What’s Really Behind an Invisible Illness

I cannot even believe I am sharing this image, as it is, obviously, super atrocious. However, one of the reasons I write is to show ALL sides of living with chronic illness. So here it is:

Yesterday, my Husband and I had to make the over 60 minute drive to handle an ongoing issue with our new furniture. Knowing that we needed to do this filled me with tremendous dread for a few reasons: a. I knew we could no longer delay it b. my Dysautonomia makes car rides absolutely miserable c. even when I am able to get somewhere, my entire day is shot thereafter. Needless to say, it was something we could no longer put off and had to attend to yesterday.

Knowing we had to make the ride, I tried to mentally prepare myself yesterday. We had a rather nice, lazy morning and then I began doing my daily chores that have to be done; like taking care of our animals. I paced myself and had the luxury of not rushing. But by 11:00, I was so nauseous and sick I had to lie down. I pushed through a last couple of things and was back in bed by 11:30. By 12:45, I decided to try getting up again and took some meds for pain and my stomach. I opted for a quick shower, trying to avoid becoming sick from it, to no avail. I ended up on the couch again. Now I had the starts of a migraine too.

Ever patient, my Husband told me to take my time and he’d let me know when he was ready. I took my migraine meds and rested until he was ready. By 3:00, with enough medicine in me to kill a large horse, we set off. The car ride inevitably made me sick and halfway through I was taking deep breaths trying not to throw up. Inhale, exhale, inhale, exhale. I made almost the entire ride without moving my head and trying, instead, just to focus on getting there and being out of the car.

We made it, thankfully and as we usually do when we make this ride, we stopped to PetSmart to visit with the shelter kitties and buy them all some yummy wet food as a treat. Off to the furniture store to deal with the business at hand and then, by 5:30, we were in the restaurant. A nice meal out and our mission was now accomplished. All I still needed to do was survive the ride home, 65 minutes.

So why am I telling you all this about a really basic, boring day? Because for me, it’s anything but. For me and for millions of us out there, that live with Chronic Illness, the simple act of running errands and going to eat leave us in the condition that that picture depicts. Running errands and going to eat are just ordinary, mundane errands that other people don’t have to think about. They can enjoy themselves, chit chat, take in the sights, eat a wonderful meal and have an enjoyable day. This simply isn’t so for the many of us that live with invisible illness.

After we ate, I inevitably felt sick and the pain from being in the car too long was intensifying an otherwise nagging, all over ache. More meds in and halfway home, I was practically unconscious and drooling without even realizing.

A cross between my Husband just being his cute, silly self and inherently knowing and respecting ALL I go through just to go for a ride, resulted in him taking these pics.

So for me, for us, my illnesses are NOT invisible. They are bright and glaring at every turn in our life. There is no longer any spontaneity in our life or going for a ride just because it’s beautiful. These days, everything we do has to be carefully planned and thought out.

We made it home last night, clearly. And as soon as we got home, I was on the couch for the night, exhausted, until going to bed early. The copious amounts of medicine used knocked me out and my body was just exhausted from the days activities.

It was a great day, while we were actually out. We attended to business, got to spoil some unfortunate kitties in need of spoiling, I got a *ridiculously awesome* new blankie and we laughed, joked and enjoyed ourselves. I wouldn’t trade these moments with Bri for anything. I just wish, though, that illness didn’t overshadow everything we do and everywhere we try to go. It’s always there, gnawing and scratching in the background. If it isn’t pain, it’s nausea, or fatigue or a migraine.

I thought alot about the people we interacted with yesterday and that’s really the reason for this post. I laughed, was friendly, smiled and was ridiculously happy and excited over my new blanket. What none of those people saw or knew were the steps and the effort that went into making that 90 minutes possible. That I was SO excited for a new blankie, because I spend 75% of my life on the couch. Or what the result of that happy hour and a half is.

Invisible illnesses are only invisible to strangers. For those of us that contend with them everyday, they are bright and glaring in the forefront of everything we do and are.

So today, by posting this horribly inglorious picture of myself, I want you all to know this: please do not judge a book by it’s cover. You have no idea what lies behind that million dollar smile or the person who looks like they’re just happily dosing off on a car ride. We are just trying our best to live and love life in small snippets. Whether you can see it or not.

Much Love, Stace

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

26 thoughts on “What’s Really Behind an Invisible Illness

  1. Stacey you are so real and I thank you so much for posting this experience. I sent you to know that I was able to identify with so much of what you experienced and experience. The Saturday before Mother’s Day my husband and I went into The City (New York) from New Jersey. We are originally from NY and have been living Jersey for about 20 yrs now. Our oldest daughter Alison is married and has been living with her husband in The City. Because she’s expecting our first grandchild we went in to visit with them. I can tell you that it’s been a long time that I haven’t taken the bus in but preferred it over the car ride which gets me extremely anxious and I end up with a migraine as well. We took the bus in early morning at 9:40 then from port authority took an Uber to Astoria. We had a wonderful afternoon then headed back to take the 5 bus which we missed by 5 mins and waited until 7 fir the next one. Since I was so happy bring back to what we once called home I asked my husband if we could walk a little. 2 blocks In was all I was able to do as I began to feel the aches and pains and migraine start. I immediately asked to go back to the port authority sat down took some Tylenol and waited patiently for the bus as I melted into the seat next to my husband wishing I could blink us back to our family room so I could be laying on my couch. I can tell you that we got home and I showered and immediately afterwards I found tell I was going to be in for it. The next day Mothers Day I was only able to shower put my pajamas back on and lay in my chair all day. I continued this way fir the next week and a half.
    It’s mind boggling and depressing to say the least.
    For me since I have heart disease I can’t take anything for my migraines anymore because it can affect my heart. The stuff they sent to give me for fibromyalgia alto affects the heart. The last pill I was given for My ventricular tachycardia has multiplied my exhaustion and has given me no appetite and just makes me feel like I’m a snail so basically if it took me 2 hrs to get me out of bed and showered now it takes 3 hrs since starting this new drug two years ago. I feel like I’m in slow motion all the time. People , family and friends who don’t read about these illnesses have no clue no clue at all as to what we go through. It’s hard for them to understand and believe. I’m so very glad that we have each other here to share our experiences with as it can be extremely lonely. I’m sorry you went through so much and continue to but I applaud you for not stopping and for continuing to push through as you encourage us all to do the same. Together we are stronger and you have made that possible. God bless you. You inspire me and give me courage to never stop fighting.
    Btw if I told you all I did to prepare fir this bus trip You’d laugh. It takes planning every little detail and even anticipating the what if’s. It’s unbelievable as others without our conditions would never even think of the things we must think of to help get us through just one outing.

    Thank you again for sharing. We are blessed to have you. 🙏🏻❤️🙏🏻

    1. Sandy, you’re just the best! You make me cry and you are just one of the reasons I write <3 Thank you for making it such a positive, important experience!!
      First of all, congratulations on becoming a Grandma and to your family. How exciting and wonderful!!
      Ugh. I'm so sorry about your day and the experiences that went with it. It's upsetting and discouraging to say the least. Especially when what we want to do is so basic. It shouldn't be such a Herculean effort; for any of us. I applaud your efforts and hope you were still able to enjoy the day. I think that's one of the hardest things is not allowing what we know will happen to diminish our experiences. I haven't really figured out how to not dread even great things. Everything is such a challenge with our health. I laughed out loud when you said you went through preparations for the day. LOL. I practically pack a baby bag to go to the grocery store. It's awful. But I can completely relate and got a good laugh out of it.
      You are so right about people not understanding and that's a big part of why I wrote this. I went for a visit one day last week and was dreading it. The visit went okay, but my Parents looked at me, almost incredulously-a look that meant "can it really be that bad-eyerolls. I was down the rest of the day and the next. It hurts so deeply when even the people 'close to you" disbelieve what we live with.
      So, it IS that bad and even if we cannot convince others to accept that, at least we can have the support of one another who understand life like this. Some of my most comforting thoughts come from knowing that people like you, like other readers, like other people (sick like us) share these same difficulties. As you said, it's so much better to not be so isolated. The isolation and loneliness is awful for all of us. So I'm so happy to know that you liked the post and connected to it. We are not alone when we're "together".
      I'm always so happy to hear from you!! <3

    1. Thank you so much, Kim. I even surprised myself posting those pics, but I thought it an important message to get across; all we do just to have one normal hour. I’m glad you liked the post. Thanks for reading it and commenting. I hope life on your end is improving with the family issues <3

  2. Oh Stacey honey, I am right there with you! You described me as well… others cannot fathom what we go through. It is to the point that I cannot travel the hour and 15 minutes to Duke for my doctor appointments. When I do get out and enjoy myself for a bit, I swear it feels as though I am being punished for having a short period of good!

    Finally, I convinced my doctor to give me a prescription for Zofran for nausea for the times I must go somewhere. I ration them carefully as she really didn’t want to give them to me. The med gives me good relief from the nausea.

    Your description of your day out and the price you pay for it is dead on! Hope you are doing better today.

    1. Isn’t it insane when we’re too sick to get to the Doctor? I had to cancel an appointment about two weeks ago, I had a migraine and was dying. The receptionist was like, I’m confused-if you’re this sick, shouldn’t you get here? I said, well, I could try, but I’ll likely die……I can’t tell you how many providers have fired me for this same reason. So I can totally relate.
      I’m glad you liked the post, but I’m sorry it described you. Ugh. And you’re so right, it almost does feel like punishment. Which is the worst. I dread having things to do, even wonderful things, because they all come with a huge price tag. That cycle can really diminish our lives.
      It makes me angry that you had to fight for the Zofran. That isn’t fair, I’m sorry. Ultimately, I’m glad you got it and especially that it helps! I can’t say I get any consistent help from it, myself, but it’s certainly better than nothing. My provider just said the other day that it’s the best medicine, with the least side effects, to combat the horrific nausea. So I’ll stick with that. I have three meds just to try to go out and that’s if nothing else is stewing, like pain or a migraine!!
      I’m grateful to have a slow week and plan to enjoy the down time. I have ten days to prepare for my next appointment! LOL
      I hope you’re well(ish) <3

  3. Thank you for sharing Stacey. How sweet that he takes pictures of you this way. Life with a chronic illness is messy, not picture perfect, so it’s wonderful that you are soaking in the moments as they come. <3

    1. Thank you so much, Sierra. Great point-you’re right. A chronic life is super messy and unbearable-but also really beautiful and memorable. I’m glad my post came across as I intended. I could not ask for a better man in the world to share this hot mess with! Besides, he really loves giving me grief and teasing me 🙂 Thanks so much!!

  4. Great to hear from you. Thank you I’m so looking forward to meeting our grand-baby. Yes I did enjoy my daughters that day and the day was so sunny and beautiful. Sorry I didn’t mention that in the post ; Of course we tend to only think of what struggles we experienced before and after; how terrible. But it’s truly helpful to mention all of this as we give each other strength and hope. Thank you so much for all that you do. 🙏🏻❤️

    1. That is SO great!!! What a Blessing that baby will be!! I could tell how much you enjoyed the day-not to worry. Besides, going through all that has to be for a special reason-like your girls!!
      It’s really tough to somehow block out the challenges that go with things that should be simple. I’m still working on that. I think the biggest thing is we still do it. Maybe that needs to be enough of an accolade for us. We always beat ourselves up, when instead we should give ourself credit for doing things we know will hurt us. That shows our true strength of character. And sunny days are the BEST!!!
      I’m always happy to hear from you!! ❤️❤️️

  5. You really have hit the nail on the head with so many points. I take my hat off to you for showing what these ‘mundane’ and ordinary things are like for us with chronic illness, you’ve done it so well. It’s hard for me now to imagine what I used to be like, when I was one of those people for whom day to day living came easy and I didn’t have to think about anything I do now. In a similar way, those people can’t imagine what it’s like for us.

    I also share your excitement for a new blankie – what’s it like? I’m so tempted to go blankie shopping now, but I’ve already had my excitement purchase for the month – new pyjama trousers! I wear them around the house because they’re light and more comfortable for the various positions I have to sit and lie in because of chronic hip & back pain, and they fit just below my stoma quite well. Again, all things others probably don’t have to think of. You’re absolutely right. And with going out, others see a smile and someone ‘normal’ – “What none of those people saw or knew were the steps and the effort that went into making that 90 minutes possible”. Excellent post, Stace!  ♥
    Caz xx

    1. Thank you so much, Caz!! You’re so right. When we’re healthy, no thought goes into running an errand or taking a shower-it’s just part of the day. Likewise, it’s impossible for people without our challenges to comprehend how it can possibly be such a challenge to do such mundane things. So I always try to remember that when people disregard my Illness.
      I’m going to send you a picture of my new blankie!!!!! EEEEEK! I LOVE IT! I saw it two months ago and went nuts over it, but it was $70-yeah right. So when we went back, they had all been put in clearance. It was the very last one and marked to $20!!! It is SO soft, Caz!!!!
      You got new pj pants? Oh YAY!!!! I know-clothing is a challenge for me too 🙄But it makes me feel worse to stay in pajamas-maybe if I got cute ones like you, I’d be cool with it! Do you love them??
      It’s crazy, isn’t it-to no longer remember our old selves? I’ve let go, but it’s sad.
      Thanks for commenting!!! ❤️️

      1. Yeah, staying in PJs all day doesn’t help mentally. I change out of my ‘bed pyjamas’, but I’m getting into ‘daytime pyjamas’ that can pass as lounge wear for around the house because I have problems finding comfortable enough trousers. Leggings are good, but not for too many hours.
        Ooooo down to $20 is a bargain! I love it when something you’ve seen and really want gets reduced, I’m excited for you – would love to see pic of new blankie! I’ve got to go into town today to the doctor’s for another blood test so I’m going to pop into the shop I bought my last blankie from on the way, just a little ‘window shopping’… 😂

      2. So long as you change, then they really aren’t pj’s, right? LOL. Yeah, it’s totally a personal decision (obviously), but I’ve always been such a clothes, shoes and bag junkie that I feel like I’d lose another piece of myself if I didn’t get dressed. So I LOVE “lounge wear”!!! That’s a great idea. Like you, I’ve had to change my entire wardrobe. I used to LOVE stilettos and heels and must have finally given away 50 pairs of my best shoes to friends. Although I have found Converse sneakers in multiple colors sort of fills that shoe urge. It’s all about what’s comfortable and makes you feel good. Whatever that may be. I used to wear alot of ripped knee jeans so that it wouldn’t put pressure on my knees. It’s always something to consider, isn’t it Caz? Good grief.
        I’m going to send you a pic of my Blankie on Instagram or Twitter, I can’t remember which one I chat with you on more. It is SO so so soft and part wool! I just couldn’t spend the $70, so getting it for $20 was crazy!! That is the best, I totally agree.
        I hope your appointment goes okay and you’re feeling human (I need to come up with a word for us to describe how we feel……we hardly ever feel good, but saying we feel atrocious all the time is depressing….hmmm)
        YAY to window shopping!!! I hope you have fun and find something awesome!!
        <3 Stace

  6. I know that it’s unbelievably naive of me to be so blown away by all of these posts and comments. Of course I knew I was not the only one who lives this way. But to actually read the details is both shocking and an enormous comfort, if that makes any sense. Your incredible post, Stace, and every response is a form of my story. How glorious for you all to have found one another!

    1. Thank you so very much, Jayne…..what an amazing compliment. I’m so glad you have found and joined us. Amazing, isn’t it? We sit suffering silently and in isolation, when there are so many of us struggling in the same way. So I completely understand what you mean when you say it’s both shocking and comforting. For me, it helped dispel alot of the guilt and self doubt which has been a huge relief. The bonus is ALL of these warm, wonderful people that you begin to forge a bond with. That is when it becomes truly magical. (to me). I’m so so grateful that my writing and all of the other talented writers chipping in resonate so well with you. You’re home. <3

  7. Home! Hallellujah!

    Daytime PJs are an absolute Must! In addition, of course, to Bed PJs, which can differ from Sleep PJs. I have a complete wardrobe of Lounge-wear, Slouch-wear, seasonal dresses (that you could totally sleep in and require no underwear), and the piece de resistance, the flowing Caftan, for the pre-evening period or Dressy-Sick for the unexpected visitor.

    1. Oh my goodness, laughing. Wait until Caz from Invisiblyme sees this!! Grins. She and I were just talking about this!! I’ve traded in my business suits and high heels for soft comfy stretch jeans, layering tops, yoga pants and Chuck Taylors. We’re bringing sexy back to sweats 😉 LOL

      1. You know it, Sister! LOL I saw the convo between you and Caz and had to put my two cents in. I don’t see why we can’t be Stylish AND Sick. Makes me feel better!

      2. Absolutely! I totally agree!! I only feel worse if I don’t shower and dress. No matter how bad I feel. Just now I’m a Chuck Taylor junkie instead of a stiletto one!! 😉 Keep it sexy, Jayne!!

  8. Stacey I just stumbled across your blog, I too suffer from the fibro. Headaches, migraines, dizziness, horrible mood swings, depression…the list goes on. The worst is fluorescent lighting, well any bright lights…the sun etc triggers a migraine…loud noises.
    I have an 11 year old, we’re on summer break right now. He is extremely kind, sweet, always asking how I’m doing, if he can get me something 😢 not running around screaming and playing like a kid should be. But then the neighborhood kids come ring the doorbell which trigger the dogs to bark and it sets a bomb off in my skull. 👎🏻 So yes my invisible illness affects not just me, but my 11 year old, my dogs that I yell at for barking to loud (lol) my husband who works overtime because I have been on fmla for almost 12 weeks now because of the dibilitating migraines I get more than once a week.
    This disease is no joke. My doctor has me on cymbalta, propranolol, topamax, maxalt, singulair and lisinipril I think that’s it. Oh and zofran prn 😳 I feel like a walking pharmacy.
    Oh and btw Costco’s loungewear is AMAZINGLY soft 😘

    1. I’m so glad you found me!!! Thank you so much for reading and commenting!!! I totally agree; no part of life is untouched. It’s discouraging at best. I often liken “getting” Fibro to being struck by lightning: it fries everything.
      I’m sorry. I get it how you feel about parenting with this illness. It eliminates the parent you want to be and all you want to do. Our 3 kids are grown and gone now, but I pretty much slept through 18 months of their lives when I first got sick…..that deeply saddens me, still-but as you said about your Son, it makes them extraordinary human beings.
      I suffer from the noise sensitivity too-it’s such a pain. Add a smell sensitivity to it and it becomes a HUGE pain in the neck.
      I had to leave my career behind me, too. I’m sorry you’re on FMLA. Losing our professional life is disheartening. It took me twenty years to build my resume and now, it just doesn’t matter.
      As for the drugs, oh my goodness!! I feel your pain. At my worst, I was on 21 prescriptions a day!!! If the Fibro won’t kill us, the constant assault on our kidneys (from all the meds) will. But once again, that’s a lose lose. I’ve detoxed off most meds and found six months later, I’m up to ten a day again. ARGH!!!! But we have to do what we can to live this way-drugs included.
      As for Costco, good to know!!! I have several readers who do day and night pj’s-which is great!!!
      I’m really happy to meet you and I’m glad you found the blog. I hope you’ll follow me and comment again!! ❤️Stace

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