“When you get to the end of your rope, tie a knot and hang on.”
Hey, Lovelies.
I tied a knot a couple of days ago.
I hung on.
Over the years I’ve become pretty good at that. I can hold a smile and a kind word and keep going, no matter how awful I feel, no matter how tired, no matter how much pain. (Someone asked me recently if I ever experienced pain, and I struggled to identify the last time I was pain-free. The best I could come up with for that was maybe when I was last under anesthetic. Discomfort is the background music in my day, and the only thing that varies is how loud that base note of pain might be from hour to hour.)
So, here I was a few mornings ago, feeling quite ordinary. Nothing new there. I had a big day scheduled – client readings, packing Etsy orders, working on updating a course and a few other time sensitive things. I meditated, got dressed, came down early to my desk in my home office at 6.15am so I could smash out a few emails and messages before I began client sessions at 8am. I was in a positive frame of mind. My body just hadn’t caught up yet!
Still, I felt as if I might be coming down with the flu. My neck was stiff and sore, my lower back ached. I’d woken with a weird kind of crusty eczema on my top lip which I’d managed to hide with makeup.
Yeah, I didn’t feel great. But that’s so often how my day starts that I didn’t give it a second thought.
As I worked through my first reading an ugly itchy rash erupted on my neck. It was embarrassing, and I did my best not to scratch it, or draw attention to it.
As I kept working, I began to feel worse, but I was managing. I got my second client session underway.
Then suddenly it felt like someone was dropping tiny drops of molten metal or acid on my skin. The pain on my body was random. In my hairline. Then my inner thigh. Inside me, somehow, in my gut. My ankle and the back of my neck. The frequency increased and soon it was as if I had tiny fire ants biting me all over. The rash spread. I wanted to rip off my face and gouge my own eyes out with a teaspoon.
Obviously, I didn’t. I reached the end of my rope. I tied a knot. I held on tight.
I finished my client session, and messaged my sister, who is also my PA, and told her I felt dreadful and was starting to have shortness of breath.
And then I remembered.
I had felt this exact set of agonising symptoms before, back in 2013, when I’d suffered a rare adverse reaction to Bactrim – a sulfonamide antibiotic that had been prescribed as part of my Lyme disease treatment. I’d kept trying to push through and ignored the misery and weird burning sensations until I was screaming from pain and rushed to hospital and into the ICU where I was eventually diagnosed with Stevens-Johnson Syndrome. It was so bad that the skin peeled off me, and everything ulcerated. I tried to manage my pain but ended up needing to be sedated to cope. It took a long time to fully come back from that.
Stevens-Johnson Syndrome is something other members of my family have suffered too. I guess we have some kind of genetic abnormality that makes us mor sensitive to certain chemicals and drugs.
A new doctor has recently changed my thyroid meds, and on the new regime I have suffered excruciating reflux, so bad that a sip of water could make me want to vomit, and I had to sit up to sleep. At the beginning of this week, when I went for my review, the doctor put me on another drug – a proton pump inhibitor – to help manage the reflux so that I could tolerate the thyroid meds until my body became used to them and the nausea and reflux settled down. I had agreed reluctantly, because I was so miserable, but I had also noticed improvements in my overall health from the new thyroid meds, so I was prepared to do what it took to persevere a little longer.
I’d taken just three tiny tablets of this pantoprazole drug. One at 8am, and one at 6pm the previous day. One at 6am the morning it all went pear-shaped. Looking back I can see that I had symptoms from my second dose, but had explained them away as other things.
As my symptoms escalated I tied that rope, and I hung on. The pain ramped up fast. When I saw my way clear I called my doctor’s practice and left a message. By the time they called me back it felt like someone was pouring gasoline on random parts of my body and lighting a match. My doctor told me to go straight to the emergency department at the local hospital.
Luckily, I caught it earlier this time. Early enough that I only needed a short stay. One where I managed to keep breathing and only whimper rather than scream, and where I did not punch anyone or smash all the things, even though that’s all a part of me could think to do when faced with such stupid amounts of pain.
I am home now, but I still have symptoms – the things that feel like fire ant bites are down to a few bad ones an hour, and many much more mild ones, and they are painful rather than something I have to breathe through while pressing my fingernails into my palms and hanging onto that damned knot on the end of my rope. The sensation of being set alight has almost gone. I still have painful itchy rashes on several places on my body including my lower face and neck. My lips are swollen and tingly still. And inside my nose, mouth, esophagus, eyelid, digestive track and other mucosal membranes the skin has blistered. Everything hurts. It hurts to blink. It hurts to swallow. It hurts to pee. But it’s better than it was. I’m managing. I’ll stick to a soft foods and liquids diet the next few weeks. I’ll use all my calming lotions and potions and pain relief. I’ll manage.
So, I’ll be going quietly for a few more days, as I navigate my way back to more solid ground.
Honestly, you never expect something like this, and it’s the last thing I would have thought I might be dealing with at my busiest time of year – but that’s life with chronic illness. Crap like this happens. More often than I would like. And yet, I still forget to take that into account when I plan.
I’ve had to reschedule a few client readings. But I’m on top of my Etsy orders and happy to potter away wrapping Planners and writing love notes to you all in between rests. I have my headphones on and a great playlist. Music takes my mind off my discomfort and is a great coping strategy. Please know I am happy to keep fulfilling orders. Really. I’m not okay, but also, I’m pretty okay.
(Did that not make sense to you – the I’m not okay, but also, I’m pretty okay? Haven’t you had moments or days or weeks of that too – where part of you is not coping, but part of you just keeps on trucking? I’m still trucking, and each day I get a little better.)
Anyway, I thought I’d give you an update.
I know some of you will now want to come racing up to the Treehouse to help me pack orders, but honestly I have it under control. It’s not an automated process. If you order something from me via Etsy, I choose it for you. I feel into you, and I ask the Universe. I choose any additional grid crystal that might go with your purchase. I gift wrap your order and write you a card. I pack you a lolly bag. It takes time and care, but that’s part of my process. It’s how I honour you. It’s how I show you how grateful I am to have you in my life, and hopefully it helps you to know that you are loved. That’s not something I can delegate. How do you delegate love?
So, that’s my latest news. It sucks. But it’s okay.
I’m managing.
And I love you.
And I love you.
Big hugs, love and light from itchy-scratchy-ouchy me xoxo
Oh Nicole
I am so sorry!
I use Weleda Natural Calendula Nappy Change Cream with Zinc for all things burn and itchy, I know its for babies, but needs must.
It’s like a little angel’s kiss on your pain!
Well wishes from Brasil
Clarissa
Sounds wonderful, but I am horrifically allergic to the Asteraceae family of plants! But thank you so much for the suggestion. Hugs and love xx
Sending love and light to you, Nicole. If you will allow it, I would like to send you distance Reiki. Let me know if this is agreeable to you.
That would be lovely. Thank you dear Judy xx
Thank goodness you caught it earlier this time, I really hope the discomfort and pain goes away as fast as possible. You are, as always, held in love.
Nicole, Know that you are so very loved and sent absolutely oceans of well wishes for a rapid recovery to an improved health. “Your turtle” is bobbing in that ocean and sending you loads of supportive and healing energies. May every single hour see the symptoms flow away from you. Sending you love, hugs and the arrival of an improved normal for you. Blessings always , Jocelyn
Going through this must be hard for you and I know all you can do is take life one day at a time while coping the best you can
You are a force of nature and an inspirational light! Sending you much love and rainbow light for your healing…. Jx
Hi Nic, that drug sent my two daughters and myself “round the bend” when we were prescribed it!! we all had severe reactions at different times (however, the different Doctors did not agree and stated that they knew what they were doing and that nothing was wrong!!) – I am glad you caught it early on, we were not happy campers and it took some time to get it out of our systems. Much Love xx
I have followed your health journey for many years, it breaks my heart to see you suffer when your whole life is devoted to helping others . Look after yourself, rest and know that we care xx
I’m so sorry you have to go through this, it’s not fair. Sending love xxxx