hair done!!!)

    Today I have yard work, gardening and laundry to do and hopefully someone will cook besides me cause I know I'm going to be exhausted. I also need to go to the grocery store for a big payday trip but I'll have to put that off until another time.

    I wish I could help you more but I just wanted to let you know that I do understand.

    Hugs,

    Nancy B.
  4. pawprints

    pawprints New Member

    I am so sorry you are both going through this.

    I know you do not need another "to do" thing, but perhaps seeing a counseler for a few times might help. That way both of you get a chance to express yourself. For instance, you can mention the need for him to cut back on social obligations.

    I have found that a good counseler usually can offer some practical solutions during a rough time.

    Wishing you the best.
    Shana
  5. Juloo

    Juloo Member

    I'm sorry that I haven't replied sooner -- my mother-in-law was visiting this weekend. But it has been a very rough day today, so getting on and reading your replies has helped.

    I hate to sound so dramatic and needy. It's not something I enjoy in myself, so it is not something that I usually share. I'm hoping that tomorrow, when I wake up, things will look better, life more balanced.

    This Memorial Day weekend, my husband invited my MIL up -- so she drove up herself and arrived Thursday evening. She was expecting to leave Sunday morning. Well, this morning came and went, and she was still here (not a problem, just kind of a surprise). At lunch, she was talking about 'tomorrow when she drives back', etc., so I pulled my husband aside and asked, point blank, "When is your mother going home?" He replied, "Tomorrow", as if I was kind of slow or stupid. This was really a puzzle -- I know what the schedule had been. Later I asked him when his mother told him she wanted to spend an extra day. He told me maybe Friday or Saturday.

    I was so ticked off at him that I didn't speak to him the rest of the day. This evening, he apologized up one side and down the other -- he *thought* he told me. He *remembers* telling me! (Me now -- no, he didn't. I PROMISE I would have remembered that conversation ... plus, I can tell you, minute by minute, what I've been doing for the last two days.)

    I asked him how often this type of memory lapse was happening to him. He said at least once a week, sometimes more. I know that Wednesday we were out for lunch and the waitress asked him if he wanted grilled onions for a side, and my husband said, well, yes, I would like grilled mushrooms. When he was served grilled mushrooms, he told the waitress he had ordered onions, but I told him he HAD ordered mushrooms.

    Can anyone that's as familiar with brain fog and cognitive decline as someone who has been dealing with CFS for eight years hear this sort of stuff and NOT be worried? My husband is only 42.

    I'm beyond scared. I'm terrified. He started taking oral antibiotics for Lyme on Friday. I guess I should have some faith, but it is as if my husband is turning into a stranger right in front of me.

    P.S. Pawprints -- you're right about the counselor. I've been going off and on for about five years. I convinced my husband to start seeing someone about a year ago, and we go together once a month and separately once a month. We're down to once a month for the summer, but considering the situation, I may ask for some extra appointments. He has helped a lot with my husband's works stress and helped through my father-in-law's death earlier this year. He doesn't know much about CFS or Lyme, but he's teachable. Both my husband and I like him, and most importantly -- he speaks my husband's language!
    [This Message was Edited on 05/28/2006]
  6. hopeful4

    hopeful4 New Member

    Wow, it's an eye-opener to see how many of us are dealing with this.

    My DH has been so caring and helpful...my rock of Gibraltar. Last fall, he started developing some odd symptoms (ocular migraine), and has been going downhill every since.

    He's gotten bronchitis, and flu since then, very severe. He's usually never sick.

    He got diagnosed with CFIDS/FM for starters. He then tested positive for EBV, mycoplasma pneumoniae, chlamydia pneumoniae, and Lyme, of course.

    He's declining before my eyes, and it's really painful to watch. He is still much more functional than I am, but so much stress and burden is on him right now, and he's becoming fatigued every day, and crashing, which he previously didn't do.

    For him to "cut back" on activities, he just about has to hit a brick wall...which seems to be happening right now. We're both exhausted, and going through Lyme et.al. treatment is a marathon. What can we do? Just have to keep on the best we can...keeping the goal in front of our minds.
  7. Juloo

    Juloo Member

    I was just about to sign off for the night and checked email which notified me of a reply. I clicked on to see it, and I thought *I* had a major brain-lapse...it's really eerie to read something I could have written -- actually for a moment, thought I had but just forgot!

    I've wondered for a while how much of this can be because of intimate contact. Obviously the EBV can be -- although I wonder about the chronic active type. I've been diagnosed w/c.pneumoniae, but my husband has not been tested for that. The Lyme makes me wonder -- we know he was bitten, but I don't remember having been bitten. On the other hand, I've had a lot more history in Lyme-infested parts of the country, so it is possible I picked it up anytime in the last 30 years.

    The hardest thing is seeing my husband going through stuff that I wouldn't want my worst enemy to experience, and despairing of having the energy to take on his care on top of my own.

    I'm going to try to spent a few minutes meditating this evening before going to bed. My nose is all stuffed up from crying, and that's not a common reaction for me, and it makes it hard to sleep.

    Thank you for your reply this evening. I REALLY NEEDED IT!
  8. hopeful4

    hopeful4 New Member

    Juloo,
    You're doing everything you can, you both are. Is there anyone out there who can lend a hand with some things, like shopping, driving to Dr. appointments, laundry, meals?

    For me, it's been hard to get help, and even hard to ask for it. My son (adult) comes over to cook for me when I'm going through a rough patch, and he also drives me out of town to FFC and other Dr. appts.

    Friends, or should I say acquaintances, have fallen away. There are a couple of true ones, who, when able, take me grocery shopping, or stop by to help with misc. But, this is not a regular thing I can count on.

    Is there a lyme support group in your area? That could really help you, esp. with someone to talk to who understands, as well as support re: treatment. I found a statewide support group on a flyer given to me at FFC. We didn't have a local chapter, so in desperation, I started one with their help. It's a great connection to have.

    Do you have any local agencies that could help out with housework or misc.?

    Keep on meditating and visualizing! Without it I don't know where I'd be. My favorite tried and true tape is Creative Visualization by Shakti Gawain, I'm surprised it still works after so many years of using it.

    Connect with your Higher Source, and be well.
    Hopeful4