This is my story – What eczema is really like

I want to be completely transparent. The last 2 months of my life have been a living hell. Physically and emotionally torturous, the worst form of suffering by far I’ve ever experienced in my life. It’s hard for me to explain because you might be thinking, “How can a rash be THAT bad?” Before developing eczema on my hands, I never would have been able to imagine how a skin condition like this could affect you so much or be so debilitating.

Traveling to see my family at the end of June this summer resulted in a MASSIVE flare up of what had already been an exhausting and difficult eczema condition to manage.

Every day has been spent just trying to survive. My life has stopped; I’ve become bedridden pretty much 24/7, unable to do almost anything with my hands because of the relentless itching, burning and stinging. I cannot stop itching, scratching my hands, wanting to scratch my hands, fighting with all my strength to NOT scratch my hands. It’s a 24/7 job that leaves me physically and mentally burned out. I’ve never had something take over my body and mind before in the way that this rash has. Never experienced something like this before that made me feel so entirely out of control, emotionally and physically broken and in total agony.

I cannot sleep at night due to constant and ferocious itching. Every second of every moment is spent tending to my hands, not because I want to but because it is impossible to get any kind of relief. And believe me, I’ve tried all kinds of creams, lotions, aloe, anti-itch stuff… most of it just aggravates my skin and makes things worse.

If I don’t keep my hands constantly elevated and shaking in the air, the itch is overpowering and I will give in to itching them. Once started, this quickly becomes impossible to stop and splits open my already inflamed, dry and burning skin. In fact, if I now scratch my hands even a little, the skin starts oozing pus and weeping, my fingers swell, and tiny hairline stinging cuts break open everywhere. It’s disgusting, it’s torturous and it’s completely traumatizing. So I lay in bed and shake my hands in the air constantly. I shake them so much that I feel like my arms will break off and my body and mind feel completely exhausted and I’m crying because all I want to do is close my eyes and go to sleep. But I can’t stop and I can’t fall asleep.

Every night I lay awake in bed shaking my hands The.Entire.Night. Sometime around 5 or 6am (I’m not sure if it’s due to physical and mental exhaustion or the itch finally easing up a bit) I finally pass out and manage to get an hour or two of sleep in before waking up to it starting all over again.

I am running on 1-2 hours of sleep every night. On a good day, I might be able to get in a 30 minute nap. I look and feel like a zombie. I can’t work. I can’t garden. I can’t visit friends. I can’t leave the house. I can’t take care of my rabbit. I can barely take care of myself. I can also barely walk since the other thing that developed while traveling is major edema in my right knee, the same thing that happened to my feet 6 years ago; the same thing that happened to my right knee when I returned from Southeast Asia 2 years ago. I limp around the house when I need to get up and move about and am unable to bend my knee.

Water, even a little splash on my hands, feels akin to throwing acid on them because of all the inflammation and cuts. I cannot get my hands wet. The mental anguish this skin condition has created zaps my energy, sends rockets of fear churning through my body and by the end of the day I feel totally rundown simply from tending to and working around my constant wounds. I feel terrified to wash my hands. Terrified to shower. Terrified to leave the house because I’ll pick up a bunch of bacteria and germs on my hands that I won’t be able to wash off and that will ultimately make me even sicker. It’s been weeks and I haven’t left the house even once, other than to go in the backyard a few times. Not that I could even do much at all if I left. My body is exhausted. My mind feels shot. I’ve had to start wearing cotton gloves 24/7 in order to try to lock as much moisture as possible into my parched hands and also to prevent myself from scratching (which, depending on the time of day, is difficult to impossible to do).

I go throughout each day swinging back and forth from devastation to misery to hopelessness to grief to fear to profound loss. Every day is spent crying. No, every day is spent sobbing. Every day is spent hoping it just comes to an end. It’s not that I want to die exactly but I don’t want to live – not through this. My only moments of peace are when by some miracle I’m able to distract myself enough to get the focus off the intense itch and burning of my hands and onto something (anything!!!) else! So far, watching TV is the only distraction that seems to offer some brief moments of peace – it has a way of strongly catching my attention without effort on my part needed and I can shake my hands constantly while watching. So I tend to have TV running for the majority of my day.

This is the worst suffering I’ve ever experienced in my life and I don’t say that lightly. I’ve been through a lot of trauma in life (in the past few years alone there’s been multiple deaths of close family members here and here, job loss, home loss, financial loss, sickness, a lawsuit, family illness). But none of that even comes close to the agony I feel on a daily basis with this eczema condition. I feel so devastated, this huge sense of loss from not being able to live my life. I can’t do the things that make me happy, that bring me joy, that allow me to contribute and give.

My life has become a series of survival mechanisms, every minute of every day just trying to make it through to the next. Other than laying in bed fighting the urge to scratch, making food for myself takes up the entire rest of my day. A smoothie which used to take a mere 10 minutes to prepare now takes me an hour. I don’t dare take off my cotton gloves to do anything except put more lotion on, because taking them off would expose my skin to more air and more air means instant drying out. Everything takes ten times longer when wearing gloves. Cooking of any kind is a juggling act of sorts with two layers of gloves on, the cotton gloves to provide a soothing barrier, and a waterproof baggy rubber pair of gloves on top of that, the only way I’m able to wash fruit and veggies. I’m grateful I’m able to prepare what food I can for myself but the entire experience is hardly enjoyable – it’s challenging, stress-filled, full of adrenaline and fear, and involves me trying to get done as soon as possible so I can collapse back in bed and shake my hands in the air to relieve some of the itching and burning.

Thank god my boyfriend helps me out by doing what he can in the mornings before he leaves for work. Without him, I’d have to hire some kind of in-home private care. Besides helping prepare some of my food for the day which entails washing and drying several lbs of produce, he also makes Meadow’s breakfast, waters the lawn, does the dishes, waters my plants and flowers, takes out the trash, cleans up the kitchen – all before working his job for 8-10 hours a day! I feel horrible that he has this extra burden and stress of having to do everything because he is stretched thin and suffering as a result too.

I feel like a failure most of the time, a burden to my partner and a bad mother to Meadow, my rabbit. It’s heart-wrenching that I can’t take care of Meadow when I once used to spend hours of my day with her. She often sits in front of the baby gate to my bedroom staring at me in bed, sometimes sticking her head through the bars trying to get to me. It breaks my heart that she’s feeling abandoned and misses me but I don’t have it in me to pet her for long periods of time. I don’t have it in me to focus on anything other than myself right now. I am barely getting by. It just hurts so much.

I feel like I’m operating out of a 5% full cup every day, even though 90% of my time is spent laying in bed. And the thing is, I have no idea when this suffering will finally end. I have no idea how long this agony will go on for. Will it be another month, 6 months, 2 years from now of 24/7 nonstop hell? It’s hard to see beyond the pain because it almost never ceases; each day brings more and more and more of the same. All I know is something has to give. Something has to change. I cannot keep living this way, just barely hanging on. I’ve always considered myself a strong person, a positive person. But this, this is breaking me.

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The above was written in early July, during the worst of my eczema suffering. Every word raw, honest, gritty, incredibly hard to write and also incredibly humbling. A month and a half later, things have improved a bit, at least improved enough for me to put this post together, which in July had been in no way possible!

The itching has gone down throughout the day. The redness has reduced. My left hand is actually almost healed and rarely bothers me now. However, my right hand is another story, with its healing going much more up and down. Some weeks I see and feel lots of relief; then my period comes which lowers my immune system and things quickly get BAD – my right hand becomes extremely red and relentlessly itchy, my finger joints swell, everything feels prickly and burning and I spend almost the entire day shaking this hand in the air. My right hand goes through periods of looking fairly ok and then looking like the hand of a burn victim. Still, nothing feels quite as agonizing as things were in July and that, to me, says improvement. No matter how small, it’s improvement and this small level of relief has restored a bit of hope in me in place of constant fear and despair. Also, the edema in my knee is almost completely gone and I can bend my knee again!

Am I homefree now? No. Not by a long shot. I’ve been working hard everyday, through the torture and suffering, to focus on implementing an aggressive anti-eczema food and supplement protocol and healing is going to take time. Chronic skin conditions don’t clear up overnight and because I do have a long history of skin conditions (mainly psoriasis) going back 15+ years, I have a feeling this is going to take quite a while to fully eradicate.

But I have hope again. I have HOPE. I have restored faith. I have a plan. And I have gratitude for getting to this point thus far where some small level of suffering has been alleviated. This means I’m moving forward. It will get better and better from here.

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I have not been productive whatsoever in the past 2 months. This is a hard thing for me to come to terms with but I’m realizing that the only goal of my day every day, at least for the time being, should be to get well. That’s it. Everything else, while of varying degrees of importance, ultimately can wait and has to wait, because everything else depends on my health.

There is nothing as important as feeling well.

It’s made me realise that if I truly believe this and stand by this statement in life, I need to lean into it and really live it on a daily basis. For me, this has meant stepping away from 90% of my work for an undetermined amount of time. For me, this means the majority of my day everyday is still spent in bed (though I’m happy to say that I’m now able to spend time with Meadow, water the grass, do some light housecleaning and sit in the backyard to get some sun, which has been very healing for me). I’ve also been able to take a couple short walks outside around the neighborhood. It’s amazing the tiny things we feel grateful for once we’ve experienced losing the ability to do them.

My focus these days is on getting well and keeping my stress level down because extreme stress has played such a big role in this condition developing. The other big focus of mine is eliminating chemical, pesticide and toxin exposure as much as possible, as I know these are big triggers for eczema flare ups. Because I’m still not sleeping enough at night, there is currently no set schedule I’m keeping – for meals, for work, for sleeping, anything. I sleep when I can. I eat when I’m hungry. I watch TV when I need a major itch distraction. I work when I can. Mostly though, I eat and I rest.

And I’m trying really hard for that to be enough because my healing depends on it. I’m trying to give myself love and encouragement for simply getting through another day. For the tiny improvements and steps forward being made. All of it matters.

I’ve been pushing myself to write truthfully about this experience because I know that showing our struggles and low points as well as the good times can really bring light to others, especially in this age of social media where everyone seems to be living their best life. It’s important to realise that everyone struggles in some way, whether it is financially, emotionally, with a health condition, self-worth issues, relationships, or something else. Everyone experiences hardship and situations that will bring them to their knees. I hope by sharing about my health, I can remind you of this.

I have so much love and compassion for anyone going through a skin condition like eczema or for anyone suffering with a chronic health condition in general. The physical and mental toll it takes on you and your loved ones is terrible. It’s something that no one should have to go through. Yet millions of us do everyday. I really understand now what it’s like, how bad it can be.

If you are currently suffering in some way, please know that it won’t last forever. Perhaps you, like me, have been struggling with keeping the faith. Perhaps your suffering has been going on for a long time. Perhaps it’s broken you down and, like me, perhaps you have a hard time seeing beyond anything more than agony and pain. Because every day is still filled with more and more and more of the same. Perhaps you, like me, feel some days like you’re barely hanging on and struggling just to make it through. If so, let my story above be a guiding light that things gradually DO get better. They WILL improve. Allow yourself the time and space to rest, to eat supportive foods, to gently care for your body and mind in simple ways without judgment or expectation of how long the process should take. Because for each one of us and our unique makeup, the situation will be different.

There is no timestamp. There are no set days or weeks or months or years that it takes for us all to “be healed” and move on. But there is the unshakeable truth in life that nothing ever stays the same forever. This season of suffering in your life, no matter how hard, will eventually pass as seasons always do. Relief does eventually come, seemingly hopeless situations improve. I am living proof of this.

I plan to blog more of my healing journey with eczema in the coming months and it feels good to vulnerably share about what I’m going through. Are you struggling with a debilitating condition or situation in your life right now? Reach out. Connect. There are others who can be helped by hearing your story too.

Read part 3 of my healing journey with eczema here