The Judgement & Scrutiny Of Living With Chronic Illness 

(*disclaimer at the bottom of article)
Judgment. 

Scrutiny.

 Those words immediately evoke feelings of negativity. Living with chronic illness is negative and difficult in itself, but have you ever stopped to think that almost every person batting a chronic illness also gets “insult added to injury” (literally) by being judged and scrutinized in everything they do?….. What they post on social media, every choice they make, every event they attend or don’t attend, everything they eat and every purchase they make? Yes. This is a huge part of living with chronic illness. 
   Can you imagine suffering from a condition and all of a sudden even “normal” activities and decisions come under the watchful and judgmental eye of everyone you know?
What do I mean? 
Example: “Shelley” suffers from chronic Lyme. All her friends and family know this. They know treatments are expensive and Shelley spends a lot of time at the doctor. Shelley also says no to a lot of family functions and activities with friends. Shelley also shares her struggles on social media and everyone knows she is struggling financially as well due to all her medical expenses. Some of Shelley’s family are very negative; they knew Shelley when she was active and vibrant and can’t understand how this sickness seems to go on and on without end. They think her posts about illness are attention-getting and that Shelley is needy, especially being that she is single and they think therefore she is trying to get sympathy. They think she is pathetic. Some of them let her know and express their anger. Some of them no longer speak to her at all.
Shelley also feels like she can’t win when it comes to socializing….
(NO) When Shelley says no to an event or dinner (or has to leave early or rest in the middle):
People think Shelley is being a drama queen again, or lazy, or being anti-social, etc. 
“She always says no so why bother asking”
“She is so self-absorbed with her problems. If she just got out more and acted normal she would feel better”
“Sickness has become Shelley’s identity. If she just stopped owning it she wouldn’t be so sick” 
“Shelley is not as sick as she thinks she is. Lyme is an excuse”
“Shelley has some kind of social disorder and is using sickness as an excuse”
“There she goes again, lying on the couch in the middle of a party. Apparently she wasn’t getting enough attention…”
(YES) When Shelley says yes to an event, or dinner: People think
“how can she be sick in bed yesterday and out today looking normal today?”
“She is such a liar, she said she couldn’t go out his morning and there she is tonight out with friends”
“She must be getting better, finally this Lyme thing is going away”
“You look good! You look healthy, you must be better”
“How can she afford to go out when she was just posting her Gofundme yesterday?”
“All this posting on social media about being sick, and yet when I see her she looks fine”
“Should she be eating that?”

You see I am Shelley. If you are ill and reading this, you are Shelley. And I know dozens and dozens of Shelleys that have the same experiences. 
Most people don’t think twice about going out to eat, taking vacations, hanging with friends, going to movies, buying a pair of shoes…

But when you deal with chronic illness things are a little different. Have you ever considered how much judgment someone who is sick receives? And this is on top of all the physical, emotional, mental, spiritual and financial suffering. 
That’s why I write. Because most judgment comes from naivety and simply not understanding. 
I have to deeply think before I post anything regarding my illness; TMI? Who’s my audience? Sharing info with fellow Lymies versus relatives that are going to roll their eyes at another health post?

Am I going to get negative backlash?

Are people going to get the wrong idea?
I also think twice before I post anything about going out, being with friends, or anything that has to do with spending money….. 

You see guy can buy new shoes if you need them without a second thought. But if I do I have to assess who might judge me knowing that I struggle financially. See what I mean? And I also don’t want to hurt that friend that I said no to yesterday when I felt super fatigued when they see me out with someone today because I rested and feel a little better.

I also struggle with guilt and and moral questions whenever I do something fun or spend a little money. Am I “allowed” to have fun? Can I justify a purchase for myself? Even though I am. It by any means extravagant (I rarely go shopping, buy clothes, and almost never eat out) I feel funny when I do and feel I have to answer for myself to everyone I know. 
Conclusion. 

This isn’t a perfect essay, and I didnt touch on a lot (including judgment and negativity from the mainstream medical community that doesn’t understand certain chronic illnesses), but there are tons of bloggers out there and they are doing a great job being a voice for this community. All we can do is try our best, and have an extra dose of grace as we raise awareness to those who would judge us. 
*Please note that this essay is on the topic of judgment and scrutiny; There are a LOT of kind and understanding people who do take the time to learn, ask questions, talk and give support. Thank you all my friends and family that fall in this category. 💚

  

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The Morning After (Payday)… Fun Isn’t Free

I did something yesterday, oh yes I did. Something normal, something fun.

I treated my sister for her birthday to go see Coldplay in concert. Firstly I had to make the decision how wise it was for both of us for two reasons; financially being that money is tight and medical bills are high, and whether I could justify using some of my personal savings on an extravagant birthday present. Second being that we both deal with chronic illness I had to weigh how much we would be affected by a long night out and take a gamble (being that I purchased tickets ahead of time) whether we would both be well enough to go when the event came. 

I went ahead and did it because Coldplay was here on the weekend right before my sister’s birthday (which seemed fortuitous) and she loves them enough I figured we would make it happen no matter how we were feeling.

We got nosebleed tickets (hey closer tickets were outrageous!), but it turned out fine because it was a great venue complete with fireworks, laser show, and audience armbands that lit up. It was fun.

My sister is happy and grateful and this is one the nicer gifts I’ve been able to get her. Thankfully also we are both having slightly better days with health the last couple weeks, meaning we can manage a bit more.

But, the reason I’m writing this is because this is a chronic illness blog, and as fellow sufferers know after fun comes….. pay day/days. 

It began actually even at the concert last night; I started feeling tired, and even in the middle of something fun I was enjoying I started wishing I could be home in bed knowing that even after this thing is over there would be a long walk to the car, sitting in traffic, and a long drive home.


This morning as I lay in bed writing this my entire body hurts..a lot. I’m swollen and puffy and completely wiped. Not only do I have the deep aching pain in every joint but I also have the deep tissue burning pain that goes with the autoimmune (Mast Cell/histamine) reactions of having some different foods yesterday.

Yes, this is “Pay Day”, and I know there will be more than one of them and I need to be careful the rest of the week.

So, is it worth it? I think so. Simply because I do things so seldom, and it feels good to be more normal once and a while; it gives me hope that one day the normal days will multiply and I can handle more, maybe even… gasp, having more than one activity on a weekend. We shall see.

For today though I’m glad my sister had something special for her birthday, even though she will be having her own pay days to follow. I will rest, recoup, detox, and try and make it to something tonight I promised some friends I would attend… yes, I am going to attempt two things in two days. Prayers appreciated 

A “Good Day” To Be A Lymie

Today is a good day; it’s currently 12:10pm on a Saturday and it’s still my “morning”, being that I’m still convincing myself to get moving and I haven’t done much yet.

I am coming off of several weeks of an antiparasitic/antiviral treatment that was pretty hardcore, and it was phase 2 having completed phase 1 the month before last. I feel like it takes a while for my body to reset and rebuild after the onslaught.  I had a UVBI blood treatment on Monday and I’m still not sure what my reaction is being that I felt energized the day of and not so good the rest of the week. (I was told I could experience some die off).

I’m tired. Even though I’m done with that particular protocol I’m still on a TON of supplements, and as of a few days ago three new prescriptions. Still have to deal with Candida, hormones and other stuff. I’m tired.  But body pain today isn’t too bad, fluid retention (my pesky persistent minion) is at about a medium. All things considered today is a good day relative to how crappy I have been feeling. I might even try and go for a walk.

I am mentally troubled this “morning” as I contemplate where I’m at as far as treatment protocol and what the rest of the year holds as far as medical expenses and whatever the doctors will want to do next. 11,000 went on the credit card just the last 6 weeks for our family’s medical needs 😳

That said; I got confirmation from my main two doctors this week that the protocol to kill the viruses and parasites was very successful and I’m in good shape as far as that goes. Which leaves the remaining battle being the autoimmune disorder factor in this long-term disease, and that’s been a huge battle. 

Bottom line my body hates itself and I hate it. Not a happy cohabitation. So my Mast cells and histamine, cytokines and gut all need to decide to start getting along or my slow decline into self-destruction will someday be successful. 

That said I am hoping that the remaining months of this year will see big changes, that I will start to experience what “normal” feels like, and that next time I have a “good day” it won’t be in parenthesis because of relativity, but “good” will actually be good


Lyme Fund

Being Real

I wanted to speak to all of you from the heart for a few minutes (besides a health and circumstances update). I know that my posts can be a little wordy, but if you can stick with me to the end I would really appreciate it. I have had some serious ups and downs recently, not just physically but emotionally, mentally and spiritually too, and that is something I am going to try and be raw and real about.
As you all know these health difficulties have been plaguing myself and my family for decades, but especially my sister and I. And with this recent setback (again) it is so easy to feel depressed, lonely and hopeless….
Today on this sunny Saturday I think of all of you out there, socializing, having fun, seeing friends, being outside, doing things…. living normally. And for me this morning my POTS is acting up and it is hard for me to even stand without feeling breathless and weak and having waves of heat. (More on POTS below). Another day of my life sacrificed to the Lyme gods as they accept my life as an offering one day at a time (please no one be offended by this little metaphor). 
So this is going to be another in a long line of weekends for me basically in bed resting. I have given about 2/3 of my adult life to this: go to work, go to bed, repeat. I’m back in that cycle where I have just enough strength to work my part time job….and not much else. I call these cycles many things, including Survival Mode and the Chronic Illness Coma. I feel isolated, forgotten, left out and lonely. I keep seeing the years of my life tick by and my life eroding away, with opportunities disappearing on a fading horizon. 

Try and picture for a moment if this was your life for years and years, and you found yourself in your late thirties having your youth behind you having never properly experienced it. You are alone. You’ve never had a significant other or even an opportunity to get one, and you watch most of your friends live there lives from a distance doing “normal” things that you have never experienced and are not normal for you.
I had a very bad weekend last week; besides having a scare and being in the ER on Saturday, I was also very depressed and the enemy saw an opportunity to open a wound. 
The mind can go down Dark rabbit holes so easily: This isn’t living. Alone. Single. Sick. Struggling. My brain and body betray me. Thinking about eventually having my parents die and (gulp) Shiloh in time, and being utterly alone and destitute with no one to be a support is not a fun thought. I also feel like I am such a financial burden and my parents would be so much better off and more secure if I just died. (That’s a major one Satan like to come at me with). 
Thank you to a couple friends who encouraged me last Sunday and reminded me who I am in Christ, and who just listened and let me be real with my feelings.

That said, I am peeking back out of that dark corner and God is reminding me that faith and Who He is for me and His power over my circumstances have nothing to do with my emotions or mindset or the infections in my body and brain that are effecting those things.

After all, faith is all about what we do not see, what we do not feel, and relying on He Who dwells outside the shallowness of those things. 
Why did I share all that? I don’t think it’s because I want pity. I want to be normal, I just want to live, I don’t want to be a person that needs pity! No, rather I just want to be heard and understood and I feel like when I drop off the face of the earth that I don’t do so to the people in my life as well, and I’m just forgotten. 

I do want to thank the couple people who do stay in contact with me, it means the world. Just a text, just a “hi”, nothing fancy, just knowing I’m not forgotten.
Why The Chronically Ill Post TMI

Thank you so much for reading this far.
As far as myself and my sister Holly as you know we are going through treatments right now to deal with some deep parasitic and other infections in our bodies that are not only gut related but are attacking our livers, kidneys and other organs too, and the treatment has been rough. I just did my retest lab work this last week to confirm what infections remain after phase 1 and how to approach my Phase 2 in this next round of treatment. I have had it confirmed that (among other things) I do still have Bartonella: What is Bartonella & its Symptoms?

 Babesia: What is Babesia & its Symptoms?

which are the two major Lyme coinfections. 

My POTS which is usually mild also goes to more of a moderate degree when I have a flare up, and that’s been difficult ( Lyme & POTS )
My sister and I could use prayer that these treatments work, and that maybe this will be the beginning to the end of this multi-decade battle.
Lyme (collective term for Borrelia, coinfections and complications) is so hard to treat because it can change form, hide from the immune system, be antibiotic resistant, cross the blood-brain barrier and infect any and all parts of the body, and treatments are basically going layer by layer, getting deep stuff to come to the surface, and repeating the process. 

A good metaphor would be weeding a garden: you pull weeds, you rototill, you use poison, you pull up roots and do your best with what you see. But you miss a few roots, you can’t always identify every weed, and the “poison” ruins the soil so you have to keep replenishing as you’re killing, and just when you think you got it all…. you find there’s stuff you missed that starts growing and taking over again.
Here is also a good link on why treatments make you feel worse: What is a Herx?

Wow guys, thanks for sticking with me and hearing me out! Even with all that writing it is still just a summary. 

Please also pray for God’s financial provision as for this season expenses have again skyrocketed into about 5,000 a month.

I have been unable to paint again, and that has been disheartening. If anyone has any clever ideas for fundraisers let me know! (It would have to be in the realm of my capacity). 

Steidl Family Lyme Fund
Jennifer’s Lyme Fund
Thank you again for taking the time to read all this. 

The Things That Slip Away….

My posts usually start with a moment of introspection; today is no different. I was standing in front of the mirror and happened to look at my ears, and what I noticed (not for the first time) was that my piercings have grown in. I sought to try and remember the last time I wore earrings and surprisingly I realized it may have been as long as a year or two. The significance of this is that it is just one more thing that would in different circumstances be just part of a normal routine… a no-brainer part of life. 

I don’t think many people understand how drastically different the day to day life of a chronically ill person is and I am realizing what is lost is in the small things. You see people may understand when illness keeps you from not attending events, not being as social, tiring out easily, the limited diet and all the rest, but I think they may not comprehend how the life perspective of an ill person is so very different and how daily life has been stripped to it’s bare bones and what is lost is all the small things. 

If it’s “extra” it doesn’t happen

So I’m a girl and many things I may mention are specific to my gender (after all guys let’s admit we are higher maintenance). 

My routine when I am going to leave the house is not what it once was. I remember the days when I spent more time on my hair, when I wouldn’t leave the house without full makeup, when I actually put thought into an outfit and (gasp) yes used to have a decent fashion sense.

This isn’t true anymore for a few reasons; apathy/lethargy/indifference/listlessness/dispassion/detachment… fatigue. It is that thing I have talked a lot about I call survival mode. You just shut down and live one foot in front of the other, shuffling, not running or thriving. I am learning that beyond just chronic fatigue and brain crud there are some real physical reasons for this apathy/detachment that accompany long-term illness, but that’s not the point of this post, rather it’s the effects of this on your life.

💠I can’t recall the last time I used a flatiron or curling iron. 

💠I almost never wear lipstick.

💠I almost never think about jewelry, much less bother to wear it.

💠I do pretty minimum with makeup just enough to make sure I don’t look heinous. *

*accept for some doctor or IV appointments, when I don’t care so much about looking heinous.

💠Personal hygiene suffers. No I don’t mean I don’t keep clean, but anything extra like plucking eyebrows, shaving, taking care of my nails and other stuff doesn’t happen.

💠My shoes only get changed and replaced when they have holes in them. 

💠I haven’t enjoyed clothes for years and I don’t like much less enjoy anything I wear. Clothing for many years has been about nothing but covering up my edema and the parts of my body that betray me. And it’s not like I have extra money to buy much in the way of clothes anyway. 

Confession: I am never comfortable in my body and it is almost it’s own entity that I am tied to with no release. It’s constant pain in varying degrees, the water retention is a constant source of discomfort and embarrassment and even if you think you have my full attention when I’m with you, you don’t. A piece of my mind is always occupied with my physical self and the aforementioned manifestations. 

There is probably a lot I’m not thinking about right now, but I guess I am just getting to convey what bare minimum looks like for the chronic illness sufferer, and how there is no such thing as fullness or completeness, everything is only a measure including your access to yourself. 

We are all only pieces of a whole, percentages of 100, slices of a pie. You may not see much of us or get 100% when we are with you, but we don’t get that from ourselves either. It’s all those little things that have slipped away….

❤️Facebook❤️ A Window To The World

Well love it or hate it we are over a decade deep now into the online social network that has taken over the world. And I wonder… What did we do without it? Yes yes I know some people still refuse to have a FB account, some people get frustrated and deactivate it, some people complain that it has taken the place of “real” interaction: And if you hate it that’s totally fine, because Facebook is highly subjective; It is made entirely of who you friend, what you follow, who follows you, what  you choose to post and how people respond, and visa versa.

 You want an online boxing ring? You got it; just post highly controversial and political stuff and rant and rave and argue with those that disagree. You want just a way to communicate with a few chosen friends and family members who you don’t see often enough? No problem; keep your circle small and keep subjects personal. 

This may be a slight over-simplification And I am not saying that this formula is perfect, or that negative things won’t happen in the FB universe, because they do to everyone at some point. For example, I got viciously attacked recently just for re-sharing a news story on a hot topic, I didn’t voice an opinion mind you simply shared a news piece… And someone who I hadn’t seen in person in years ripped me apart and actually called me human scum 😔 Wow. Needless to say that person is no longer my “friend” and has been blocked.

But getting to the point of this post: I opened my WordPress app lying in bed this evening prompted to write this because right now I feel like poo poo; Despite waking up late on a Saturday and taking a good two hours to “get rolling” I only lasted several hours before my body and brain just started shutting down and I had to go take my (currently) daily nap. I woke up and it was after seven pm and I’ve done almost nothing today and still feel too tired to do anything this evening. So (of course) I hop onto Facebook to see what the rest of the world is up to (I admit to logging on multiple times a day). But there they all are! Living! doing stuff! being normal… There is a picture of a friend’s new born baby. There is a post and picture of a friend’s new craft space. There are photos of a friend and her kids having a great day. There is a funny video of a cat 😆 Posts, upon posts, upon posts, of life happening. And of course for those that share my world, there are the Lymies; their petitions for prayer in their struggles, questions about new treatment protocols, brave self-videos letting it all hang out there publicly to raise awareness and/or to cry out for help, to ask for understanding…..    And after spending some time interacting, liking, reading, messaging  and sharing, I thought “what would I do without Facebook?” 

Over many, many years of illness and ups and downs (though focusing on the downs for the point of this blog) Facebook has been my window into life itself; I can’t even count the accumulative time that must add up into years of just sitting in my room, on my bed, isolated. I am here all the times inbetween working hours and (those up times when I get to do stuff with people) this is where I spend my life. In an approximate 10X10 room alone. 

I have heard personally from people who suffer from illness or just plain lack of funds how FB makes them bitter seeing all the “positivity” and observing other people always seeming to be doing things and going places. I have to admit before God worked on me in this area of my life I used to be horribly bitter and in a constant state of grief over everyone else who got their normal lives and got to progress through the normal stages of life while I seemed to be left behind in a time capsule, only it was the cruelest kind of capsule because life passed me by but I still aged inside with none of the benefits. 

Long story short, God did a work in my heart in repenting of grief, discontent and mourning and stop giving every new day over to negativity. I will quickly say that I do still have days like that, but they are no longer a state of being and they don’t linger if I give myself back to the Lord.

Where was I going with this? Oh yes, so Facebook has become my way of seeing and talking to my friends that I don’t often/never see and staying in touch with people that would otherwise be lost forever. Like That event I was invited to but couldnt attend? Well there on FB are photos of all my friends who were there and what happened. I can still feel a little apart of those things I couldn’t be at, and it is actually scary for me to think how dark my world would be without FB. 😱

You know what else? For the chronically ill community FB is nothing less than completely empowering! We have forums, we have pages, we friend each other, we offer support and love and help to each other in our suffering and offer empathy where no one else could understand. I think what is one of the most amazing aspects (when you are sick with something that is so hard to treat and misunderstood) is the openness of fellow illness sojourners and the sharing of new treatments, research, articles, new protocols, Doctor information…. It goes on and on. I have actually presented info to my own doctors that other Lymies have shared that they have used to help treat! This is actually how treatment and information regarding chronic Lyme is growing and moving forward; it is the power of the online community. Really! I have even had a doctor tell me that it’s the bloggers who are moving information forward with chronic Lyme.

Thanks to Facebook I have also made some dear fellow-Lyme, fellow-Christian friends. Dear sweet people some of whom I have even spoken on the phone with and prayed with. I have to say some of the dearest Christian women I have met are those that not only love Jesus but have suffered so much and continue to suffer. The difference is that they let their brokenness have its perfect result in self-refinement, stronger empathy, greater love and letting themselves be used for His purpose. 

So thank you Facebook; (ignoring all the hate and the arguing, the negativity and the stupidity, the vicious attacks and naive hatred…. )Thank you for letting us connect, for letting us share and be real, for being a platform for the chronically ill, for letting us see life happening all around us, for letting us support each other and lift each other up in times of crisis, and thank you for no end to funny cat videos 😸

And thank you to the people who use Facebook for good and not evil.