Monday, June 21, 2010

Then Things Got Worse

Well, the motorcycle has been put off for awhile I think - however, the conversation opened Pandora's Box and I am feeling beyond defeated, exasperated, and lost.

My husband wants to know what my "plan" is. He wants to know if I take this month off, and then go back to work after and the same thing happens and I just going to "give up" or am I going to try to "push through". He asked if I was "throwing in the towel". He says he has a right to know "what he is looking at", is it a month, 6 months a year - or what. He doesn't want to hear that I have no way of knowing, he doesn't want to hear assume for the worst and hope for the best, he doesn't want to see my tears. He also, doesn't see what the point is in going in to see my doctor with me, when he's only going to say that he can't say how long I will need either.

As you can imagine, I am hurt (and of course he says I take everything too "literal"). How would you take it if your "partner", the one that is supposed to "stand by you", asked if you were giving up, throwing in the towel, or were going to push through. I tried to explain that I don't have "choices" - he simply doesn't get it and I don't think he wants too.

I'm angry also, I supported us when he was in a car wreck way back when our children were small, he was out of work for 3 months, I figured it out, told him not to worry, and we never knew in advance how long he would be out. Or how about that time he lost his job (by his fault) two months before Christmas one year and couldn't find another job until January? Yep, same thing, we would figure it out, he was told not to worry, and not only did I figure out how to pay the bills, but also how to provide Christmas for our children. I apparently do not get the same.

This morning, he called me to tell me it was "time to get up and join the world again". You can imagine how that made me feel as well.

I'm tired, I'm stressed, I feel like total crap, I am alone, I feel that it would be "easier" if I was doing this on my own. I can't take it any longer.

So my "plan" (per him I guess or at my moment of defeat one) is to ask my big boss about working from home and if he doesn't say yes then we go from there.

I don't know if I should still try for the doc appt. - I feel that it's only wasting my doctor's time, my money, and that perhaps we could use that time instead to fill out forms (since I doubt highly I am going to be able to work from home - I've already been told no - once).

Correct me if you think I'm wrong.

Meanwhile, not a great way to recoup from one week and prepare for the rest. I wasn't depressed before, but I certainly am now.


  1. You are better off alone! Drop the dead weight. You are more alone in such a hurtful relationship than while you are single. Not easy but wworth it I think.

  2. I'm so sorry to hear how lousy things are for you. The stress and pressure coming from your partner has got to be having a huge impact upon your physical health. Remind yourself that he is probably reacting like an arsehole because he is totally out of his depth and is in a panic trying to keep his head above water. Not sure if I already mentioned this to you but my friend Michael (main support other than mum and dad) said some hurtful things recently that aren't unlike the things your partner is saying. I told Michael to go a way for a few days and think about why he said what he said and eventually his response was that he is frustrated that I am not getting better and he feels completely helpless and he is terrified of having to sit and watch as I decline and ultimatly of losing me and not understanding why it's all happened.
    Obviously you need some space from his rantings but he probably needs some space also so that he can clear his thoughts and work out his own 'plan' for what he can do to be supportive and help the family through it all. Maybe you can suggest he take some time out and make a plan assuming that you wont be working in the next year ....???? I think you need to let go of the idea of working even from home and start moving forward .....

  3. want to give you hugs over here xx
    it is so hard when a partner can get short ended about a condition/illness/disabiliy.
    i can see from your profile that you have been with your hubby a long time so i didn't want to say "ok, get rid of them"...
    i know the complex of being in a long term relationship (esp including children etc) can make it all the more difficult.
    Like my partner a lot of people esp blokes, like to try to fix things or have a practical way of addressing a situation. It the thing of "fixing what's broken".

    However, ME/CFS or any other chronic condition is not something that can be fixed or cured and therefore it is a way of trying to get round the daily barriers of it.
    The best thing to do is sit him down and remind him that you are still you with or without the condition. Remind him what you did for him and the family when h had the accident and when he lost his job and that there is always a way to try get through things even if you can't technically fix them.
    Be straight with him, maybe get a leaflet or book about it, show it to him and let him know what you are up against. Don;t be afraid to let someone know how stressful it can be when you are pressurised into getting "better" when you may not know if this will happen at all.
    I had this with my partner when I got diagnosed with ME. I sat him down and told him what it was and had an answer as to me being so severly ill for so many month since Late last year.
    If he truly cannot accept your situation, then eventually it will start to become like heavy baggage and it can then put a strain on your illness a lot more than neccessary...

    a step at a time but don't be afraid of saying something... or he wont know.

    lots of hugs x x

  4. Wise words from Lee Lee and Vee Vee. Can't add any more. Hope things improve somewhat soon ((*))

  5. Don't know what happened to my previous comment, guess I must have forgotten to press post. But there's little to be said that hasn't been already, so just sending big hugs your way! I hope things turn around for you xx

  6. Oh, by the way, check this out if haven't already .... it could be something that is helpful for your husband.

  7. I was in a relationship when I first got diagnosed and he found it hard to deal with it. It's probably hard for someone to see the person they love struggling with a condition. However, it's not at all helpful to you for him to be reacting the way he is! Does he actually know what CFS is and how there is no cure? Can he go and talk to your doctor for more info? Don't miss out on your doctor appointments, you need all the support you can get.

    This charity Action for ME is a UK charity that has lots of helpful booklets:

  8. We talked somemore. He simply doesn't "get it".....he said that these were legitimate questions that he had a right to ask, period. I tried to explain that if I was in a car accident, he wouldn't be asking me these questions, he wouldn't be able to "plan" - we would just have to wait and see - he said that's different. Enough said...............

    Even if I wanted to leave him at the moment, I don't have the energy, so I'm just riding this ride too - I suppose.

    Thanks for all your helpful advice - Lee Lee - I am going to try and get him to see that video (although now, thanks to my "big" boss - he also believes there may be "something" else wrong) - everyone is grabbing at straws if you ask me..........

  9. I meant to say thanks for EVERYONE's advice - brain fog would be an understatement.