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?




Confessions Of A “Functioning Lymie”

I look fine. I may seem fine. I probably sound fine. There are some new photos on Facebook from a couple weeks ago of me out with friends, smiling and having fun, having a few days of normalcy that are momentous and rare to me, but would probably not be a big deal for you and just a normal part of life. They were taken during one of those glorious and all too rare periods when I had several consecutive days of energy and feeling pretty good. (Today is not one of those days.) 

(*disclaimer; I have to attest to the fact that I am still on an upward track with my overall health and what I am experiencing right now as far as this current setback is die off from recent treatment on May 23rd….at least I believe so). 

But what people don’t see are the days inbetween, the days that I spend in a hazy purgatory of fatigue, fuzz, pain, swelling, isolation and my body’s betrayal against life itself. 

I have to work tomorrow and I know that somehow I will pull together like I always do and put everything I have into doing my best at work, doing everything I can to just seem normal and do my job to the best of my ability, and thankfully I have been blessed over the years to stagger along in this manner; being a functioning Lymie.

 I also have a gathering to go to after work tomorow and this is causing me distress. Why? Not because I don’t want to go, but the complete opposite! I want to badly and it is vitally important to me. But for me I don’t usually do anything on a work day afterward because I just spent the day giving 100% to my job and I will be drained, tired and numb. Instead of having fun I am worried I will just be in a haze of fatigue and rather than enjoying myself I will be a half-human whose mind is only about 30% present and therefore will get about 30% enjoyment being with my dear friend. These are the challenges faced by the upright and mobile Lymie. Spoons anyone? (Spoon Theory)

That said, when others can’t see the sickness (I haven’t lost hair, I don’t have an IV port or a wheelchair, I’m not gaunt or jaundiced) how can I convey what it’s like to be a functioning Lymie? (Please note I am also using the term “Lymie”right now in a generalist sense because I believe I am clear of the Borrelia itself at this point but I just got treated for still-present coinfections: Erhlychia, Clamydia (non-STD form), Epstein-Barr, Lyme Virus Coinfection A, Lyme Virus Coinfection C and Protozoa. But as we all know chronic Lyme is never just Borrelia). 
I know that the yoyoing makes no sense to outside observers, those who don’t understand chronic Lyme; how can you be having fun at a festival one weekend and then in bed unable to socialize the next? Trust me it’s complicated, and frustrating isn’t a strong enough word for those of us that live through it. It is like being baited with tastes of life and constantly having it snatched away again. 

So what is life like when I’m not doing so well, and you don’t see me, and there are no photos taken? :

I wake up at 10am, I  don’t feel like moving. I feel groggy and heavy and “hungover”. I had a hard time falling alseep last night, like most nights. It’s a catch 22 because the stuff I take to help me sleep can also leave me feeling tired the next morning. Despite getting 9 hours of sleep I don’t feel rested at all….I may need to take a nap today. My brain feels like it is still in that state of shutting down, you know like how it feels when you are in the process of trying to fall asleep? It is doing the opposite of what it should be doing, being that I am trying to wake up. I do haul myself out of bed and I try and have some caffeine to counteract my wayward brain and body. I also take my morning pills. Since they are supposed to be taken away from food I wonder as I do every morning whether the creamy fluids are a problem. As usual the matcha green tea hemp latte isn’t doing it as far as waking me up, and although I am not supposed to have coffee, I reach for it anyway hoping that it will be my nectar of life. Sigh, I know this will continue the vicious cycle of inflammation and irritating my iGg reaction, but I so desperately want to feel awake. Choices choices…

I then decide to take a bath with Epsom salt and baking soda to help with the pain and stiffness, and to help me detox to (hopefully) help with this hungover feeling. After my tea and coffee and morning pills I feel too nauseous to really eat. I will probably have a bite of something here and there but on most days like this breakfast and lunch sort of meld together and meals get messed up. I also have my two doses of meds, morning and night that have to be taken two hours away from food and other pills….I am already off schedule and my day just started. I pretty much know that my dose of cholestyramine will get skipped yet again (like it does most days) because it also has to be taken 4 hours away from food or other pills. Then there are the pills to be taken with food… Might not get those in today either. This is impossible. 

I spend maybe an hour in the bath catching up with Facebook  and mail, listening to my current audio book, reading my Bible app and playing Candy Crush and Words With Friends. I eventually drain the water and spend at least another 30 minutes sitting in an empty tub because after a bath or shower I usually feel weaker, more lightheaded and struggle a little with feeling breathless and have a harder heartbeat. (This phenomenon: Why Do I Feel Worse After A Shower?). 

I finally get out and get dressed, my equilibrium is off and I’m a little tippy. This is not entirely normal for me and I attribute it to die off/herx (What is a Herx?)

I look down at my body which I usually try and avoid at all costs; it is swollen and the edema is especially bad, and my legs are jiggling like a water bed (you think this is an exaggeration, it is not). The water retention makes my legs much bigger than they would be (come to think of it I haven’t seen what my body would look like without fluid in the last 7 years or so), It has also been this long since I have worn jeans or slacks because of aforementioned fluid. Did I mention it also hurts? Imagine the worst sunburn you have ever experienced, now picture the deep muscle ache of a hard workout after having not worked out for months… Got it? Okay. Now combine the two together and imagine them not on your skin or in your muscles but in all the deep tissues in your legs. Now imagine that pain is constant and you’ve had it for so many years you can’t remember a day without that pain. The only variance is that on good days it’s a low-grade 2, and on bad days it can be an Advil-inducing 8. This is a further incentive to keep a strict diet because increased pain and swelling can be almost instantaneous with ingestion of “bad” foods. (although I fail so often with a bite here, a nibble there…and remember the problem of coffee!) Thankfully for the most part it has been improving and today the fluid is bad , but the pain is maybe a 4, even though the lower half of my body  (that I always hide and cover up) looks like Rosemary from Shallow Hal. I am just blessed not to have cankles today. 

I see my face in the mirror for the first time today and it is of course all puffed up, most notably under my eyes. This is now of course also my normal and I wonder what I would look like “unpuffed”, I do get glimpses from time to time.

It’s now into the afternoon, I  haven’t eaten much, I feel fuzzy in my head and tired despite my green tea and coffee. I really don’t know what to do with myself today because I’m too tired, so I sit on my bed with my phone. I would love to go on a walk or bike ride, but I feel like I can’t even force myself to get up and go do anything. I have my standard low grade headache; this is something I actually don’t really complain about or even acknowledge because it is so normal I don’t know what it feels like not to have a headache. 

Many of you wonder why I don’t paint or do something artistic on my days off like this, it’s hard to explain. There is a definite disconnect in this hazy purgatory where you are aware that there is a part of you that can do those things and enjoys doing those things, but you can’t access that piece of yourself, even if you wanted to. Believe me I’ve tried! I’ve sat down and tried to paint on days like this and it’s like trying to draw water from an empty well…it just doesn’t happen.

So here I sit, another day of nothing. Another day of waste. A day where the tears do come. Another day sacrificed to the hungry Lyme gods that eat our lives and our souls…one apathetic day at a time.                                                                   

I’ve given so many years of my life to days like this they can’t be counted. I’ve given my twenties, and now most of my thirties. Only Lymies will understand this, but this disease EATS YOU! It eats your body, your mind, what makes you you. It also eats your time on this earth.. Like water eroding the shoreline.

Today I need to pray more. Today I need to focus on God’s truths; because on days like today that are empty nothing’s sucked into the void, I have nothing else. 

Looking “fine” a couple weeks ago

The Burden of responsibility, knowing your limits and Jehovah Jireh

The burden of responsibility, knowing your limits, and Jehovah Jireh.
I am reflecting today, the day after Thanksgiving, about the interesting place I am in right now; I know from talking to others that my situation is not unique…. I have physical limitations but am not incapacitated. I have days where it is hard to get the energy to function, but I also have days where I can feel (almost) normal. The crux is is the unpredictability, but also in knowing that for most active days you will have a pay day (or days) that you need to make up for it. 
Over the years God has helped me through accepting being able to take one day at a time and extend grace to myself and not feel guilt over laziness. Because I do, I often feel that I am lazy. The only times I realize this isn’t truly who I am are on the days when I have more than normal energy and I do stuff like clean the whole house….joyfully! 

This past week has been very interesting with losing my job, but also one of peace in that I am having to let go of the burden of my own provision and being forced to rely wholly on Jehovah Jireh, the Lord my Provider. It is of course a choice; I could choose to panic and worry. But God has somehow extended to me faith that has been building over the years, being strengthened with trials. Not that I am so strong and faithful, I’m not, surrendering is where the peace is found.

So I am choosing to spend my extra time just taking care of my health and enriching my spirit, seeking my next steps and seeing what Papa does…

Lyme Fund

A Very Happy Meh Day!

A very happy Meh Day!a good friend and fellow Lymie just asked how I would rate my day today. In the world of chronic illness this is a common practice to rate your sub-perfect day with 10 being the unattainable healthy and whole. This means for a Lymie achieving say an “8” is the equivalent to being Maria singing on the mountain top, because in contrast getting an 8 or even a 7 can feel pretty amazing when you dwell in the land south of 6 most of the time.

i told her maybe 4, and maybe in a few hours 5 could be possible. Pain today is not too bad but still there. Swelling/water retention is insane today, and I must make a special mental note to avoid any members of the Makah tribe. 

I slept in until 11:45 today which is a bit unusual but much needed. Pain that has you crying out to Jesus for hours completely wipes you out, and that is how I began my day yesterday. I had my very uncomfortable ultrasound at Evergreen last night so I am hoping for some answers to at least this little piece of the health puzzle.

i am so blessed by my doctor who is walking me through everything comprehensively and saw me right away yesterday when I was in crisis. The big bonus was to get a hug and some prayer. 

So today I choose to believe I WILL work my way off the 4 spot and maybe even play some hopscotch over to 6. Don’t stop believin’ 

Need a little help from my friends
  

Good Analogy For Feeling Trapped In Bed?

Good Analogy For Feeling Trapped In Bed?

Seems metaphoric, but it is way too pretty. This scene needs a night stand covered in pill bottles and water glasses/a phone, tv remote, laptop and everything within arms reach….
What else? Heating pad? Ice pack? The next day’s breakfast pre-packed in a paper bag? (yes friend I read your post)…..

Another Day, Still Tired

Image                               Quick check in for the beginning of this week.

Well here it is another night and I am in bed by 9pm. Not sleeping yet but I usually spend several hours every night quietly in my room in front of the tv and laptop. Whether or not I have had a busy day I seem to end up tired at the end of the day, so here I am.

As far as energy I seem to be at my best late morning to early evening, before and after that I’m pretty tired. I am curious, a question for you Lymies out there: what are your energy peaks and flows? What helps? What makes it worse?

I know keeping my body super clean food-wise helps but it’s not the only answer. I live in a delicate balance with my persnickety little liver and those genetic detox inhibitors as well beyond just the Lyme. Kind of stinks that, say, something like a little touch of MSG can put me down for weeks 😛

So I will try and press on and get out of this slump, drink my homemade juice and eat my leafy greens

Discouragement in the Midst of Healing

So it is days like today that remind me with a hard slap that I am still sick. Even though my horrible energy slump is getting better and I am doing some more things my body is still in a constant state of anger and intense inflammation.
I whine a lot on this blog about my water retention, but no joke my legs and butt look like fat suit Gwyneth Paltrow in Shallow Hal. I am very serious about this, it may be a downsized version but same effect. I carry around enough water that if I change directions too fast my thighs may end up at the other end of the compass than I am facing….
Okay, I know that was a lot of whining. So even though I am super strict with my diet I am thinking I need to get downright aggressive, meaning not even having those few times a month when I have a bite of this, a bite of that, because my body is just angry, can’t detox properly, can’t methylate, has poor circulation, and obviously has a great affinity for H2O.
I am by default with all my restrictions paleo+ , meaning I take it way beyond the basic paleo diet with restrictions, but I am considering looking into the GAPS diet and seeing what that is all about and really focus on gut healing.
Ok, that is all the energy I have for tonight. Tomorrow I resume the Lyme/Candida/Leaky Gut/Mold Biotoxicity/Methylation Defect…etc fight.

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Can’t Get Off The Couch, Could It Be…..Candida?

So I have posted about my setback with fatigue and other symptoms; It kind of hit like a brick wall about 2 months ago, and started easing up just a little as the weeks went on but something was horribly wrong…
shadow of me

So I have had several different doctor appointments between then and now, and some fun tests, and along with all the methylation issues and detox pathways, it looks like the main culprit is my old friend Candida.

Yeast and Lyme

My LLMD said that up to 90% of his Lyme patients that are at this stage in the game and have a setback like I described are dealing with candida resurgence. So I am now 8 days back on Diflucan(Fluconozole), and I am feeling better! Apparently candida can also cause your cytokines to go crazy, and we all know the trouble that causes!
So I am guarding my energy carefully and hope that there are better times ahead.

So How Was Your Weekend?…the difficult questions for an invisible illness sufferer

So if you are blessed enough (like I am) to be at the stage of illness/treatment where you can hold down a job, I am sure you have heard this question on a regular basis…”How was your weekend?”
It’s a tough one to answer especially to coworkers who see you “functioning” somewhat normally, but don’t quite grasp that in order to do this at work it means you don’t have weekends.
Evenings and weekends are about recouping, resting, vegging. At least most of the time. That makes it very hard to explain to people that you really didn’t do anything, and this weekend was just like the weekend before, and the weekend before that, not much happened. It’s hard because, well, “you look fine” right? 😉

So I am just, just, poking my head back out of a pretty significant slump that has lasted for the last two months. Something I have learned from when I last had a period of time when I felt better, is not to use up all your energy. You see a couple months before my slump (I’m owning it!), I had a period of about two months where I felt better than I had in years, I did some stuff, I saw some people, I helped some people, and it was all good. Now I don’t think overtaxing myself was what caused my crash, but I don’t think it helped any either. So we live we learn right?

So this time as I am feeling a little more human again I am thinking of letting my body use most of my extra energy (I call it extra, normal people call it normal). Now I do want to see some friends again, and be able to do a few things, but I am going to be very careful.
I have been slowly coming out of my bad fatigue over the last two weeks, but last week was REALLY tough on my body with some nasty bladder/kidney symptoms and pain. I had gone to the doctor and I’m clear of any UTI or stones, the thought is that I was having a major detox. Thankfully those symptoms are ebbing away, and I am looking forward to (hopefully, fingers crossed, knock on wood, salt over shoulder…) some better days ahead.
So tomorrow I will face the inevitable question “How was your weekend?”
Answer: I actually got out to see a movie with a friend! Woot woot!

How do you feel when others ask you about your week/weekend? Does it depress you? Do the flood gates open? Or is it just no big deal?

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