Secret Fears

Or perhaps not so secret.

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70% of marriages in which one spouse has a chronic illness end in divorce.

What if you wake up one day and your significant other has decided he/she has had enough? They just cannot deal with your issues any longer. They want to live a full life and you are a hinderance. They need someone who is able. Someone who can bike or run or move. They never get invited to activities because you can’t go and your friends don’t want to invite just your spouse. They no longer want to sit in an empty pew or empty row.

I’m afraid because I completely understand how that could happen. (We live with ourselves, too.) And it’s not wrong to want those things. We want our other-halves to live life, to be content, happy, fulfilled and sometimes, we’re afraid we ARE a hinderance. We tend to live with a lot of guilt – unnecessary or not.

And we feel bad for feeling guilty. Or for even entertaining thoughts such as this post. Or for suggesting our spouses would get tired of us. Or for thinking they’d be the bad guy if they left. We feel bad for feeling bad about being unable/disabled. We don’t want to claim “victim” but sometimes we do. Because that’s true, too.

It’s an all-around crappy situation. No one is wrong and everyone loses. So we hide our fears. Watching ourselves become blobs. Sometimes not feeling because it’s easier to be numb. Hoping that when our partner says, “I love you and want to care for you,” that the desire to do so will last 50 years. Secretly afraid it won’t. Not because we don’t believe them but because we know it’s hard and it sucks to be shackled to a spoonie.

How do you handle such fears?

Acceptance is a broken record

Every day I have to re-accept the terms my illnesses lay out for me. It’s continual. I don’t live in a democracy, I don’t have a say in anything. Ultimately, my body is in control.

No, I’m not being obsessive. Nor am I being negative. These are the facts. This is my reality. Every day. Minute by minute. Acceptance is a broken record. They’re always there, these illnesses, demanding attention.

I have to come to terms with my new “normal” on a daily basis. Some days are easier than others. Some days I cry because cleaning the bathroom has worn me out so much I feel sick. And I don’t want to accept that.

Yes, there are things to help me cope with my pain, but it never goes away and that is the part that is hardest to accept. Chronic is a heavy word.

I am very thankful for my husband because he makes accepting easier. Understanding is worth more than pain killers.

I do what I can when I can. But it’s still hard, not being able to just do what needs to be done because my body will not cooperate. Having to lie down all day because my body has decided it’s too painful and too tiring to sit up. Being unable to do what others think will help me feel better, such as exercising or getting out of the house.

Being judged or labeled or misunderstood is very hard to accept, but its part of the package. Losing friends and freedom. Being unable to explain anything so they might understand. Sounding like a broken record. Sounding like all I do is complain. Having to cancel plans at the last minute. Have I mentioned sounding like a broken record? Yeah.

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Lost

Humans are selfish, it’s just the way things are. We cling to false hope and love with grubby fingers expecting miracles. But we want it on our terms. We want peace our way, love our way, hope our way.

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And its not until we’re lost that we can be found. And we get lost over and over and over.

I’m at the bottom of my well, lost in heavy, thick, black. Sometimes it feels like I can’t breathe and everything I wanted life to be is piling up on top of me. False hopes and love crushing my very lungs. I reach up and up and up to a Voice that promises real peace, real hope, real love and I hold on to that because that’s all I can do.

I have no answers, no reasons, no explanations … just a distant Voice telling me to “hold on.”

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You will be stretched. Your soul will ache. Hurts will haunt you in starless nights, yet the Voice remains. Sleepless nights with endless tears wondering why, why, why. And the Voice whispers, “hold on.”

And I realize this life isn’t about me.

How To Be

I had a blog post all ready to go about being happy.  And I realized, you know what? Who am I to tell others how to be?  I haven’t arrived.  I’m not always happy and joyful and at peace.  A lot of the time I’m anxious and spazzy.  My moods change like the weather in Michigan (often.)  I’m not perfect.  I’m still learning.  I will be until the day I die.

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But what I have learned is it’s okay to feel all the things.  It’s better to express them and get them out there than to keep them inside and either explode or become numb.  Those are not places you want to be, my friends.  I know.  But don’t stay there.   Try to choose thankfulness because therein lies happiness.  Happiness, like love, is a verb.  A choice.  (I’m not talking about people with chemical imbalances or medical issues that cause them to feel things they have no choice in the matter. I have clinical anxiety – which means I cannot control when the anxiety comes, but I can make choices to help lessen it.  Some can’t and that’s all right, too. )

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Be thankful.  For all the things.  For all the feelings that make you YOU.  Celebrate happy.  Celebrate thankful.  Be sad or angry or broken, but don’t stay there – don’t drown. Feel all the things, then make a choice on how you WANT to feel.  No, it’s not that easy.  Nothing in life comes easy.  If you want something you have to work at it.  Same with happiness.  Start with being thankful.

 

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Count your blessings.  I’m sure you have more than you know.  Take the Joy Dare, keep a gratitude list. Apparently, it could increase your happiness by 25%. :)  Feel all the things and give thanks.

 

What’s wrong with her anyway …

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What’s wrong with her anyway? 

Well, that’s up for debate.  My husband gets asked this a lot. He doesn’t always know how to answer. I don’t either, actually.

Do you want specific diagnoses? Do you want symptoms? Maybe you can just figure I’m nuts. Or maybe you think I’m just “not a morning person” or that I’m lazy or whatever. It’s fine with me if you’d like to make assumptions. Just don’t share them aloud, thanks.

I don’t think I have any diseases. At least, I wouldn’t classify them as diseases. Although, Webster’s Dictionary might:

dis·ease

noun: a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.

You want the long list or the summary? Basically,  I suffer from chronic pain, chronic fatigue, chronic migraines and chronic digestive disorders, and my immune system is out of whack, probably my hormones are too. There are a few other things thrown in there, but that’s a basis of it.  I need to be near a bed & bathroom 95% of the time.  I have been diagnosed with Fibromyalgia, Chronic Headaches, Chronic Migraines, Chronic Fatigue, IBS, RLS, Acid Reflux, Hypoglycemia and Orthostatic Hypotension.  My doctor suspects Endometriosis as well, but she wouldn’t test me for it because I can’t take birth control (risk of stroke because of my migraines).  Her words, not mine.

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She looks … normal.

Yep, I do. Although, I think I look like a zombie on most days, but everyone says I look fine. Looks can be deceiving, haven’t you heard that? I’ve lost weight from various illnesses and then gained it back. I don’t have a “sick” look. I look like everyone else. That is why Fibromyalgia, Migraines, Chronic Fatigue and Irritable Bowel Syndrome are referred to as “invisible” illnesses. There are varying degrees of these illnesses and some people are bed-ridden or need a wheelchair to get around. Fortunately, God has spared me – for the most part. I own a cane, but I’m too embarrassed to use it, even if I need to. And there are many days that I spend in bed. There are many hours spent on the toilet. Many hours spent groaning and moaning because it hurts. It really hurts. I can’t even explain the pain other than to say it’s stupid and ridiculous. When I seem most normal, I’m still living at at least level 4 pain. Sometimes I can be “okay” one minute and the next be in extreme pain or have to run to the toilet. There is no rhyme or reason to any of it. Yes, I have “triggers” and I try to avoid them at all costs, but frequently, I don’t know why it jumps out of nowhere.

Why doesn’t she try changing her diet? Or <insert whatever else here>? Or find a doctor that can treat her?

I have. I have tried countless things to help with the symptoms of these syndromes (<–hate that word!) I have. I have not yet found anything that helps. Doctors, helpful doctors? Are there such a thing?

I know <insert person> who has <insert whatever> and they do <whatever> and they’re fine. Maybe she just doesn’t want to get better.

Maybe they hide it well. There are varying degrees of these illnesses. Some people have very mild symptoms or have found things that work for them. It’s not for my lack of trying, believe me. Whoa, I don’t WANT to get better? Never accuse me of that – even though I’ve come to accept this.

I honestly do not want your pity. Prayers are always welcomed. There is no cure for any of the things I suffer from (even if there are websites or “doctors” that claim there are.) This is something God has allowed in my life for a reason. I wholly believe it is not ever going to go away. They say “everybody has something,” well, I have a few somethings and that’s okay. It’s all right for me to be ill. It is. I may hate it. I may object loudly and complain, but it’s okay. I’m human and broken. God has allowed this to be my life to teach me to lean on Him … and I’m still working out the other reasons. God’s ways are not my ways.

How can I pray for her? (Bless you for asking.)

Strength. Endurance.  I’m only 38 (well, I will be on the 17th) and knowing these things are chronic … Pray for my husband, for my kids – for strength and understanding and compassion.

What can I do?

Send presents. No, seriously, prayer is the biggest thing. Other than that, you can connect with me on Facebook or via email.

 

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