Thursday, 5 June 2014

When the demons whisper.



I still apologise. I don't know why. Or maybe I do. I'm not sure I want to confront the reasons why. I'm not sure if I want to strip myself bare. And truly examine my internal dialogue.

Yesterday I found myself once again apologising. Whilst bent in two and hoping against hope that I could hold on long enough to find a public loo. Trying not to put extra pressure on my husband as he tried to both press through the traffic as quickly as possible whilst also adhering to road laws. I didn't see much of the trip as my head was on my knees and all my energy was turned towards avoiding vomiting in the car. As he wheeled me into the shopping centre I was still apologising. When I finally made it out I apologised again.

I heard his reply.

You don't have to apologise.

I heard it each time. Yet I kept on apologising.

There's a part of me that feels like I've failed him. That I'm not the woman he married. That our life isn't what he expected.

I mentioned the other day that he was my carer. He hadn't even thought of our relationship that way.

But I had.

Burden.

That's the word that flashes into my head on the days where again I am begging for him to find a toilet, or when I say we have to go because I can feel my body slowly collapse, or I send him to a BBQ alone while I lie on the tiles of our bathroom.

I don't need for him to say it. I feel it everyday. I feel it every cancelled event. I feel it every day I can't prepare a meal. I feel it everyday another medical bill comes through. I feel it when the great unsaid raises it's head. Our finances are screwed over by my illness and all it has drained from us over the last eight years. I feel it every time I have to say

Not tonight.

I apologise because I feel he deserves better. I apologise because I am so reliant. I apologise because I can't be the wife I want to be.

I apologise for the distance that takes up residence on the days where dealing with the challenges of my body over-ride every other aspect of life.

I apologise for changing our life.

I apologise for broken promises.

I apologise for not being good enough.

I apologise for being.

The issue is mine I know. But I don't know how to change it. I want more for him. He deserves more.

So I'll apologise again.

And again.

And again.


Michelle


18 comments:

  1. I often feel the same way. I didn't KNOW how sick I was when I met my husband or when I started having kids (though it started at age 10, I wasn't diagnosed until around 23). I feel such guilt at how much I can't do, the increased difficulties on my family and the fear that something will be passed to my children. Sending major hugs your way.

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    1. Given the many responses over on FB as well, it would seem many of us have these feelings. So much we put on ourselves even when our loved ones don't feel that way. The guilt can be overwhelming at times. Big hugs to you to Sierra.

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  2. You summed it up..my husband didn't know what he was getting. I was pretty healthy when we met but I get weaker and more dependent every year. I apologize all the time. I feel like he deserves better than me.

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    1. Hugs Patti. My friend mentioned the question of worth over on FB. I think that plays into it. We want 'better' for our loved ones, when they may never have thought of it/us in that way. We are far harsher on ourselves than anyone else could ever be. xx

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  3. Michelle, from reading your blog, I can tell your husband aka Mr Grumpy is a wonderful man, but I can also tell (from reading your blog) that if your roles were reversed you would be equally as strong ,supportive and understanding as he is. Even though you are sick, you sound like a wonderful wife (and mother) to me...I mean I have seen some of those food photos you post!

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    1. Thanks Elizabeth I appreciate that. I am very grateful for Mr Grumpy, I couldn't do this without him. And yep, it's all about the food! :)

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  4. Thank you hon. I needed to see that and so does hubby. I think it might make him feel better and I understand it for him also.

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    1. Big hugs Tina. Seems it's touched a bit of cord for many today xx

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  5. I have Fibromyalgia. You have very accurately described my life as a wife of 20 some years & a mom of a teenaged son. I was very healthy until after I had my son & have gotten worse every since. But no one but my hubby & son ever even try to understand.

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    1. Hugs Anon. It's a hard road to travel and often very few in our lives will ever understand, or try to understand. xx

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  6. Bearing with a chronic debilitating illness makes a real human being.

    Try to imagine that, despite the pain you are merely a spectator. You are able to experience the life of this person in the most intimate way possible. But you cannot die. You can pass onto another body after this one is discarded. You are a soul, not a body.

    You may also engage with thos persons near you and ask them to recognise the soul within them and you. It will help still those annoying thoughts, thrown up by the ego. You will become a spiritual giant!

    More practically, consider taking nattokinase or serrapeptase, they clean the body of blocking tissue and clots. Aspirin is also useful and as much sunshine as possible.



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  7. Beautifully written words that sound like my internal talk too, Michelle. And that song.
    It is heart breaking but I know that love is big enough.
    Hugs to you and thank you so much for sharing this post. I am glad it made it out of your drafts folder. It's important.

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  8. Thanks! The shame and guilt is my constant partners wispering sweet break me down words to my Soul Every day. For years i belived most Every Word. I was really sick. Housbound and not much mental power either. I feelt like a damage goods, like i was worth nothing. Only a burden. I was lonly. And when in company hard to hide my illnes. I felt like an marshian. My partner was looked up on like a saint. Being Whit sick me, giving up so much. And Yes my husband is Somthimes a saint. And i am greatfull for him being Whit me. But most of all he is a human, flawed like the rest of us. I demanded less than nothing from him, cos he was Whit me and i was so useless. But Then i started realising he was hiding behind me. And also Yes i was sick, i tried my best Every day, i pushed my self over my limits. I gave all i had and more. So i started to make my voice heard to my partner. I was so scread of him leaving me. But i could not go on like before. I was and am an equal partner. It is an on going prosess. But the biggest benefiser has been my husband. He had some issues she had to deal Whit, and he has. I am so proud of him! My health has also improved, i can do more. But still i feel like a burden, still i have the shame, the guilt Whit me. But i try hard not to lisen. To look at all i do, to se what i bring, what i give of my self. And demand that my husband also do. So if others se me as a burden and my husband a living saint. Well thats their problem, They dont know us really. They dont know me. If all They can se is my illnes and my wheelchair etc well They are the ones Whit the issues really. But it still hurts. We dont have a very clean house, but up intill a few weeks ago i did all the house work, i did all the dinners etc. But inside i got really angry. Cos still i was seen as a burden, yeah i dont drive, there are situations i Need help. But i am also a giver, and a doer. And all my husband needed to consetrait on was our child and work. I have value too. And i almost always do my best. Over the years i have heard often How lucky i am to have my husband, but never the other way around. Yes i am lucky, very lucky and greatfull. It takes a spesial Kind to live Whit a sick spouse. I know. But he is lucky too! Even writing it down i start doupting it. Then i Get angry at my self and the world. Why to i have to feel less worthy? Why ? No he is lucky! I am awsome! ( i think, maby, hope so)

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    1. Yes, you are right! It takes a special person to live with and support a chronically ill spouse, but that doesn't make them a saint. It's so good that you recognized all those things and actively worked on them with your husband, and that he was open to them. Sounds like a very healthy marriage. And you know what? You're both lucky! You are NOT less worthy. He is lucky to have YOU as well! Sounds like you are a great mama and wife, despite being sick. You really power through to take care of your loved ones. Get that "think maybe hope so" outta there. It has no place. It's a "definitely for sure you bet" :)

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  9. Just wanted to say that I just read this to my man. He said 'Thank you. It's nice to know we are not the only ones'. ;-)

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  10. The agony of not being the wife that my husband deserves… of not being the woman that he married, of not having the life together that we expected… it drives me to my knees just as much as the pain does sometimes. And while your husband hadn't thought of himself as your carer, mine has, and it is both terrifying and bitter for him. He doesn't touch me for fear of hurting me more and making me sick. He hates hearing me cry in pain because it makes him feel angry and helpless, so he barricades himself in his man cave with computer games. The activities we used to do together are no longer feasible, and the finances are no longer there, so our "dates" have gone out the window. The marriage we embarked on is a tattered ghost of the vibrant tapestry we once wove together… but we are still trying. We are still fighting. Together, hand in hand, we are still there.

    And that's the thing. We, the sick ones, feel SO GUILTY. We apologize, over and over and over, sometimes with tears, sometimes not. (The last time I apologized, it was with racking, full body sobs that lasted for minutes. There is SO much guilt pent up inside of me! It's ALL MY FAULT!!! At least, that's what the voice in my head screams at me.) Our partners deserve better. Our families deserve better. Why would they ever choose the life that we are forcing upon them? And yet… they stay. Of their own free will, they stay. They COULD walk away, you know. So many do. They could choose not to interact lovingly with us any longer. Many go that route as well. But they continue to hold our hands, smooth back our hair, and fight alongside us as best they can with something as intangible as debilitating disease. Isn't that worth something?

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  11. I live with fibromyalgia; my husband has his own disability of mental disease, as well as some physical issues. We apologize to each other A LOT. So there's shame, guilt, and oh yeah, anger. I am SO angry at the life I have lost, so angry as the life I thought I would have with my beloved. We've been together for 4 years--and our meeting was what movies are always showing: we saw each other and we KNEW, KNEW that we were to be together. Seriously. We met on a Sunday; 8 days later we were living together and 4 years later, the only times we apart are for medical reasons lie sleep studies and appointments. Hell, we even go with each other to most of our appointments.
    This was not the life either of us had thought we'd have--but we would have no other. We would both be dead if we weren't together, it's really that simple. (Suicide is not the best answer, but sometimes it can seem like the only answer and if we had had to go through what we've been through on our own, alone...it would have been our answer.)
    At least my husband has a very good idea of what I am going through; he can understand the days I am in pain, just want to sleep, can't do more than play stupid flash games on the computer--because he also has them. Doesn't stop my feelings of "he deserves better than this sick old woman" (I'm 14 years older than he is) and it certainly doesn't alleviate my anger at not being able to do the things for him that I want to, like cooking our meals on a regular basis.
    But like the others who are commenting, we hold each other's hands, do all that we can to accommodate the reality of our disabilities and we may apologize a lot, but we also say "I love you" just as often.
    This is the reality of our life together--so we make a point of really enjoying the simple pleasures that come our way--the sharing of a good meal (when we eat out), the beauty of the ocean (we live in Eureka CA), a day without overwhelming pain ("Hey, I feel pretty good today") and other things that a lot of people would find stupid because they're so... common and ordinary. Too bad; they mean a lot to us. And we remember to express our gratitude to each other..."thank you" also gets said often.
    It's our life, it's my life...and while I would prefer not to have fibro, I wouldn't change a thing because I have so much to be thankful for, so much to enjoy--and fibro has made it a simplified life, which is easier to live in some ways than the "ordinary" life of jobs, schedules, fighting traffic, dealing with the "daily grind".
    So keep on keeping on, as the saying goes. Blessings to you all, Namaste!

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx