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.
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.