This is a difficult post to write today.
Living with a chronic illness is not easy.
This post isn’t about the Pain Olympics. I’m not here to say that one chronic illness is worse than another. It’s just like our infertility diagnoses; there isn’t truly one that’s “worse” than another because it’s such a relative term with the same result.
In the case of chronic illness, different diseases and syndromes and conditions present themselves on a wide spectrum of often debilitating symptoms and that fall to the same end:
We feel like shit sometimes.
I have struggled with writing this post because I know a lot of you look up to me for being this strong, empowered woman. There are weeks and days where I absolutely feel like that woman.
And there are days, like today, where I feel meek and small and not strong at all, because the days that turn into years of living with chronic illness just pull the rug out from under your feet.
Infertility affects me every day. But it’s there more in this intangible, emotional sense. I’m not sticking myself with needles. I’m not in the middle of an IVF cycle. It looms large and ever-present, but doesn’t really make going through my days physically difficult.
My thyroid is another story.
Last night I spent three hours in the ER because my body would not stop itching. Not “oh, I have bad winter dry skin” itching. Think of the worst sunburn you’ve ever had, the peeling and itching that follows and then layer it with poison ivy and cover that with mosquito bites. Now imagine that it just won’t stop, no matter what you do.
I’d had systemic body itching for close to 48 hours by the time I went to the hospital. My feet would itch so bad I could barely walk. As soon as I reach to scratch them my scalp would start itching. Then my arms. The insides of my legs. My face, my neck, my finger tips, my ears… and it just wouldn’t stop.
I collapsed on the couch, sobbing. My husband held me, helped me undress and get into bed as I writhed, shivered, and squirmed, my chewed-to-the-quick fingernails raking across my body, leaving little red trails wherever they went, small raised welts rising in their wake.
Sobbing, in the darkness as I whispered all these awful things to my husband about how I hated constantly having to deal with something wrong with my body. Confessing that I was terrified the itching was indicative of something truly and horribly – systemically – wrong with me. Confessed to him I was terrified of being sent for a psych eval if I went to the hospital because I literally felt like I was losing my mind.
Pleading with him as he held me:
“What did I do to deserve this?”
I was lucky that it was a quiet Monday night, and was seen almost immediately at the ER. I explained to the nurses and doctors that no, I hadn’t changed my routine. That no, I hadn’t switched detergents or eaten anything different. That no, I’m on the same medications with no changes other than adding some vitamins. That no, I haven’t been bitten by anything or come into any contact with any known allergens. And that yes, I’ve tried Zytec and Benedryl and hot showers and warm oatmeal baths and sleeping naked and sleeping covered and changing clothes and trying deep breathing and that no – none of it helped.
I did explain that yes, my TSH was high, my free T-4 low and that I was likely having a “thyroid storm” where my anti-thyroid antibodies were eating away at my thyroid, causing my TSH to skyrocket to be followed with most likely plummeting TSH values in the coming days and weeks. To swing wildly from hypo- to hyperthyroid in a matter of weeks and then back to hypo- again.
The ER doc suspects it is my thyroid, since I’ve had these itching attacks for the last five months. None this bad or this long, but it makes sense when I go back and look at when they’ve occurred in the past. They gave me some steriods and a prescription-grade anti-histamine and sent me home. They began working immediately.
From 3am to 12 noon today, I barely moved in bed. My entire body ached; I felt like I had been hit by a truck. Because I had been in such an emotional state, my body tensing, me scratching so hard, my muscles were simply exhausted from overuse. The anti-histamine knocked me out hard, so I was groggy and disoriented when I awoke.
I had so much to do today, but here I am, still in bed, still feeling like crap, in a mix of feeling sorry for myself and feeling so utterly and truly tired of dealing with this all.
It starts to wear on you after a while.
Back in the summer of 2009, I wrote about how I had a lot going on, how I was still coping, how in July of that year I decided to start seeing an infertility therapist. What I never wrote about was the one day when Larry came home from work and I was nothing short of vegetative. I had taken the day off because I felt so awful. Nothing specific, but just awful.
I was beyond depressed. I was so tired – so tired – and he suggested I get in the shower. It was my sobs that sent him running into the bathroom. He turned off the shower and held me, naked and soaked, as I sobbed and sobbed. Held me still when I collapsed on the floor and told him that I didn’t even feel like myself anymore.
That the brain fog made me feel stupid. That the fatigue made me feel like everyone must think I’m lazy. That my lack of libido and the inability to lose weight made me feel unattractive.
“I don’t know who this person is anymore,” I sobbed. “It’s turning me into someone I don’t even recognize.”
It was no surprise when my blood work came back that week that I learned my TSH was the highest its ever been. That my anti-thyroid antibodies were literally off the charts. That it was my thyroid that had robbed of my sense of self on that very awful day.
I got better. I changed dosages. I tried to eat better, be more vigilant about supplements. And it did get better, for a little while. When the season changed (and I’m prone to Seasonal Affective Disorder) we played with my dosage again. And for the most part, I have managed for the last three years.
But there was something about last night, in the context of the commitment I made to myself and my husband to get healthy – I mean really healthy in anticipation of starting our donor cycle – I just felt like I had been knocked so many steps backward.
I am eating healthier. I am going to the gym. I’ve even lost a few pounds. I’m taking vitamins: calcium, fish oil, vitamin D, folic acid – to get myself in the best shape I can be.
But then they find a fibroid. And then this itching… this incessant, maddening itching and knowing that no, my thyroid is still not under control…
It’s times like these when I just have to wonder, “What am I still not doing right?”
It’s times like these that rob me of my strength, even when I know I am a strong woman.
I know it will get better. I know I’ll work through this with my new doctor. I know I am still a strong women who can persevere but right now – right now as I lay here, my muscles still aching, thin red scratches all over my skin – right now I’m just so tired.
So tired of constantly trying to be one step ahead of my chronic illness only to find I’m a block behind. So tired of feeling like a disappointment and a burden to my husband (who assures me over and over again I am not) because let me tell you: he is a saint to deal with me when I’m like this. I can’t imagine how it must feel to watch your wife in agony and know there’s not a damn thing you can do to ease her pain.
And that’s it.
Chronic illness, no matter what you have, is just exhausting. It wears you down and eats away at your authentic self. It robs you of being the awesome person you could be were it not for your chronic illness.
And the guilt… oh the guilt. For missing those events in your life that had it not been for your chronic illness, you’d have been there: parties, dinners, work, travel, etc. For feeling like you think (however irrational it may be) people think you’re just lazy or using your disease as a crutch. For knowing that yes, your co-workers absolutely used to talk behind your back about all those days you missed from work as sick-time.
It sucks. A lot.
That said, I know I will come out of this. I know I’ll find a treatment protocol that works for me, at least in the short term. I know I’m still just as strong as ever.
But in this moment, I feel like I don’t know that.
I’m not looking for pity. I’m not trying to make excuses.
I just want people to understand what living with a chronic illness is like.
And I just want to get better already.
So sorry to hear you are going through this, it sounds appalling. I know it feels incredibly unfair that you are doing everything right to get your body healthy and there is still a major problem. A different way to look at it though is, thank goodness you are eating healthy/going to the gym etc, because your episode might have been much worse if you hadn’t been putting in that effort and getting your body into the best possible shape.
Shout out your fear, and anger and worry and then you will be free to move forward, working with your doctors to move towards healthy.
With all due respect Sky, but do you have an autoimmune disorder or chronic illness? Because I have to take exception with a couple of things you said. First, it doesn’t “feel incredibly unfair”, it IS incredibly unfair. Second, she is getting into shape and choosing a healthier lifestyle simply because she wants to. It will not make her disease better or the disease process easier. It has no bearing on the situation whatsoever. I have been told by 2 different doctors in 2 different specialties that losing more than a few pounds can actually cause more damage in the case of autoimmune disorders. These flares are horrible and they will come no matter what we do.
I’m sorry if my words have upset Keiko or Jenn. It was not my intention.
How truly awful. I guess we just realise how out of control the body can be sometimes. Here’s hoping you find all the right meds to kick in and bring you back to yourself.
I appreciate this post, and I’m sorry for everything you’ve had to go through. I also have Hashi’s, and I can relate to a lot of what you’ve said. For me, the chronic angioedema in my mouth and throat is the worst. Losing weight is impossible. My antibodies are off the charts, as my endo put it. So I hear you. Just know that there are people out there who can relate and sympathize. Your blog is a place to say whatever you need to say, so don’t hold back. Keep your head up!
Thank you for sharing this, Keiko. My mother had and one of my dear friends has multiple chronic illnesses. I knew they were both struggling, but never fully understood everything they were feeling on a daily basis. This post helps me understand a bit better.
I’m so sorry you had such a rough week, and I hope you can work with your doctor to start feeling a whole lot better soon!
This post resonated with me, probably more than any other you’ve written.
Chronic illnesses suck. I don’t have thyroid issues, but I know what it’s like to feel robbed of your “self”, like you’re a burden to your husband, and less of a woman because you can’t make your partner into a daddy the typical way.
While my husband knew I had Lupus from the beginning, neither of us imagined our lives turning out the way they have. 18 pills a day, just to keep out of the hospital. Days where only prescription narcotics dull the pain enough to be able to walk. Needing both a gestational surrogate and an egg donor to become parents. I thank G-d every day that he accepts these things as part of being with me, and he still considers me to be the best thing that ever happened to him.
Unfortunately, there are so many people out there who just don’t get it. Dealing with the illness itself is already hard enough, but having to put on a good show for everyone else is just draining.
Thank you for sharing. I’d offer you hugs, but I don’t want to set off another painful itching episode. Instead I’ll send you my best wishes that your thyroid will get closer to normal again and the rest of your body falls into line.
This post resonated with me, probably more than any other you’ve written.
Chronic illnesses suck. I don’t have thyroid issues, but I know what it’s like to feel robbed of your “self”, like you’re a burden to your husband, and less of a woman because you can’t make your partner into a daddy the typical way.
While my husband knew I had Lupus from the beginning, neither of us imagined our lives turning out the way they have. 18 pills a day, just to keep out of the hospital. Days where only prescription narcotics dull the pain enough to be able to walk. Needing both a gestational surrogate and an egg donor to become parents. I thank G-d every day that he accepts these things as part of being with me, and he still considers me to be the best thing that ever happened to him.
Unfortunately, there are so many people out there who just don’t get it. Dealing with the illness itself is already hard enough, but having to put on a good show for everyone else is just .
Thank you for sharing. I’d offer you hugs, but I don’t want to set off another painful itching episode. Instead I’ll send you my best wishes that your thyroid will get closer to normal again and the rest of your body falls into line.
Oh Keiko. I just want to give you a huge hug. That all sounds so awful. I can’t imagine suffering from a chronic illness. I know when I hear about them all I can think is how unimaginably difficult it must be and how thankful I am for my own health. I’m so very sorry you have to deal with all of this. It just sounds so… exhausting and soul crushing. You are amazing to be the advocate you are when you are dealing with so much.
And please know that you could never let us down, not ever. Whatever you need to do to take care of yourself is exactly what you should do. Please know that, now and always.
I hope you and your doctor are able to find a treatment that works for you now and in the future. I hope you start feeling better.
((((((((((((HUGS)))))))))))))
Yes, the guilt. This is exactly what I cried about yesterday in therapy. We talk about so many hard things, but I only cried when I told her I’m tired of feeling like this. It isn’t fair, and it is hard. I’m sorry.
Thank you for expressing the pain. Just when I start feeling I am alone in my IF. Thank you.
Oh, Keiko. I am so sorry you’re going through this. To echo what other commenters have said: please don’t be afraid to tell us about it. Yes, you are tremendously strong and brave. But after reading this, I only have a higher level of respect for your strength and courage.
I hope they are able to regulate your thyroid ASAP. Sending many hugs, my friend.
You are not alone, I promise. I have several chronic illnesses, and I have had that itching. I ended up in the ER because I scratched skin off and had blood pouring out of my arms and legs. I can’t thank you enough for voicing the things that I am so afraid to say most of the time because I am so busy being strong and worrying that I will let people down.
And I have had the co-workers talk about me behind my back and to my face about the sick time. I got so stressed about my job, a great job, an important job, that I ended up on disability and lost that job.
Please use this forum and whatever other forum you want to let people know what you are going through. You are not crazy, You are having a bad day (week, month, year). I am glad your husband holds you when you need it.
Jennifer
(Diagnosed with Systemic Lupus in 2006, since then added Fibromyalgia, Mixed Connective Tissue Disorder, Sjogren’s Syndrome, and Antiphospholipid Syndrome)
Thank you for writing this, Keiko. For reminding us that even the strong need a break from time to time. And for letting chronic pain sufferers know they are not alone.
What is a blog for if not your place to let go and scream at the Universe “This isn’t FAIR!”? Because it’s not, and even strong people have got to break down and get scared/angry/pissed off at the world sometimes.
I know you have the strength to fight this, but I wish you didn’t have to suffer so much. That itching sounds absolutely horrific. I hope your body gets into some kind of balance sooner than later.
I’m not sure what to say, but I felt compelled to comment. I know we are all experiencing some form of pain, but all I wanted to do as I read this, was take yours away. It doesn’t feel like you deserve this at all. And I don’t understand why you have to deal with it.
But you are so incredibly strong. And even when you can’t be, it sounds like you have such an amazing man to help you along.
I wish each of us could have taken 5 minute shifts, and take some of that itchiness away — so you could just have a break — anyone would go crazy from non-stop full body itching! Any pain and discomfort is bad, but when you don’t get a break, its so much harder! I so wish I could have done something…
You have a lot on your plate, but the only thing I do know is that the answer to “What am I still not doing right?” is that you are not to blame. I hold the hope that something controllable is discovered, some useful suggestion, that lets you manage whatever (or whatevers) is doing this… but just because that hopefully exists, has no bearing on you not doing the right thing now. You are trying.. you are looking for answers.. and reaching out for support. When I read the words you’ve posted this year, I have so many times thought “how can she write so well.. do so much…”
On and the sick time.. seriously how can anyone who talks behind your back about sick time… that’s between you and your body. I don’t care how bad or good your job is, you’d be choosing it over coping with this. If they can’t figure that out, … well I have no words for that! (though I feel the same way about all the days I’ve learned I need to take for my body..). Good luck. Thinking of ya!
I don’t know how to put into words what I want to say, but I’m sending you ((Hugs))!
I’m so sorry, Keiko. It has nothing to do with the Pain Olympics. It’s just pain. I’m sorry that you’re hurting, physically and emotionally.
You know, it takes a lot of courage to put something like this out there. Even when you think you’re being weak, you’re actually strong and amazing. I’m glad that you have Larry to lean on.
Just because you are a strong, amazing woman (and you ARE) doesn’t mean you aren’t allowed to cry, esp. when it hurts. So sorry you had this on your plate this week. And always. Chronic illness of any kind – exhausting, draining, maddening.
I am so sorry you are dealing with this. And you are right–you are strong woman. And it will be better. But. It still sucks. [[Hugs]]
The itching sounds horrendous. And terrifying. Much, much sympathy.
That’s it. That’s it exactly. That’s how having a chronic illness feels. And it breaks my heart, because you’re doing everything right, your very best, and your poor body STILL can’t mend, and there’s no end in sight. It’s chronic. You can get better. You never will get well. Massive empathy surge. MASSIVE.
(I have endometriosis/adenomyosis/fibroids/PCOS/migraines. I miss between 2 and 4 days of work every month. I am SO TIRED).