Saturday, February 26, 2011

Hitting Bottom

This was a cumulative effect.  The colonoscopy crashed me harder and longer than I had anticipated.  I figured a couple of days and I'd be back on my feet and back to my old schedule.  Boy was I surprised when I loaded the dishwasher last Saturday and had to sleep for three hours afterwards.  I managed to make ONE and only one dinner this past week.  Again this was a combination of events.  My son is now working as well as attending college in the afternoons.  He is no longer around to run errands and then help me with dinner.  Since I was crashed so badly from the surgery, it was impossible for me to cook and we didn't have any groceries anyway.  And cooking that one very easy meal sent me back to bed for hours again.  I didn't even have the energy to hold up the butcher's knife I was using to skin the chicken.  I kept having to put it down since it was too heavy for me.  I have never been crashed that badly before.  Scary!

This lead to the next nasty event.  Hubby threw a grand mal hissy fit and stopped talking to me.  He was furious.  He hit his peak on the day my migraine started.  So there I was on the couch with my knitted wristies over my eyes because I couldn't stand light or motion, with the TV on low so that I could listen to the quiet tones of the documentaries on PBS for distraction and unable to move so that I wouldn't make the pain worse than it already was.  Dinnertime came and he was crashing around the kitchen.  Every door slam made me wince in pain.  He made himself dinner and once he was done finally came in the room and said "Want anything?" in that 'I dare you to answer' tone of voice.  I asked him what was for dinner and he told me he already ate and since I didn't say anything he assumed that I didn't want anything.  WTF??  When have I ever skipped dinner?  I live for food.  We've been married for 20 years so this is not secret information.  And here I am parked on the couch unable to move or talk above a whisper and you have been avoiding me since you got home from work.  So how the hell was I supposed to ask about dinner?  More crashing about the kitchen produced a bowl of ravioli and another question "Am I taking you to the Hospital?" again in that  'I dare you' tone with an undercurrent of 'gee can I get rid of you?'  He left me alone the rest of the night and eventually snuck off to bed leaving me in my misery.  I was starving and thirsty and reluctant to move.  My son made me a bowl of oatmeal and got me a drink which helped tremendously.  Boy does he make terrible oatmeal but I was happy for the food and the lack of abuse. 

For the next several days I got the silent treatment.  No concern.  No hugs.  No 'how are you feeling today?'  Nothing.  Then Friday comes and I have my neuropsych follow up.  Two weeks ago I took a series of tests for memory and cognitive functioning and Friday was results day.  She did a thorough job with the report.  I had gone there to see if I had deficits that would qualify me for disability or at least a test that showed that something was wrong.  The testing did show problems with slowed motor skills and poor working memory and the tests showed that my brain was intact and physically functioning just something was interfering with the memory and motor skills.  Now this is where things go horribly wrong.  She says that this all can be fixed by proper sleep, vitamins, exercise and cognitive behavioural therapy.  She says that I am fine to go back to work barring any physical problems.  This just sent me over the edge.  I fell down the well very suddenly and very unexpectedly.  On the drive home I hit bottom.  The thought that it would have been so much better and easier if I had just died a year ago rather than get horribly ill.  We wouldn't be burning through our savings account.  CJ wouldn't be mad at me.  The kid would have his college fund.  I wouldn't be wasting their time driving me to specialists who all tell me I'm okay and I just need cognitive therapy to stop me from benefiting from being ill.  It would be so much easier if I just disappeared.  The house would have been paid off with my life insurance policy.  CJ could go live where ever he wanted and probably even buy a new business with the leftover money.  It would have just been easier.

A night's sleep cures many ills, particularly mental ones.  I'm doing much better today.  I'm in better spirits.  I started my Celebrex again to stop the headaches and joint pain.  I wasn't supposed to start it for another few days but I couldn't stand the pain any more.  I'm back on my diet so I get to eat good carbs and fruit and salad again.  CJ and I started talking again last night.  I told him that it was okay to be angry.  I get that.  This whole thing sucks.  However, it is NOT okay to take it out on me.  He still isn't at the point of asking me how I'm doing but at least he is talking to me again and behaving more like a human being.  He actually kissed me this morning.  First time in days!

The sun is out and it is another day.  I see a holistic doctor next week.  He is part of an integrative medicine practice.  I'm hoping that this will work better for me since I would love some help with my diet and supplements as well as better pain management.  I'm even willing to try CBT.  I will probably derive some benefit from it.  However, I'm under no illusions that this will make me better or fix my brain functioning.  That chick has no idea what CFS is or how it affects the brain.  While I agree with her test results I don't agree with her interpretation or her recommendations.  I sent all the information to my lawyer and I'm wondering if she can get the neuropsych lady to change her report.  In the meantime I'm looking for papers that refute the CBT & GET model for curing CFS.

I might have hit bottom yesterday but I'm bouncing back up again pretty fast.  Things are looking a lot better today.  I still have a lot of fight left in me.  I guess I'm not going away that easily after all.


  1. Oh hun have i been there,i even broke down and admitted tomy dr that i might need help ,that the depression was really bad.She said she's refer me and id get a call.Did i ....nope.Ive been refused disibility and that was tough on hubby.It took him a while to accept i can no longer work although every so often he'll suggest some work from home crap.
    The longest he stopped speaking to me was 2 weeks and you know what it wasnt really me he was mad at but mainly work.
    Wishing you a pain free stress free weekend:)

  2. Pain levels are way down thanks to being back on meds. Yay for chemicals!! I do have a wonderful therapist and we will talk about this at our next session. I highly recomend having someone to talk to outside the family dynamic. When you find the right person to talk with they are invaluable. I've had full blown depression before and while I have bad days now and again since being ill I haven't fallen down the pit and not been able to get back out. It might still happen as this is such a difficult situation to be in but so far I only have the occassional bad days. It totally stinks when our spouses take out their anger on us. In my case I know he is angry at the situation and not really me but he dumps on me hard sometimes and that just hurts.

  3. Hello,
    Baffled, I saw your response to one of Sue's posts and I love the way you described the difference between fibro and chronic fatigue symptoms! I have both and am amazed at the difference they can have. And at the similarities too. I wish you the best.


  4. Having both makes it easier to explain. I have been trying for a year now to come up with better ways of describing the conditions to the doctors. It is so difficult if you haven't experienced anything like it before. Kind of like a sighted person trying to describe colors to the blind. You just don't get it if you haven't experienced it.

  5. Wow, I'm so sorry you've been through so much this week. I don't know if I could handle it if my husband treated me that way. I do remember him being very upset in the first couple of years and having trouble coping, but his typical reaction is to withdraw rather than get outwardly angry. It was very kind and thoughtful of you to try to understand what your husband is going through, too, and I thought your response was perfect.

    You got the "GET and CBT" line here in the US??? Wow, that is so troubling, especially from a neuropsych who just saw hard evidence of the cognitive dysfunction caused by CFS. Very scary. So sorry that was the outcome after going through the exhaustion of the testing itself!

    I hope things are better at your house today - glad you were able to get back on your pain meds. Thinking of you...


  6. I'm thinking of showing her the video of me on one of my bad days. I would post it here but it includes my name which I don't want published on my blog just yet. Let her explain that with "your thoughts are causing your behaviour". I'm also going to set my lawyer on her and maybe get a retraction of her recomendations. They just don't make sense in my case. Maybe my lawyer can just ask her if she knows anything about CFS and how it affects cognition. Anyhow I hadn't planned on doing major damage control after the testing. Now I have even more stuff to do for my LTD case instead of less. Poo!

  7. When I was approved for disability (I'm in the U.S.) my lawyer said I would never get it with my Addison's Disease diagnosis. I was approved because of fibromyalgia and depression. They treated the Addison's as an afterthought, even that is totally debiltated me. Hey whatever works. Maybe your lawyer can do something.