The Cold Shoulder Of The Body Of Christ

Having recently had fresh conversations with others with long-term invisible illness I thought I would post this most excellent article again.What is completely disappointing and devastating beyond just the illness is the hurt you can experience from the friends and family that either don’t care, or treat you as an annoyance, or possibly even think you are lying or just whining. They ignore you, belittle what you are going through, or pretend it doesn’t exist. What is a common experience of those who suffer long-term illness is that people don’t understand why you don’t get better, why this never ends. That’s when the accusations come that you just want attention or its all in your head. I have heard this from literally every single Lyme/invisible illness sufferer I have ever been in contact with. 
This is even more devastating because from my personal experience this also comes from the Body of Christ. 

(****Before going on I will write a quick disclaimer that I/we do have some wonderful caring Christian friends that DO walk out their faith and are genuine in love and taking action. There ARE amazing Christians and churches out there that are living for Christ).
These are the same Christians who do their daily Bible studies and attend church regularly. They talk about returning to what the church should be, which if you study the early church and what Jesus commanded (and put into practice Himself) it was about coming alongside each other, being “real” in each other’s lives. Coming alongside the hurting, the sick, the destitute… They did not have church programs, festivals, worship bands and entertainment. It was not all about bake sales, the new women’s devotional, “Christian” scrapbooking or just doing the “fun” part of Christianity. It was following Christ, sharing the Gospel, actually loving your neighbor as yourself and living sacrificially. 

No they weren’t perfect, the early church was messy. And no there is nothing wrong with programs and fun stuff. But when a church and individuals focus on those things and spend all their money and time on those things and blatantly deny or ignore those in real need, there is something seriously wrong. We have lost our love whether we think we have or not. 

It breaks my heart when I hear that my father (who is an attendee of a large church and even a teacher there) reaches out in prayer request saying he can hardly bear what he is going through anymore and receives no response from anyone. that devastates me. Also when mega churches also tell you that they refuse to help your situation because they want to keep a non-profit status, and that its your responsibility to get help from friends, they have just tipped their hand and told the Body that “we are no longer the Body Of Christ, we’re a business”.

That’s it folks, churches are now businesses operating in a corporate world. They don’t necessarily provide support, they don’t necessarily have people even to come alongside and pray and help. We focus on programs and ignore people.

God is not dead but I am afraid a lot of His people may be. 
This is something that I have been contemplating for years; the void, the hole in the church, and apparently the church has taught it’s people well because I don’t think a lot of Christians are even aware that just saying a quick “I’ll pray for you”, and then walking away and not giving it a second thought isn’t (or shouldn’t be) normal. At least not normal being in Christ. Churches in persecuted countries are completely different. 
Returning to personal experience I am grateful that I have experienced the cold shoulder from some friends and family and the Body; because it has revealed my ministry to me and what I want to do to help others, and what I do now in my limited capacity with fellow Lyme sufferers. 

May God someday grant me better abilities and resources to help fill the gap in the church and minister specifically to the sick and suffering, the ones that most people ignore or don’t understand.

Do I fail people? Yes. 

Am I perfect? So far from it it sickens me. Have I come off as cold, uncaring, listless, not present, selfish, unsocial…..? All the time! And I feel guilt about it everyday. Not until you experience the personality changes that spirochetes and other bugs can cause would this make sense. 

But I also recognize that I get glimpses of who I really am in times I am doing better and I am a better worshipper, better friend and a better support to my fellow I.I. Community. Once and a while a person who is newly suffering from something will tell me how much new appreciation they have for chronic illness. Would that everyone came to that understanding without having to suffer themselves. 
Quotes from this article: 

“One of the most difficult things about being chronically ill is that nearly everyone finds what you are going through incomprehensible. Healthy people, as you quickly become aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you. When it is you, in your loneliness, in your forced preoccupation with enduring your new reality, you ache to be understood in a way that you can’t be.”
“Regardless of the duration of your illness, survival depends on learning to build something new from your different reality. If life is a canvas then chronic illness only gives you one color to paint with. ”

 An Essay On Chronic Illness

No Day But Today

New Hope Beyond

A long time ago I made a decision to use the word “love” a little more freely.  That decision came with another which was to not let concerns of what others would think of that get in the way of expressing that love.  For example, if it was a female friend then she would get that the “love” was within the context of loving a fellow believer in Jesus Christ, love like a sister that I never had, and possibly a bond that simply comes with walking through many years of life’s ups and downs together.  The transition would be instant, from “Take Care” at the end of an email to “Love, Julie” if we had just endured a crisis together.  When one heart is hurting, there is no other word that will suffice.  Love covers things well.

Born again believers know the author of love as God himself.  The…

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Spaced, My Current Frontier

Do you know what I hate more than the fatigue, more than the body pain, more than the fluid retention, more than just feeling icky all the time? I hate the feeling of being spacey, especially in social situations. That feeling of almost alternate reality, that you’re not quite there. What stinks the most is that sometimes you are very aware of it; that you’re slow to respond, that you mumble your words, that your answers don’t always match the question. 

I also get really sensitive about what people must think. Do they wonder if I am being entitled? Being bitchy? Being unfriendly? Being antisocial? Being horribly shy? Being uninterested? Whatever is going on, I just hate that feeling of disconnect.

Do you know what I hate more than all of the above? It is that for several months I was doing a lot better. I had for the most part for some time been feeling a lot more normal with my cognitive symptoms. But just the last couple months I have been feeling a lot worse again and things are more difficult as far as thinking and communicating. 

And the fatigue, the fatigue. I am sure this downturn is due to several reasons that I’ve mentioned in past blogs, and probably reasons I don’t understand currently. I am sure this is also going to be short-lived ( I hope). But for now all I want to do is to get back to that feeling of being able to laugh and talk and enjoy friends and not feel that sinking in my bones and muscles, and that fuzzy cotton weight in my brain
*image of Nemo just because 🙂

Is Lyme The 5th Dimension? Or, The Facets of Fatigue

I woke up just a little bit ago from what has become the usual afternoon nap, feeling heavy, toxic, groggy and doped up. I have that lingering feeling of fatigue that sleep does not seem to reach.

When did I become a napper? Even in the worst of my Lyme I have never been a person who can sleep well in the middle of the day; that constant buzzing brain activity keeping me awake no matter how tired I am….that brain that even keeps me awake during the night when my sleep-deprived body is trying to shut down. I am trying to remember when that changed, sometime within the last several weeks or months I think. I know that the last few weeks at work I spend the day caffeinating myself within an inch of my life and counting the hours until I can go home and crawl into bed.

I guess the good part is that I have also for the first time in my life (without ambien) been sleeping better at night as well. I think it is thanks to an extra dose of this little guy on top of my Zen, prescribed by my ND  

Who is a genius by the way. I have had trouble sleeping since my body entered this mortal toil.

In any case the Lyme journey is interesting in that you realize that there are not enough words in the English language for fatigue; I have had deep discussions with fellow Lymies on this subject and we seem to be in agreement. Fatigue is now a catagory with at least half a dozen subcategories, or levels if you will that you can start to identify by their nuances, kind of like the 10 point scale an RN gives you for pain.
*(Please note; all levels given here still fall under the catagory of “but you don’t look sick” and “you must be feeling better because you look well” by the outside world, who do not understand Invisible Illness/Pushing Through/Trying To Function Despite and My Good Day Would Be Your Sick Day.)

1. 😐 Meh. Getting by, managing, functioning, but underlying malaise and general apathy which can easily be disguised and overcome with a smile. 
2.😕 Bleh. Very much like level one but more underlying sleepiness, heavy limbs, still functioning but it is like wading through mud.

3. 😒Whahh. Insert all of the above only into limited hours of the day. May possibly spend most of the day resting, sleeping, being “lazy” to then emerge magically into Bleh or Meh for work or other activities.

4.😑 —–. Malaise, fatigue, walking zombie. Going through the motions, functioning (sort of ) in that you can get your body in motion and move through survival mode, but you promise no one that you will remember any of this….

5. 😵 whonk. No I don’t know what that word means, but it sounds like something hitting the floor. This is a day when you sit on your bed until one in the afternoon willing yourself to stand up, trying to work up enough moxie to just get yourself into the shower. I’m not sure if it’s because of POTS or not but I hit “whonk” fairly often right after a bath when I have drained the tub and have to stand up again. I look forlornly up at my towel and robe and standing back up just seems like too much effort. For Lymies whonk days are the days in between Meh, Bleh, Whahh and —-. These are the days you don’t see us, the days we bail on social plans last minute because our shoes are across the room and mock us with the distance. Remember even though we usually “look fine” and can pretty much overcome some Meh and Bleh days you don’t get to see us when we’re whonked, and we think the greatest invention in the history of the universe is the tv remote because it involves minimal movement and provides maximum entertainment.
So I hope you enjoyed my little off-the-cuff fatigue chart. Please note that any day can contain any of the above or combinations and anything in-between. Also please note that friends and family observing the functioning Lymie may not realize that even through we look fine, strange behavior, inappropriate responses, seemingly anti-social behavior, or just plain quietness or unresponsiveness can more than likely be attributed to the above. I know sometimes I will think back and realize I didn’t answer that person, or realize I spoke inappropriately or just came off dumb or unfriendly. It happens. We still love you, we still care, life is  just getting filtered through Meh-Whonk. 
My nap buddy ☺️ 


Magic Beans

Jumping right back into work without rest after my trip plus having all my edema and systemic reactions has been terribly fatiguing. Here I am needing to be super strict with my diet again and needing to cleanse, restore and calm down histamine and mast cell stuff, and/or iGg, and yet fatigue at work has been so bad that 24oz matcha lattes, energy drinks and regular tea aren’t helping to peel my face off my desk.

Even though I’m iGg reactive to both coffee and chocolate I have again been relying on “magic beans” this week just to get me through. Alas riding the wake of wakefulness (ha ha) are swelling, tingling and pain 😦   I can also feel adrenal fatigue from being shot up with so much caffeine.

Hopefully I can get back on track soon and let the only magic beans in my life be the beanstock growing kind.

cacao and coffee