A Scapegoating Family and Chronic Illness.

stock-photo-73650125-young-woman-mowing-grass

I just finished mowing the lawn.  I don’t think mowing the lawn is supposed to make a forty-nine-year-old feel like she’s almost going to have a heart attack and crying, shaking, and stumbling at the end because she’s now exhausted to the bones for the effort.  I am alone and I truly can’t afford to pay someone to do it for me.  Some days I can do it without this much drama but I’ve been in a CFS relapse for the last two months.

This is life is Chronic Fatigue Syndrome, where the body doesn’t make enough energy at the cellular level to even properly fuel the body’s organs.  Nobody dies of CFS, at least that’s not what’s written down as cause of death, they die of “heart failure”, “liver failure”, etc.  Because there’s not enough energy the body receives damage to the organs and then because there’s also not enough energy to heal them, the body finally gives out like a worn-out shoe.

I’ll explain how this is related to being scapegoated in my situation but first please allow me this rant.  I hate the name of this disease – people with this aren’t “tired”, we’re hit with a baseball bat and thrown to the side of the road of life.  There are days of being bedridden even at a good level of “recovery” (there is no full recovery for most and it’s very rare when it happens) but relapses are inherent in the disorder and they can throw a person back to how they felt two years ago, say, when their body wouldn’t let them out for the bed for weeks.

How is this made worse for me?  I was already all alone, isolating myself more and more through life out of fear of rejection.  I was divorced from a gaslighting husband with my sanity still intact but now reliant on my own for income – I was a nanny back then and not making much at all.  Poverty began to be the cloak I found myself wearing although I knew I was destined for it even before marriage by ways I won’t mention in this post.

All this started years ago when I found myself slowly unable to function at my last well-enough-paying job until one day I was literally unable to move out of bed.  It was the strangest thing.  I felt pinned to the mattress, my heart feeling like it was going to jump out of my chest if I mustered enough strength to sit up.  Sitting up felt like someone was pushing me back flat on the mattress while I struggled to roll on my elbow to be used as leverage to rise.  I found myself there for the next three years in a health nightmare.the-room-1428348

I didn’t have a husband or children to vacuum, get food, nothing.  I had just enough energy to get to the washroom stooped over and then fall back into bed again.  In a herculean feat I would every four or five days manage to pull on some clothes and drive one block away to my small town’s gas station that also held some grocery items.  I’d buy a few things like frozen pizzas that didn’t need effort to be able to be eaten.

I needed help.  Desperately.  I didn’t know what I had as I never heard of someone being so exhausted for so long before so I couldn’t intelligently articulate to other what I was going through because I feared they would think I was exaggerating.  My doctor at the time said I was depressed even though I described to him the level of exhaustion.  I was depressed before and this wasn’t the same kind of tiredness.  I told my parents I didn’t have any energy.  They lived twenty minutes away in the city and, because they thought I was depressed, they not once came to help.  Even if I had been depressed, which I wasn’t, I still would have needed help, but I was on my own.

It was a nightmare.  I don’t know how I made it through.  I don’t know why no one helped me on their own.  I know, though, that I didn’t have the confidence to stand up for myself and get community help like home-care or see what resources there was for me out there because I was afraid no one would believe me, not having a diagnosis and not knowing what was wrong with me.  I needed an advocate and someone to take my part for me but I had only myself to rely on and I didn’t have the energy to help myself.

I was later diagnosed by a different doctor in a new town I moved to where homes were less expensive than even the one I already had.  My mortgage was tiny and cheaper than rent but something in me (from God) told me I needed an even smaller mortgage.  With my diagnosis I had something to look up and started to research how to improve my circumstances.  Excellent whole food nutrition was the leading manner in which to help my body heal, and I began on that where I could afford it.

I’m now subsisting on a small disability income so my illness has now firmly placed me in poverty.  I am so grateful for the disability income, though, as it’s relieved a lot of stress of how I was going to keep food in the house so I can concentrate on keeping my recovery level at an acceptable level.  I can now do a little daily maintenance so I can have a relatively clean house, which is a huge for my morale.

But I’m still alone.  My family is aware of my diagnosis and the information of what CFS actually is and how it can destroy people’s lives is all out there.  They’d just have to look it up.  They haven’t bothered and it’s like they resent me more.  I’ve now PROVEN to them what a loser I am and they come across like they find it galling that I’m in a place of need.  I read in Proverbs the other day:  (Proverbs 14: 20-21)

20 The poor is hated even of his own neighbour: but the rich hath many friends

21 He that despiseth his neighbour sinneth: but he that hath mercy on the poor, happy is he.

Of course they will despise me as it is the way with people unless they are found in God and love the ways of God and, therefore, their neighbour.  If I had a sister who was alone and ill and had trouble being able to feed herself as I was, I would be all OVER that situation.  If I even just had a neighbour, let alone a family member, that was in that predicament I would help.  So we are talking of a severe difference in how my family and I see our roles and responsibilities to people in need.  My wish would be to give someone in such a place dignity and peace of mind in taking care of things for them, while my family finds it an opportunity to sneer and distance themselves.

That is their spiritual road.  I’ve gone no-contact with my siblings and I leave them to it. I am done trying to call them and be friends with them just to be rebuffed over the years.  God Himself will meet them to change them as He chooses, but I leave them with no wish of harm but in God’s hands.  My battered heart needs to be far from them as it heals along with my body.

 

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11 thoughts on “A Scapegoating Family and Chronic Illness.

  1. I read this tearfully and relating to every word of it. Powerfully said. Childhood abuse is the gift that keeps on giving according to the Center for Disease Control in the Adverse Childhood Experiences study. Check it out if you haven’t already, 17000 some participants over decades were followed to observe long term impacts on health when children experienced “adverse” childhoods. They outcomes were astonishing and highly correlated. Patterns of chronic disease, subsequent abusive relationships, so much destruction had its roots in the nursery. Those perps then blame their victim for their consequences of their actions on the victims long term health. Narcs. gotta love them and their legacy. https://www.cdc.gov/violenceprevention/acestudy/about.html

    It disturbs me to know of my siblings ski trips, and trips to Europe and robust health. Their fancy bikes and extreme sports while I lay wounded in some forgotten berg fighting like a fiend for every ounce of medical care I get and wondering if I have the gas in the car to make to to the doctor or for the medical tests scheduled. Obviously the adverse childhood we had didn’t impact them the same, so I expect the health outcomes of golden children are quite different than scapegoats.

    And they wouldn’t sent gas money for food money despite their huge bank accounts and massive assets. Should I ask for help their be no end of the “loser” speeches and the “your bad choices made you sick” “we don’t subsidize bad choices” Then they post on facebook about “poor relatives that think they are entitled to the money your hard work got you” My sisters hard work was signing up for dating websites and filtering men out according to their bank accounts. She married into money and power twice. That is how she earned her fortune.

    My bad choice was being born to a narc mother as the scapegoat…

    CFS has also been a controversial diagnoses which means advocating takes more ferocity. I’ve had to fight like a tiger for proper treatment of real medical conditions (like a brain tumor) that were ignored as indifferent MD’s tried to throw anti-depressants at my symptoms. Its misogyny by the way that women are treated with antidepressants and men treated with an actual medical test. If I’d been privileged they’d order the right tests in the first place. Its vindication when a tumor lights up their MRI screen and you can think “this was what I was trying to tell you pompous asses”. Nevertheless I had a recent bad test that was being ignored, I was preparing to fight the fight but laid down on the floor instead and said “God, I can’t do this anymore, I can’t fight doctors for medical care I’m done” And I found peace

    A week later the doctor contacted me and said I”m going to follow up at that mass, tests are ordered now” Nothing had changed except God intervened as my advocate and I’d surrendered to it all saying “Lord if I die, I die, I’m done fighting” He took up the fight for me!

    Liked by 2 people

  2. Thanks for that link. I’m one of the 1 in 5 who’d report three or more ACEs. I always felt like I never had a chance and it is a comfort that this outcome is isn’t just singular to me to to many of us.

    CFS is more and more recognized and I find the younger doctors are already given some basic understanding of it in school. I have not been challenged on it by any doctor but if I were they would wish they hadn’t. I’d give him the list of life-altering symptoms that I deal with on an almost daily basis and challenge him back. When we who have been, and are, ill have had our lives decimated, it seems to be the line in the sand when it comes to any patience with tomfoolery from the medical community.

    But if I were still resisted and fearful for my life then I, too, would probably end up on the floor like you and let God know that at this point I have to let Him take care of it. And I’m so glad God changed that doctor’s mind for you about exploring the bad result further. I will pray for the best resolution of the issue with your continual peace throughout it.

    Liked by 1 person

    • Thank you for your prayers. One of the gifts from surviving the abuse is persistence when survival is hard ! I imagine if people in mds office dealing with chronic illnesses filled out a survey that asked if they were exposed the ace it be 100%. The public health disaster of narcs is staggering. Are they ashamed of the economic burden they create? No they are so busy blaming the victims of their abuse they haven’t the time to grow a conscience

      Liked by 2 people

  3. Hi Prarie Girl,

    I really thought CFS was a much more mild illness, and you’re right, simply because of the word fatigue. Fatigue does not do your description of it justice. I also didn’t know that it could affect your organs. When you explained that it had to do with insufficient energy for the cells, it made more sense. Do you ever use creative visualization to help heal yourself accompanied by some relaxation? You know, in your mind, imagine your cells healing and becoming stronger and healthier one cell at a time. Picture oxygen flowing into them. Things like that.

    I’m on disability too and have been for a very long time so it’s losing some of its value, but like you getting a cheaper mortgage, I moved to a cheaper state and it has made a nice difference. I basically had my life destroyed by a couple of psychopaths, even my body took a beating, and I don’t mean fists, but somehow I came down with liver and kidney trouble while living with them not knowing their diagnosis. I’m angry because I took pretty good care of myself and of course I’m not as strong as I would otherwise be. They also tried to hurt my femininity. Very mean stuff that I didn’t see coming at all. I never imagined such things. But that’s what they do, the unthinkable.

    I sought a very old friend I grew up with who became a Pastor and I found his words to be a comfort. One thing that helped a lot was when he said that we all have been hurt very deeply by sin. I thought that was good. It fit.

    Get your hands on all available resources to you that will help you to save your cash. I know a hospital social worker mailed me this photocopied list of all area resources for the low income folks. I’m wondering if some social worker could mail you such a list too so you can make certain you are taking full advantage of it because living as one is expensive I know. Two people can live almost as cheaply as one.

    I’m so glad you posted. You sound like a very sweet person and I was happy to learn your age, I’m one year older than you:)

    Liked by 2 people

    • There is push in the CFS community for them to change the name to something more descriptive of its pathology.

      I know there’s very little for me in this small town but there is home care here that helps with meals that I participated in just as I was determined to start getting a little better. I finally got the help to get nutritious meals that I had a hard time cooking myself. That was the beginning of my turnaround to being able to function a little better.

      Interesting to say that two can almost live as cheaply as one – it’s so true! That means, like you said, that it’s very expensive to live singly and to have to carry the same economic load that others have two people to carry.

      Thank you for your kind words, Ruby. I always keep a lookout for notifications for your blog – I enjoy reading it!

      Liked by 1 person

  4. My heart really goes out to you PG. I know exactly how it feels to be so on your own and have no idea of how you will stand up and feeling as though all the life energy is sucked out of you so that you cannot stand up and then having to take care of everything so having to push yourself but not being able.

    Its even harder when others cant recognise it. Accuse you of faking or something worse. I am so glad you can at least write about it. In the end in this situation when all relationships fail as they are so unhealthy or we are so fearful we cannot risk connection we do end up alone. And from that place we need to recover and understand. And on here you will find those who do. Sending you a hug today (-) Deborah

    Liked by 1 person

    • Thank you, Deborah, for your understanding and words! I’m glad I became aware of your blog and so glad to meet you.

      You captured the desperation of the situation well so I can see you’ve been there, too. Hugs back to you.

      Like

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