Health Update

As many of you know I have had some progress in health and have been winning little battles along the way, but some things persist: autoimmune disease (mast cell overactivation disorder, etc.), and all the symptoms that go with it: chronic inflammation and pain, flare ups and food intolerances, P.O.T.S., chronic fatigue, edema, neurological issues…..
My sister Holly and I are still digging away at getting to the bottom of why some things aren’t getting better. Holly has been having some pretty scary symptoms including brain inflammation, intermittent loss of vision, horrible fatigue and other symptoms. 

We have some excellent health care practitioners who are amazing and doing all they can, and treatments and meds continue to be expensive.
Yesterday there was a breakthrough; I saw one of my doctors to follow up on a test I had run a couple weeks ago; it actually went out of the country to a university that is doing some groundbreaking testing. Not only are they finding things labs in the US are not, but they are developing specific treatments to kill what they find. Apparently what I learned is that most labs here will only test for what is on the requisition, and nothing else, even if they find something they can’t identify it isn’t reported. So because they don’t do this kind of intricate testing in the US there is a doctor here in the states working with a doctor overseas at this university (who actually used to live here in Washington!). In any case several things showed up which are serious, but it’s good news because it would’ve gone undetected otherwise. I have an elevated white cell count, which is nothing new because that has shown up before, but what they did find is that I have some deep chronic parasitic infections one which attacks the gut lining and is deeply imbedded and is not treatable with normal antiparasitic’s, one that is attacking my liver and one my kidneys. 

So if untreated I could potentially be headed towards liver and kidney disease, and kidney disease is irreversible. Since the liver and kidneys have not been functioning properly all these years it makes sense that I can’t detox properly, process things properly, etc. 

As some of you may know because I brought it up in the past, I have been struggling with my liver and kidney function for many many years.

This help explains a lot of why all the autoimmune overreaction, the fatigue, swelling and other symptoms are not getting completely better even though the Lyme seems to be under control. (although Bartonella, a lyme co-infection did show up as still active). Getting treatment for the Lyme and coinfections has made huge difference, but there was still more to deal with. 

All the mast cell overactivation disorder and other autoimmune issues cannot get better until this is dealt with. 

Good news is that it is treatable with some specific medications they have developed at this university that does the testing. Bad news is it is $2,300 for the first round of 21 day treatment, and when I am done with that they have to retest and usually they have to do a second round of treatment at the same cost. (The test is also $788). 

And that is just me! I think our entire family needs to be tested (Holly already has and will be getting treatment too). The costs are big, but God is bigger.

I am asking God to do some miraculous things and we shall see how He provides. 
We could of course also use prayer in all of this, for healing and provision.

As a quick aside I could also use prayer that I don’t at any time have a stroke of blood clot as one effect of all this autoimmune activity is that my blood is thicker than it should be and puts me at risk of clot and stroke. I am on some things to counteract this but I’m still at risk. 

If anyone is able and feels led to aid in financial assistance we would be humbly blessed:

Lyme Fund page
And as always I am more than willing to work for finances so I will share my art page as well: Farfalla de la Luna Art Page

The Chronic Illness Sufferer’s Dilemma: To Post Or Not To Post, That Is The Question

Nobody is normal. 
Everyone is unique.

That said,  long term illness changes a person; it changes your mind, your emotions, your perspective, your way of thinking… to say nothing of your body.

And the places in your mind that change can be impossible to perceive what is caused by the physical (hey come on, LITERAL viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me even with the deepest introspection lines are blurry).
So when you are in this bubble of misery and feeling desperate; many of us reach that crossroad decision of whether to reach out publicly or not. Now some do so all the time, and some do so seldomly. I want to share with you, the healthy person, the “normal” person, what goes on in our heads and where the need to reach out comes from. Because to you seeing our (sometimes frequent) posts regarding how we are feeling physically and mentally can come off as….

Desperate

Attention-getting

Overly dramatic

Whiny

Ungrateful

Emotionally unstable

Lacking faith

Hypochondriac 

Lacking strength 

Or “_____” fill in the blank 
And honestly maybe some chronic illness sufferers are. BUT, I am asking you to consider grace, and here is why. 

Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You DO stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, your life may not be perfect or exciting, but it is full. 

One day your body starts to betray you. Suddenly all the normal daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years. 

You start sleeping a LOT more, so much more you start to feel guilt over your laziness. Even after a full night sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge.

So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago.
Oh and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain. 
Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bed time and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep….Now it feels like that ALL the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle.

Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you feel dumb as you can’t seem to formulate articulate conversation.
As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse.

You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward.

Your world grows smaller.

As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy. 
At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!”

… you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…. your friends start to drop away, they check in on you less and less, they stop inviting you to things because they know you will just say “no”. 

Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time.

You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life.  
Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You feel a little “crazy” and desperate and sad and lonely. Since you don’t see people in person so much anymore you reach out to your friends online; both your real-world friends and your friends who you have now met in your chronic illness forums and such.
So I am speaking to you; “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention”, talking about what they are going through very publicly (sometimes) going into TMI territory…. know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were. 
They post because:
They want fellowship,

They want friendship, 

They want to both hear and be heard,

They need a sounding block,

They want to feel normal,

They don’t want to disappear and be forgotten

They want to have a glimpse of normalcy and online may be all they have

They don’t see people much face-to-face so “face”-book is their life.
Hear me now as I write this for my sick brothers and sisters!

Everyone needs people! When you are sick and isolated online is your people!

We are not grand-standers or attention getters (at least not most of us) we are people just like you who have had our lives changed and shaped by our illness and our circumstances. All we want is to be normal and healthy. We covet the little things that most people take for granted; even just taking a walk on a sunny day. 
One more thing I want you to know; worry about the chronically ill people who don’t post and instead stay quiet. They are experiencing everything the communicators are, they are just internalizing their pain versus reaching out.  

It is: Having an outlet, versus internalizing everything

Isolation, versus reaching out

Honesty, versus putting on a happy face

I have seen too many of the “quiet one’s” obituaries online, (self inflicted.)
Please also know the  anxiety we go through on what to post and what not to post. 

It is SO hard to judge because (especially) on a bad day our perspectives are askew… and the reactions we get from people also vary greatly.:

You get the positive feedback from the chronic illness community;

 “thank you so much for sharing, I am not alone”.

  “so glad to hear another person’s perspective”.

“Thank you for being honest and blazing a trail for others that will come behind you.”

This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of suffering. 

But, you also get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you….
In closing; why am I posting this? I will tell you it’s not for attention or sympathy. I am giving voice to the silent suffering ones. I am advocating for those whose families don’t believe them. I am opening a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member.

This seems like a good day to do this, Christmas Eve when hearts should be open, love should abound, peace and charity reign over all else 💚

For Your Consideration… What to say when you are put down for “being your illness”

So I have been experiencing a lot of activity on one of my latest blog posts and I have also been reposting some others that are relevant to the struggle.

I have been getting saturated with great comments on those so grateful that someone is voicing their experience and giving credence to their experiences to their friends and family.

That said of course I get negativity once and a while (as we all do); but what really hurts is when it comes from someone within the chronic illness community. 

I see it too often (mostly on the Facebook feeds of others) attacking because someone’s experience is different than their’s, or they think the person is too vocal, or whatever….

Why do we do this? Why do we hurt each other? Why are we so narcissistic that we seem to think how we think or feel or our experiences has to universal and be exactly what everyone else’s experiences should be that has difficulty and is sick? Apparently this is a mindset that allows for zero tolerance or understanding that diseases manifest differently in different people and affect our minds, bodies and chemistry differently. Wow, what a concept!
So I offer up to you the following comment left on one of my posts (that was written to try and raise awareness and understanding),  and my re-buttal to this comment. I also want to ask you; the chronic illness community to join the conversation and share your experiences. I will ask that there be no attacks, swearing, name calling or ugliness, rather let us use this as an opportunity and platform to further raise awareness and keep the conversation and testimonies going.

Here we go..

Negative Blog Commentor:

“I have what is considered an invisible illness (a pretty freaky one), and honestly, at the end of the day, I can choose to live a normal, productive life. Are there challenges? Sure. But we all face challenges. ALL of us. Some are physical. Some are emotional. Some are psychological, financial, relational, career-centered, social… you name it. 
I’m uncertain as to why so many sufferers from invisible or even visible illnesses choose to be victims daily. It’s a choice to keep life in perspective, to keep moving, and to realize we’re not special because we suffer. Who doesn’t suffer? Did you know that the average person in the western world has, on average, 5 things going on with their body that could be/are serious? Illness doesn’t excuse us from life, so live it fully. 
Maybe you’re not datable because you insist on BEING your illness, 24/7. Is it all you talk about? Post about? Think about? Is there nothing more of you than your illness? Who wants to date someone who finds their identity in being sick? Do you bring your illness up every time you meet someone? Talk on the phone? Go anywhere? If you know to converse about nothing else, then you’ll stay single. 
Stop being your illness. It doesn’t make you special. It makes you common. Be the best parts of YOU… because you are not your Lyme, fibromyalgia, diabetes, epilepsy, MS, lupus, or any other invisible condition. You are YOU. Offer YOU. Potential mates don’t want to hear about nothing but your illness any more than you want to hear about all their exes, money issues, terrible living arrangements, bad pizza, or abysmal grades if you’re in school. Be you… stop being a victim.”
My rebuttal: 

“(Person’s name), I had to pause, think, stop and pray before responding because my immediate (fleshly) reaction was anger; anger that you have projected your own experience onto others without understanding that even though we all suffer chronic illness, the nuances, experiences, manifestations, brain chemistries, how we are individually effected, where the diseases have most effected us, our life paradigms, backgrounds… and SO much more differ radically! I cannot say this with enough emphasis. 
So first I want to praise you for your outlook and that you are “not your disease” (none of us truly are) and that you have the ability and will to live and thrive by fighting through. Not everyone is you. 
May I offer up to you for consideration that most of us want that very same thing. Who “chooses” to be a victim? Far fewer than you obviously think.

Maybe (just for the sake of argument) a very small minority that already have psychological issues or have an abusive background or “—–” might in fact use illness to further that inner victim mentally and to feed that need to get attention.

BUT! Most of those I have come across (by a landslide majority) who are suffering from chronic illness that has re-shaped their lives and the very essence of who they are… are desperate to be normal, to simply live and not be encumbered and isolated and in pain, fatigued beyond functionality….and missing out on life. 
I also want to let you know that having been chronically ill now for decades, and having experienced all the facets and manifestations (highs, lows and everything in between) I KNOW what it is like to be so physically and mentally (by this I don’t just mean mindset, but literal bacteria that has crossed the blood brain barrier affecting my mind in ways I had ZERO control of) sick that I was incapable of just “being me” or even having access to parts of my own mind or personality. 

I do understand that if you have not experienced this kind of illness you will have no comprehension, and I am honestly glad that you haven’t.

Consider yourself lucky, blessed, fortunate… there are many who are not.
I also want to add that no, in fact for the most part in my personal life I do not go around talking about my illness all the time. It is not the first thing I mention when I meet new people, it is almost never talked about among my coworkers, even with my closest friends we focus on other things, because I wouldn’t want to hear it all the time, why would they?

Again I also want to add that like I mentioned before my health goes up and down, I have about 2/3 of the year accumulatively that I am really struggling, and it’s in those times that I tend to write more about said struggle. But, I have good months where I feel much better and… guess what? I use it to my full advantage snd be as active as I can and as social as I can and LIVE and be me. I jump at the opportunity when my brain and body allow. And I am not alone. In fact it is pretty common for chronically ill people to overdue and set themselves back when they are feeling better because this is what they do desperately want. Because they know they are “not their disease”. 
So instead of judging others harshly, accusing, condemning, bad-mouthing and making great big assumptions that EVERYONE is exactly like you and your experience with a chronic illness, (because after all according to you everyone has a clear head, full access to their faculties, and an iron will to overcome anything and can’t possibly be so sick that they can’t just get out there and live) and should just pick up their bootstraps and “not be their illness”. 

Maybe do some reading and research, especially on neurological effects of Lyme and other illnesses that can cross the blood-brain barrier and/or mess with your hormones and other functionalities that make you “you” so that you can have a small piece of empathy for those that are less fortunate than you and desperately want to thrive instead of just exist.
*also I might add that I blog not to whine or “be my illness” but because I have deep empathy for the suffering and wish to give a voice and some comfort to those that have none. ”

Some Honest Thoughts On A Sunday Afternoon… When Life Reshapes Hope

I have no answers today, no deep wisdom (I don’t think), only a seeking mind on how to perceive life as it stands and on expectations for the future.

I was thinking that our hopes and dreams are built on a foundation of what we feel is possible. We do not tend to realistically hope for things that are not in the realm of possibility; I guess if we do we call them pipe dreams. But when long term illness and passing years rob you of the possibilities that are still reachable for a “normal” person, how do you dream? What does Hope look like now?

Of course the first dream for anyone that has been sick for a long time is for health, and of course health is the gateway to everything else we want in life: relationships, activities, happiness, success, travel,  family…LIFE. 

Now chronic illness looks a little different for every individual; For myself I am immensely blessed that I have come a long way in my (5?) years of treatment since Lyme diagnosis and there has been a lot of improvement. But the struggles continue and I may continue to struggle with autoimmune and other conditions for the rest of my life. So as my “younger” years continue to diminish like a fading horizon line, I am wondering how to rebuild hopes that are now built on a different foundation of what is possible.

I had an emotional reshaping of my hopes with this last downturn in health (Relinquishing hope), and a lot that I had been holding onto for many years got torn down. I have been living in that place of rubble for several months now and I guess I am questioning whether rebuilding the hope tower is worth it. Of course it will look very different than before and be much smaller, but right now I’m not sure what to build it with. Or should I? Is that my job or God’s? Honestly I’m at a loss. I have never stopped believing that my future and hope is in God, that He has a reason and purpose in everything He allows in my life, but what His plans are (obviously) are vastly different from anything I ever envisioned.

So here I sit on a Sunday afternoon in an empty house with a silky terrier puppy for company (who is under my care for the weekend), feeling quite lonely for some reason and pondering all of the above and maybe letting myself cry just a little. I am looking at turning 38 the last day of this year, and the years don’t slow down. Life for the chronically ill is like a treadmill; running in place and never getting anywhere but expending energy all the same and there is no end for exhaustion. 

So friends, as I have said goodbye to children, to love, to independence, to fulfillment, to financial stability, to success, to travel, to normalcy, and all the perks that come with those things…. how and with what do I rebuild my hope tower? We shall see. 

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…

❤️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.

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.