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Living a half life

It’s 5am, I’ve been up since 2:30. Another night of insomnia where my mind and my body are betraying me again. My brain won’t shut down, and I’m having waves of heat, systemic irritation and an upset gut. My buddy edema which never leaves or forsakes me is also having a great party.  I have to get up at 7:30am for work and I am hitting a wall right now physically, mentally and emotionally. 

How do i keep going on? How much more of this can I take? And with this emotional crash comes all the old hurts and devastations, anger, garbage and the “lies” that are really true but just a matter of perspective (is my liver causing me this crisis?): I am such a waste of a human being. I’m a black hole in a world of people who have value. My health has cost about 100,000 and where am I now? Am I living and thriving? No. Do I believe the doctors that say they can help and keeping pouring money out while I still live a half life and feeling like crud, or would it be better just to stop everything and give up?

My body is angry. It likes being angry. It likes to punish me for every bite of food I eat. It likes revenge for any bit of fun I have or energy I expel…. The only difference is in degree. So I made myself soup tonight all healthy and diet friendly, save maybe for garlic. Is this the way it’s always going to be? A night of sleeplessness and misery for something stupid like eating a little garlic? 

Why won’t the fluid retention/autoimmune/pain/fatigue get better? Is it mast cell like we are exploring now? Is it lymph virus? Toxins? Liver? Kidney? Pancreas? Spleen? Leaky gut? Celiac? All of the above? Parasympathetic nervous system?….

I have been told all of the above, treated for all of the above and more (and we’re not even talking about the Lyme and coinfections anymore). 

What hurts right now is thinking about all the normal people who live “whole” lives and don’t know what it’s like to live with access to  pieces of yourself, to never be whole or wholly alive. On your good days skating by at 70%, having to choose between obligation and everything else that makes up life. Obligation always wins and then years of your life just pass by and you find yourself in the south side of your thirties and possibilities for the future keep narrowing with every passing year until they are a pinhole and the things you have never done and never experienced far outweigh what you have, and I’m not even talking about big bucket list stuff… I’m talking about life experiences most take for granted.

A tear just fell on my pillow. I know tomorrow is another day and I know realistically I will not be so negative when I’m not out of my mind with lack of sleep, grief and discomfort. It’s just tough as I am getting another wave of heat and agitation thinking about a full day of work on an empty battery…

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When You Find You Are U.I.I.S. (Undatable invisible illness sufferer)

This one’s for the single ladies (or gentlemen) who find themselves not only chronically sick, but chronically single.  I almost titled this post “girl interrupted”, but for me it’s not like I ever had a steady healthy life to interrupt, it’s more like health troubles have been the gremlin to the airplane of my life since my teen years.

Tonight for reasons I cannot even reconcile to myself, I started watching one of those “reality” (cough) dating shows tonight. I really hate most of these shows because they are not anywhere close to reality, the men tend to be immoral, shallow, narcissistic… The women are trashy, vacuous, desperate, catty….. 

I will only say I am watching (hopefully) a slightly better one on A&E, but still… This behavior is unforgivable. As I watch these people who for their own various reasons subject themselves to the world of online matchmaking, it made me think of loneliness and desperation and the lengths people will go to to find love and companionship. 

Being chronically ill can be incredibly lonely, whether you have close family or not (thankfully I do❤️). And like I have talked about in past posts most C.I. People see both friends and family walk away as illness goes on. Even if you are somewhat functioning that doesn’t mean that dating is easy or possible. Most people have avenues to meet others that would fit their criteria for a significant other. But what about the chronically ill? Even for the “functioning” chronically ill this may be close to impossible.

I function; meaning I am not bedridden and I can hold a job, that doesn’t mean every day isn’t a struggle, but I do. But functioning in what’s required of me means sacrificing everything else, and a lot of the time there’s not much left of me. What is hard to navigate is that I seem to have a few months every year when things seem pretty good; I have better energy and start being social again, being able to exercise, and feel reintroduced to my own humanity. It’s in these times I think “well maybe I can start to think about finding someone”, but then inevitably things take a dive again and I go back to survival mode, bare basics, just getting by. For me I took another dive right at the end of May and I had to start saying no again to social activities and almost everything outside of working. 

How does one date a hermit? In my personal experience I guess they don’t.

SO WHEN YOU ARE SICK YOU: 

YOU CAN’T MEET ANYONE

Firstly you would have to actually meet someone. But how if you don’t go out? There are no weeknights out with friends. There are no group social activities. Church attendance may stop. Any weekend activities like hiking or day trips may be too much. And what if you feel like you both look and feel like crap and just the stress of even thinking about getting yourself presentable and putting on a good face is too much? It’s so much easier just to sink back into isolation because self-care and life period is enough to deal with.

FACE IT, YOU ARE HIGH MAINTENANCE 

If you are chronically ill it is exhausting being you, how much more so for those closest to you? I see how close family is affected by the ones they love who are ill, and it’s a horrible strain, especially when there’s no end in sight. But these people already know and love us. It takes a long, long time for new friends that come in to my life to “get it”, even the ones who are sweet and understanding have a hard time grasping that what are normal activities for them, even their daily routines, are not apart of my life and not possible. It takes people time to see that while your body may look okay from the outside it serves as your prison of pain and fatigue. 

But how would you approach a possible new partner with your life? (We are assuming that somehow you have made it past the first hurdle of actually getting out). I mean, I wouldn’t want to date me! I wouldn’t want to deal with someone who is always going to say no every time I ask if they want to go out and do something. I would get frustrated when I would want to talk and visit and they are just shutting down at the end of the day and don’t want to talk. I wouldn’t want to bend my life around someone who can’t eat out, can’t be active, would inhibit me at every turn.                       I wouldn’t want to be tied to a person who could never fully support themselves and who would drain me financially with medical bills. I would tire of all the health talk, all the time.

Run boys! You don’t want this.

YOU AREN’T ALL IN

I am not present for other people the way I want to be, a lot of the time I am exhausted dealing with me. I do try, I am an uber-communicator and reach out to others all the time and do the best I can to support others in their struggles and try and be diligent in prayer for my friends and family. But I can’t imagine having a spouse and trying to be there in the capacity that they would need. I may not be able to hold up my end in a household, or relationally. 

More than that when I am going through a hard time physically I am fairly aware that I go through not quite being myself mentally or emotionally as well. Whether it be more inflammation on the brain, or toxins or whatever, I am well aware that my ability to rationalize or consistently think clearly is affected. I also lose the creative and motivated sides of myself. So in a very real way I am not fully myself.

Back in December I went to hang out with a new friend one-on-one for the first time (just a friend) and later he said that he felt he had to drive the conversation. Firstly I was a little a nervous, but what he didn’t know was that although I was in a better cycle with my health,  I was in pain, and had some brain fog… That’s the worst because you are searching your mind with what to say, proper responses, and adding new threads of conversation, all the while using a micro machete to cut through cobwebs in your head. You may seem okay and even fully alert objectively, but they don’t know you are fighting through a few obsticles to put on a normal persona.

Friends that have known me a while can tell a definite difference between clear-headed me and me on the days things are foggy. You see if you don’t know me it looks like my personality is different. If I ever seem quiet and a little shut down its because I literally am, but it’s not my personality or choice. 

So how do you begin a new relationship like this? Well if you figure it out let me know.

IN CLOSING

So thankfully although I have days here and there of longing and loneliness, something broke in my spirit with this last round of ill health and I am no longer looking for marriage and family… It just doesn’t seem possible. Can God make it happen? Yes I know He can, and if He drops someone on my doorstep (and you know it has to happen this way because I don’t get out) that would be an unexpected joy.

So a shout out to my fellow U.I.I.S.’s, for now we will just hunker down, survive, take care of ourselves and (for me) serve God the best I can with what limited spoons I have. 

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❤️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.

Sticks & Stones May Break My Bones, But Words Can Crush My Soul

“”Don’t become your illness.” It is so painful and disheartening to hear. Trying to explain to someone what it’s like to be a soul trapped in a body that perpetually manages such a high level of pain, to have a mind that attacks itself with every thought it produces, to constantly live in anxiety and to lose the talented pieces of yourself that are the most God-given and true, is almost, ALMOST as exhausting as the Lyme. It is the walls of darkness that keep us from experiencing the full beauty of this world. Us with Lyme, we didn’t harm ourselves, make poor choices, or consume bad things. It’s not cirrhosis or type ii diabetes. We got bit by ticks while being in the wilderness. To those who suffer, God’s presence is forever within you. And to those who lead healthy, disease-free lives, you are the lucky ones. We didn’t ask for this.”~Sara

I am opening with this testimony by a fellow Lyme sufferer, because this post is all about the questions and comments that hurt…
Living life with a chronic illness is hard enough; it takes and takes and never gives back. But what is worse than the daily agonizing struggle,  the pain, the isolation, the desperation for answers and trying to get better… Are the words and reactions from others who do not/cannot understand.

Granted some hurtful words come from a place of naivity and are not ill-intentioned, but some people do choose (no excuses here please) to belittle, downplay and deny what they cannot “slap a label on” or grasp the concept of, or fit into a comfortable pre-conceived catagory. Somehow we have become a society of labels and categories and if someone is suffering from something that someone doesn’t have a “label” or fit our ideas of what “sick” looks like, we seem to think it is easier to accuse the sick person of faking sickness or having a mental problem, not getting appropriate treatment or doing something wrong; because of course “there is no such thing as long-term illness without quick-fix cures, right?” Why is this? Is it because people cannot accept that there are illnesses without straightforward blanket treatments, without instant textbook answers? People seem to need  everything to be like a math equation; A + B equals C, and people seem to need the “C”; meaning they need the treatment equation to make sense…

 If you have cancer you get chemo/radiation/surgery. 

If you have Diabetes you get insulin and change your diet.

If you have allergies you take antihistamines and manage your environment. 

Etc, etc. 

If you have Chronic Lyme you…….well that’s complicated.

Don’t we the chronic Lyme community hear it every day? 

“Why aren’t you getting better?”

“Have you tried this?”

“It’s all in your head.”

“You just need to exercise and get out and you’ll feel better.”

“You are obsessed with being sick and people are sick of hearing about it.”

Folks I/we get it. What we live through from an outsider’s perspective is confusing, confounding and perplexing at best. What is sad that approximately one out of every four Lyme sufferers I talk to has been alienated/disowned/abondoned by close family and friends. I don’t know maybe the statistics are higher. 

I just wrote the other day on what it’s like to live with someone with chronic illness (Living With Someone With Chronic Illness), and recently also about a day in the life of a chronic Lyme sufferer (Confessions Of A Functioning Lymie) which have already helped many people in understanding this life. Not that I’m the only blogger out there, but I try. 

Anyway a fellow Lymie and friend asked people with chronic illness on her Facebook page to post things that had been said to them that were hurtful and frustrating in regards to their illness; she got a huge response. It brought tears to my eyes to read through them and see all the hurt that was piled on to these poor people who are already suffering so badly. It hurts so much because we are desparate to get better, being chronically ill is NOT  fun and degrading comments is literally adding insult to injury. I asked permission to re-post the FB comments here to try and raise awareness, so here we go…

“I hate the people who are emphatic that you can get better by doing things they recommend (as if we haven’t been practically scratching our eyes out for years looking for answers and are under the care of expert doctors). I have been told I should drink lemon water every day and get massage..(by the same person) and this should get me better.”  Also (said to me by a doctor, in several lectures over several different appointments) that I just need to get out there and meet someone, that being in a relationship would energize me and help me not to feel so bad. “~me

“The most invalidating is in response to hearing of my Lyme diagnosis is simply, “So?”” ~Megan 

“It all from within…. Just visualize yourself healed and eat better. Why can’t you just do that?” ~Cody

“But You Don’t Look Sick! It’s all in your head . Don’t claim it. ” ~Charmica

“Are you sure you are not just in need of some counseling or a psychologist?” Oh and, “So when did the doctor say you could expect to be over this?” ~Amanada

“Everyone has problems.” Then compare it to sprained ankle or a bad grade on an exam, or something similar. The fact that extended family was often the source of these comments was especially hurtful.”~Sarah

“Why aren’t you better yet?” ~Sarah

“Oh yea another BIG peave of mine “I know someone who had lyme and he/she is fine” (me to myself they either caught it early, are in remission or probably really not “fine”)  I ask them what stage? They never know – and I say, “you know the difference between stages of cancer?” (Trout-eyed answer of Yes) …well you’re friend might have caught his/hers early/stage one… consider me as late stage metastasized”… ~Linda

“Why is your treatment not working?? Umm let’s see I just started two weeks before this goon asked me that.”~Melissa

“Lose weight and u will feel better”~Nikki

“My neighbor knows we have Lyme. She asked how my daughter was doing, my daughter had psychiatric Lyme, I said much better than a year and a half ago. Neighbor said it must have been a phase she was going through. Really?? Neighbor is an M.D.”~Valerie

“I was told by the pharmacist when I was picking up my huge bag of medicine “well at least you look good!”~Tammy

“Could be worse, you could have cancer. Your still not better?” is another one..ppl dont understand what the word chronic in chronic illness means .. ~John

“”I think your a hypochondriac” said by a good friend too.:/ ” Are you using drugs?” Said by a family member. Ugh thank god the full moon is preventing me from thinking of them all! I block that crap out then block the people who say these things out too. Lucky I have a pretty thick skin but still… It can hurt. They have since apologized to me but it still hurt.~Michelle

“From my occupational therapist sister when she was criticizing me when I couldn’t go to her kid’s birthday party when I was herxing my brains out, “I have cancer patients who do more than you!”~Denise

“Or ….. Has treatment worked yet then a few days later…. Has treatment worked yet? Then a few days later …has treatment worked yet??…… This one drives me insane!! Like stfu!!!!!!”~Sandy

“Aren’t you better yet? Why not try xyz you’ll feel better positivity and mind power can heal you!…. Ugh!  I have tons more! 😩😳😡 xx”~Joanne

“”It’s funny how im always reading on fb that you don’t feel well, but then I see you and you look fine…”.Uuuhhh that’s because I only leave the house when I feel well!”~Misty

“It must be nice to sleep in everyday. (!!!)”~Amy

“”You look good though, you don’t look sick”  “Well, at least you don’t have cancer, could be worse!””~Chloe

“What a waste of money – all you need is antibiotics!” Like you know!.”~Charlene

“But your not dying so your fine.. Someone close to me always says if I went to a better church I would have been cured by now.”~Alyssa

“I’ve heard many things. Like… “I would say I hope you feel better but we have given up all hope” that was said by a nurse. When I was dying in the hospital I was told “You’re young and healthy you will bounce right back”. “Maybe you need to see a psychologist because It could all be in your head”. When I was in a wheelchair and couldn’t even stand or barely talk I heard “Just go out and have fun with your friends you will be fine”. The list just goes on…. and I was told most of these things by people in the medical community.”~Jenna

“Stay off of Facebook and the Lyme groups and you will get better”🤔~Angela

“I’m cracking up, but hurting inside for all of us and the soul crushing words we hear from our family, friends, Christians, strangers, and our own Lymies and Moldies.”~Roxanne

“I know they probably mean well, but “I wish I could do more for you or help you out somehow” when they damn well know that I do need help, physically and financially, and there are a few that are very able, but won’t. Just empty words, meanwhile they are buying themselves trips to wherever the eff, while I couldn’t barely pay for my trip to bc to see my Lyme dr. Immediate family, by the way.  Another one is “don’t let yourself get lost in the label of it. You’re not your disease.” So deep…”~Carli

“This from a neuropsychiatrist after telling him i have chronic Lyme disease which has caused my depression and anxiety, after being referred to him by a neurologist. “So do you believe in aliens too?” This from a highly specialized doctor who deals with mental health issues!”~Sharon

“So you don’t work or do anything at all?.”. ” if you actually did something rather than just laying around all day you would feel better”B“you’re just depressed, just get outside get some fresh air you’ll snap out of it.”..  “You’re just being lazy”~Grant “you just need to go back to work and be around people” “i dont understand why you cant get out and do anything and live your life” “you’re not even trying” <— one of my favorites “you’re taking too much medication” “you’re not doing enough” “you need to make ______ (fill in the blank) a priority” “are you sure your medication is working? you always feel like shit” “who told you that you have lyme? it was probably a false positive, igenex is crap – less sensitive than standard testing” …that coming from a neurologist recently! “why cant your dr figure this out?”“so when are you going to get better” “there’s nothing wrong with you, you just like attention” “i know someone with lyme, they did x,y,z treatment and is fine now, you’re just being dramatic” “have you tried…….?”…….so many ignorant statements i feel like i’m forgetting some of the best!”~Betsy

“I have so many – but one of my faves was from a Dr during my first of many hospital asdmissions. When they couldn’t find the reason for my sudden onset neuro problems, the Dr asked ‘are you sure you haven’t forgotten to tell us anything? like – have you been hit by a car recently??’ That was the point when I knew that life with Lyme in our current medical system was not going to be easy lol!!” ~Laura

“What is it like to be able to stay home, not work and sleep in all day? GRRRRRRRR”~Linda

“”do you use your disease as excuse?”-no ,i like to feel like dying. lol”~Robin

Readers I had to stop because there were just too many comments and many were repetitive, but you get the idea. 
In closing I am left with not much else to say, but I wanted to share a link from one of my favorite Lyme sites on being in the life of someone with chronic Lyme

 So you know someone with Lyme?




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Living With Someone With Chronic Illness, Are You Prepared?

Living with a person with chronic illness; what to expect

So we’re friends, we get along great and have never had a conflict…all is good and we are both amiable people who should be able to room together. You are also empathetic and know I (or said chronically ill person) have major health struggles. Lets say for the sake of this post that we decide to become roommates and I (or said chronically ill person) is financially able to do so. What are you in for? You may think you know, but you usually see me at my best because that is when I see people at all, and what may seem fairly normal from the outside may not be what you imagined when we get into the day-to-day. So I will do my best to step outside my life and look from a subjective outsider’s point of view.
I was prompted to write this today because this morning I encountered a situation staying in someone else’s house where I did not meet their expectations of me; I don’t mean this in a negative way on their part at all, only that my life doesn’t flow at the pace of everyone else’s and I am hit with the sharp reality that I disappointment people. You see this morning I was not “up and at ’em” when I was expected to be. Not only is sleeping difficulty just part of my life but it’s even harder in a strange house. Add to that that sleep is like oxygen to the chronically ill and there is never enough. So if I get less than 9 hours everything feels worse: pain, inflammation, brain fog, grogginess, cognitive abilities…everything. And a lack of sleep feels like a slow sinking death. 

With that in mind I rolled out of bed at 9:30 this morning aching, feeling hungover (no not from alcohol) and DESPERATELY needing coffee just to be able to speak properly… And was instantly expected to engage. I guess that didn’t go so well because I am sure I came off as unfriendly to the houseguest who had just arrived. But that’s a fact I didn’t even consider until later, but that’s how it goes.

Anyhow, back to living with the I.I. (Invisible Illness) Sufferer. 

If you catch me at the wrong time I may seem odd or unfriendly, my schedule is not normal, I am not consistent. Thank God my personality is more consistent than it used to be but I wasn’t alway able to navigate how I came off to others or convey what I meant, or be clear in my head with my intentionality’s…( I have had some catastrophic misunderstandings in the past). 

So currently I live with chronically ill family so nothing ever has to be explained, no one disappointments anyone else with unmet expectations, things in the house gets done according to whoever has the energy and nothing is assigned or on a schedule. We undertstand and support each other. But for the healthy person things might be strenuous. Here is what to expect:  

They will disappointment you/not meet your expectations:

What would be normal are Shared chores, a house schedule, sharing a bathroom/kitchen/living space, being uncluttered… Basically contributing in equal parts in all the ways a healthy roommate would be expected to; but they may not be able to do so.
This is scary for us because it means you may become frustrated and angry when we don’t hold up “our end”. Having expectations of a shared living situation are fair and everyone should contribute equally financially and physically and show respect; this is the only way rooming together can work. But this is assuming everyone involved is healthy, and living with someone with a chronic illness is not normal and throws a monkey wrench into what could be a happy cohabitation. 

We will have a problem with you using chemicals in the house, we will tell you that you can’t use that air freshener or spray that perfume in shared space. We will overrun the refrigerator. We will not clean up right away. We will sleep until all hours of the middle of the day. We will (most likely) be financially strapped all the time due to our overwhelming health expenses. We may appear lazy. We know we’re burdensome😦

They will not respond appropriately sometimes:

So I am SO grateful that I now deal with this very little since I have been treated for Bartonella on my brain and brain stem, but I used to have a real problem with social situations and communication; with how I came across, with how I understood a situation and having proper emotional responses.
Ugh! This is really hard and frustrating especially when you don’t get out enough as it is due to your energy and symptoms. Being misunderstood and misunderstanding others makes you want to crawl out of your hole even less. Also I have to say that the chronically ill whose brains are affected need a lot of grace; I still deal with many fellow sufferers online and when I get frustrated I have to remind myself that I used to be where they are and it seriously affected my emotions and responses  too. I was whinier, angrier, and had a lot of inappropriate emotional responses to things that shouldn’t have been responded to emotionally. People that didn’t know us “before”, or don’t understand that this is what’s going on can’t differentiate between this brain garbage and our personalities (honestly sometimes we can’t either). I remember so often wondering “what’s wrong with me”? Well what was wrong with me was literally a viral infection in my brain.

So if your ill roomie is being bratty, emotional, childish, grumpy or whatever, and you think this is not true of the person you thought you knew, you may have to step back and give it a little time and space and see if they are different on a better day. But this is tricky ground and everyone is different, so tread how you see fit. I just recommend honesty in gentleness and grace.

They may be messy:

Yes that mess or clutter will get cleaned up, but maybe not when you want it to or on your schedule. Please understand we are not slobs because we want to be, we actually feel better when things are clean and orderly, but it takes effort to maintain that. You know how they say that the outside (say, a person’s home) reflects the inside? This is true. We are a MESS on the inside mentally and physically and for a lot of us it’s all we can do to keep any kind of normalcy. You may think we don’t care about clutter or are lazy, that’s not true. For example on a day where I happen to have extra energy and feel clear in my head one of the first things I do is clean house. And it feels good and I actually enjoy it! In contrast there are a lot of days where I am fatigued and I have a staring contest with those few dishes on the counter and no matter how hard I try to telepathically put them in the dishwasher it just doesn’t work. I try and mentally imagine getting up and moving and putting things away, and even in my head I can’t put forth the effort. The best way I can describe it is its like you have lead in your veins and everything is so heavy and moving your body takes three times the effort of normal.
And speaking of clutter; we are going to come with a whole lot of “baggage”, because our lives are all about health stuff; trying to get healthier, trying not to feel worse, trying to just live. So there will be a LOT, and I mean a lot of pill bottles. Plus pill organizers, zip lock baggies, tinctures, droppers, pill cutters, powders, liquids in the fridge…
And besides that we can’t eat and drink just anything, there are a lot of things we are intolerant to that further activates autoimmunity, so food is all about trying to improve health, prevent flare ups and rebuild our bodies. That means food is a bigger part of our lives than it is for most people, and not necessarily in a fun way. Actually it can be exhausting because we can’t trust things other people make (for the most part) because we don’t know if they used a non-organic veggie (toxic pesticides) or whether it might have been cooked in an oil that we react to, or has a spice in it on our allergy list… (You get the idea). 

So the cupboard, fridge and freezer are going to be stocked with a ton of stuff; there is going to be a lot of fresh produce, dairy-free milk alternatives, organic condiments, jugs of water, whole chickens, lots of leftovers (because cooking in bulk means less cooking), big bags of stuff from Costco (because buying organic in bulk is cheaper), hemp seeds, quinoa, spices, herbs, gluten-free items of all sorts… And SO much more.

Oh and lots of cooking means (drumroll) items to cook with! Also be prepared for your kitchen to be taken over by pots and pans, utensils, food storage containers, and (probably): a juicer, a super powered blender, sprouting jar, sauerkraut maker, food processor, fancy vegetable cutter, veggie noodle maker, ice cream maker, and more. But please, use our utensils and our appliances because we will probably want you to eat healthy too😉

Also if we share a bathroom aforementioned pills may be in there too, along with our bags of Epsom salt, essential oils, rubs and pain creams. 

They may have trouble keeping a schedule:

Most people’s live revolve around one god: Time. Schedules, daily duties, social calendars, work, travel… It all centers on the almighty clock and this determines life and how it’s lived. With the chronically ill time can be almost shoved aside and forgotten and the “god” that replaces it is energy and the severity of symptoms on a given day. That is what determines daily life, and for many of us it is completely unpredictable. The yo-yoing is very frustrating we know, but even more so for us. Yes I know I will feel worse if I didn’t get enough sleep or ate something I shouldn’t, but what frustrates the heck out of many of us is that sometimes there is just no rhyme or reason that we can decipher why some days we feel downright good and others we have to crawl to get to the bathroom. What happens then is that we drive ourselves mad trying to reconstruct every little thing that we can to have another good day, or we overanalyze with intricacy what could have caused that bad day. 
So we will bail on plans last minute, we will let you down, our days when we aren’t working (if we work) may begin at noon, and getting ready for something could take hours because we take a shower, then rest, we get dressed, and rest, we do our hair, then rest… Oh and if it’s really a bad day all that getting ready may wipe us out and we’ll bail on you anyway. 

Please understand we HATE this, we don’t want to miss out on life and it adds to our malaise and depression and we hate letting people down, but this is reality and has nothing to do with desire or intention but everything to do with physical limitation. 

They may be anti-social:

*please insert here a lot of what was written above about keeping a schedule, as this overlaps that part by quite a bit and for the same reasons. 
But I wanted to add here that sometimes we won’t even feel like talking or visiting with you, our beloved roomie. This again has everything to do with lack of energy and pain levels and nothing to do with you. You see for a normal person the speech center of your brain is not necessarily affected when you are overly tired, but for an I.I. (Invisible Illness) Sufferer just trying to talk and listen and process what you are hearing and respond correctly takes a lot of effort. 

Aaaand again we are going to say no to a lot of social events and/or bail last minute.

One thing though that I’ve heard across the board from every chronic illness sufferer is that we don’t want you to stop asking us to things and inviting us. Even if we say no, it lets us know we are still important and we still matter. 

They can’t eat that:

By now if you know your I.I. Sufferer friend well enough to move in with them you will also know they have a very limited diet. 
Now working that through may depend on them and how difficult it is for them personally (as far as what food you eat in front of them and what you keep in the house). As for me I have been living with dietary restrictions so long it doesn’t necessarily bother me when people eat food in front of me that I can’t have; my will power has a lot more to do with my own inner struggles and won’t necessarily be effected by what you eat in front of me.

I have found that (in a social situation like a restaurant) everyone else is a lot more self-conscious about me not eating than I am.

I will say fervently to those (and I have heard too many stories) who do not take a sick person’s dietary restrictions seriously by: belittling them, trying to talk them into breaking their diet, sneaking “bad” food into their food, teasing them, saying it’s all in their head or that they have an eating disorder.. This is disrespectful, cold hearted and controlling on your part and metaphorically it is you lifting up your skirt and flashing us with your ignorance causing indecent exposure of your personality disorder. Sorry that was harsh, and very few people are that cruel, but I have heard first-hand of ill people having this happen to them and even landing in the ER due to an autoimmune response because someone slipped something into their food because they thought the person “was faking”. This has happened to me before also, although thankfully even though I had a horrible reaction there was no ER visit. 

When you have an autoimmune disease it means your body is in high-alert attack mode all the time and there are a lot of food triggers. We want to thank you in advance for understanding and please, continue to enjoy what we can’t.  

Their priorities are different:

How we feel is the lens through which we see and do everything. What may seem urgent or important to you on a given day may be pretty low priority for us. This doesn’t demean or downplay your priorities in any way, it’s just that the old saying is true:
“When you have your health, you have everything. When you do not have your health, nothing else matters at all.”

There is nothing like feeling sick in your mind and body every day of your life to change your outlook and priorities. You may think we are obsessed with our health and how we feel, but honestly when something rules your life to that degree and its something you can’t escape (you can’t leave your body) you feel it and carry it and are affected by it no matter where you are or what you do.
My sister and I have left a concert before that we had been dying to go to for months because we just couldn’t make it through to the end due to our pain levels and fatigue. Was this great concert a major priority? Yes. But our health and discomfort robbed some of the joy and caused us to leave before the end because we just couldn’t enjoy it to the degree we would have if we felt okay.

So, sometimes beloved roomie we will have to bow out of things we would like to do, and focus on things we would actually rather not. C’est la vie.
Thank you perspective roomie for reading all this, I hope you are now armed with info and can have some insight into the work of living with the chronically ill. 

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Is Hope A Burden? And Accepting Circumstances…

I have been in a different place as of late; all I can say is that there has been an internal shift and this last round of die-off did something to me on a deep level.

As you know (I think at least) I had kind of a double whammy that began with starting a cellular detox May 20th followed by treatment by my LLDC May 23rd where he found that the three B’s were in remission, but that I had Epstein Barr, Non-STD Clamydia, Erhlychia, Lyme Coinfection virus A and C, plus Protozoa.  The first several days after treatment I was fine, felt great in fact and even had some activities with friends. But then I got hit hard and went back down the rabbit hole as I call it. I had been experiencing horrible body pain (much worse than the norm), bad enough to keep me from sleeping at night and causing several bouts of tears, both from the pain and frustration. Also any energy I had got snuffed out, went into a foggy place again, swelling worse… You know, all the usual stuff. 

Somewhere in the midst of this the hopeful light in me went out; it’s just been too many years….too much struggle. Thankfully I felt a slight lift a few days ago and checking the calendar it coincided almost exactly with six weeks post/treatment (they always say die off runs about six weeks with this therapy). I am still not feeling great but I think (hope) this accute bad spell is behind me. But I am left on the other side of this most recent storm a little different than when I went in. It’s hard to explain; I have been through the mind-numbing years when things were unbearable and I was in a state of apathy, grieving and hopelessness, simply surviving one day at a time. I have been through the period following this of awakening and letting go of grief and the regrets of lost time and loss of life and having so much hope for the future… Letting myself dream again. But now I seem to be in a place of complacent acceptance where hope itself has become a burden and not a joy. 

I guess I need to clarify that I have not lost hope in the Lord or the fact that He has good things planned for me or is doing good things, not at all. By His grace I have grown so much and continue to grow. I am blessed by a family I love dearly and we all weather this ongoing storm of chronic illness together because we are all in the same boat, it’s drawn us closer. I am blessed by some of the best friends a person could possibly have. I am blessed by my dog who is a gift from God (Shiloh’s Story). I am immensely blessed by my current job and the people I work with. But I am coming to recognize that some things I hoped would happen in my life are not happening and may never happen, and living every day thinking about what may never be is exhausting. So I am mentally closing the door on finding love, having a family, being “normal”, traveling, all the stuff that people do….  If God chooses to open that door that’s up to Him and it will be welcome, but I need to accept this little room and this life the way it is and just live my best for God one footstep at a time, one encounter at a time. If an online platform for fellow I.I. Sufferers is my calling and my little window out into the world, I have to be okay with that.

No I can’t be financially independent. Yes I have limited energy and have to manage my spoons. Yes life is a yo-yo with periods of brief normalcy followed by times of scraping by. Folks I’m just tired, and desires for the big stuff has kind of been squelched. 

Is this a good thing or a bad thing? Honestly I’m not sure, and the answer may be a little of both. I have been reminded a few times lately of Joni Earicson Tada and her story and her amazing minsistry. She had to come to acceptance of the fact that she would never use her arms or legs again (something that is unimaginable to me) and she has lived in so much grace and love. She has touched millions and that never could have happened if she grew bitter or kept striving for healing that would never come. I can’t think of a better role model than Joni. Who am I then to think I deserve better than this life of struggle I am living? Even if I am single forever and I never have a typical/normal life or the things most people take for granted, Or will never be able to eat everything I want, or do activities I want, if I forever have to pick and choose between things in life according to my energy level, if I have to deal with a certain level of constant pain, fatigue and swelling…I am still blessed and I can do a lot if I just let God do whatever He wants to do with me day by day.

So today after having taken a nap that has (again) become a common occurrence, sitting here on my bed with a bit of deep tissue pain, the usual swelling, headache and fatigue… I recognize I was also able to take a little walk in the pleasant summer rain with my fur baby love of my life, come home to a safe comfortable place to my loving family, and be able to write this post. Life is hard, but it can still be good 🙂


Beautiful slightly stormy sky this evening