I always thought I appreciated my life. I have great family and friends, a loving husband, food to eat, a roof over my head and a rewarding career. But the reality is, I actually took so much of it for granted. It’s not until you experience illness or hardship that you truly realise how much of your life you never really gave a thought to or appreciated. Simple things like resting my face comfortably against a pillow, putting shoes on my feet, bending my legs or taking a shower – all of these things I never once gave a single thought to..…until they were taken away from me.
What I am going to share in this blog is my very honest and raw truths of what happened to me during my withdrawal from topical steroids. My open feelings on what life was truly like and how I felt, on display for all to see. Some may ask why I feel the need to share all of this with the world? And the answer is this - when you feel like you’ve been to hell and back by a condition that doesn’t get much recognition, you kind of feel like you have a responsibility to humanity to raise awareness. If I can educate people and maybe even prevent this from happening to someone else, then to me, sharing this part of myself is all worth it!
If you haven't read my previous blog 'The Only Way Out is Through', I encourage you to do so before continuing. To truly understand what I am going to share below, you need the background info on topical steroids so that you can understand exactly what's happening to my body.
Strap yourselves in folks– this is a long one!
My Withdrawal – aka being hit by a freight train
“Do you think it would be possible for me to go into a voluntary coma and get woken up one year from now?” I said to my husband at the beginning of my withdrawal, holding an ice pack to my neck to try stop the intense itch while I sobbed uncontrollably.
One week. One week was all it took for the rashes to spread like wild fire after stopping the steroid ointment. Within a matter of days, I had rashes popping up everywhere, in places I never used the steroids and where I certainly never had eczema before. Oh boy, here we go!
I have never, ever, experienced an itch so intense that it takes your breath away. It is referred to as a ‘deep, down to the bone itch’ in TSW forums and help sites. And let me tell you, they are spot on with that description. My husband would often have to remind me to breathe as I would hold my breath when an itch attack would hit me. Antihistamine’s wouldn’t even take the itch completely away and I was popping those bad boys like candy! The only thing that would briefly ease the itch was either extreme cold (ice packs), extreme heat (scorching hot shower) or being submerged in water (thank god we have a bath tub).
Those first few months were so intense and believe me when I say that this is a full-blown DRUG withdrawal. I honestly felt like a drug addict, like what you see off the movies. The crawling sensation of the itch was so bad, I truly wanted to rip my skin off. I would clench my fists, grit my teeth and rock myself back and forth, patiently waiting for the feeling of ants crawling all over my body to pass. I couldn’t regulate my body temperature. I would be shivering (teeth chattering) yet profusely sweating at the same time. I was sweating so bad that I would have to sleep on towels and I once woke up in a literal pool, drenched down to my mattress. I constantly felt like someone was giving me chinese wrist burns all over my body, hot burning sensations. (You know when you were a kid and you would twist each other’s wrists in opposite directions – that’s the feeling I’m talking about.) I would also have big waves of nausea wash over me which would leave me dry reaching. Do you see what I mean when I say that this is an actual drug withdrawal? I couldn’t believe these symptoms were real. It truly showed me just how potent my topical steroids were and how severely addicted I was!
It had only been a few weeks and I already wanted to give up. I wanted to use the steroids again, just like an addict, and my body was screaming for it too. (Funny story – I never really realised how much of a hold they had on me, but my little magic potion would be the first thing I would pack when going away on holidays or anywhere over night, I would literally pack it before I even packed my undies! And I thought that was normal!).
After the first month I honestly could not imagine doing this for any longer. How the hell did people do this for a year or more? The thought of this now being my reality and not knowing how long I would be like this, absolutely terrified me. I truly believed I wouldn’t be able to do it. But I had read so many stories of the people who had made it to the other side, so I decided I owed it to myself to keep going.
I was not easy to live with. I was like a possessed demon when the itch attacks came. You know how they say that if your marriage can survive putting together IKEA furniture then you can pretty much conquer anything? Well I’ll raise that bar and challenge you to go through TSW together. IKEA ain't got nothing on TSW! I honestly don’t know how I am still married. Well actually, I do - my husband has the patience of an absolute saint (bless him). And let me tell you, I was a down right bitch! I should have put a sign on the front door – ENTER AT YOUR OWN RISK!
Ok back to the itch. I tried everything to stop myself from scratching but the itch was so strong. It was not about will power either, no matter how hard I tried, I just couldn’t stop. Night time was the worst and I tried everything to control my hands. I wore gloves and I even taped them to myself! I would tape over my nails with strapping tape, then put the gloves on and then tape over the top of that. And guess what? I would wake up and be completely free of all tape and gloves. I probably could have entered The Guinness Book of World Records for being a master escape artist! Meanwhile, possessed demon Court must have been so proud of her Houdini work. I would have to think of something else to stop her. (Google search: how much does a straight jacket cost?)
As I mentioned before, I found extreme heat one of best the ways to stop the itch. It sounds brutal, but it was so relieving! I would have showers as hot as possible. It felt amazing but in hindsight, probably not good for the skin. One day there was an itch attack so bad that my husband had to hold me down in the bath. I begged him to pour boiling water over me, just to make the itch stop. (He didn’t of course).
When I was uncontrollably itchy it was very traumatic. My skin was so painful and I was so uncomfortable. I would scream and cry and I often told my husband that I would rather die than keep feeling like this. He would tell me that I didn’t mean that and it was just the itch demon talking, which was true. And on my absolute worst day, I spent a total of 5 ½ hours in the bath. Yes, you read that right, 5 frickin hours!
As time progressed, I looked as though I had been burnt. In my last blog I mentioned that steroids narrow (constrict) your blood vessels and that they dilate when you stop using them. A big rebound phenomenon takes place when they are stopped and this is why this condition can also be known as Red Skin Syndrome. People often asked me if I had sunburn, and it sure felt like sunburn with the heat and burning sensations.
I was so surprised at how quickly the integrity of my skin had changed. There was no longer any softness to it. It became tight like leather and started cracking. Some days I would wake up and be scared to move. I felt like a porcelain doll, ready to crack open with the slightest movement. One scratch would easily open my skin, causing it to weep. This made it difficult to turn my neck and bend my limbs. I would also wake up with super swollen eyes that I could barely open. They were so puffy and wrinkly, sometimes I looked as though I had been punched in the face. The wrinkles were such a bizarre symptom, I no longer looked like a young 30 year old. My skin lost so much elasticity and I developed what is known as 'Elephant Wrinkles'. (Wait till you see these photos!)
I somehow managed to continue working for about 4 weeks which was quite hard as I visually had rashes and redness on my face, neck and arms on display for everyone to see. If you don’t know me or what I do – let me fill you in. I have (well had) my own business and I am a remedial massage therapist, chakra-puncturist and healing practitioner. People came to me for all sorts of things – pain, injuries, mental and emotional health or for just general body upkeep. Becoming ill was quite a big deal for me, I almost felt like a fraud and there’s a bit of a stigma in the practitioner world that you can’t get sick. I didn’t know how long I would take to recover and I was still in denial at the beginning thinking it would just be a few weeks, months at the most. I had to cancel all my bookings and leave people hanging as I couldn’t tell them when I would be back on deck. This was so hard, I felt like I was letting everyone down. People relied on me for the maintenance of their health and I genuinely loved and cared for all my clients. I had a very loyal client base who I had been seeing for many years, some almost felt like family, so you can imagine my heart break when I could no longer care for them.
Now this line of work requires me to use my hands. Those first few weeks my arms and hands weren’t too rashy and I could continue to work comfortably, even though I felt terrible on the inside with other symptoms. But soon my arms and hands became too painful and I had to make the decision to call it quits. Taking away my hands was like taking away my identity. Who am I if I can no longer do what I love? And if I’m not working, I’m not contributing financially to our household. Now this was tough. I’ve always been independent and liked having my own money (and by that, I mean I loved a good Kmart splurge. Ladies, you feel me😉). Accepting this was pretty hard but I am so fortunate that my husband has a great job and that financially we could survive on one income.
I’ll admit that at first there is a lot of vanity involved in this process. There was no way in the world I wanted people to see me like this. I looked and felt dreadful. I became the person that people would stare at in shopping centres, and this was tough. People would literally do double takes. I know it’s hard not to stare, I’ve done it myself when someone has something visibly wrong with them. But I’ve since learnt how tough being on the receiving end is and I will never do this to anyone ever again.
Now let me tell you a real doozy of a story of someone staring at me. I have always found the beach to be my safe haven and I would retreat there during my withdrawal when I wasn’t doing too good and I needed a break. I was once walking back to the unit after having a swim and this lady was coming up from behind me and I could just feel her eyes on me. She stopped beside me and looked down at my feet with her mouth wide open (they were bright red FYI and the worst part of me), she then proceeded to walk ahead of me but then she stopped, turned around and stared back down at my feet to have another look. Subtle right? She then whispered to her husband and they kept walking. Did you ever watch the show Ally McBeal? She would have these little made up scenarios play out in her head whenever anything happened in her life, like an alternate reality. Well I had one of those moments with this lady. It went a little like this – I sucker punched her in the face…. POW! Take that lady!!!! (the song 'Eye of the Tiger' was playing along in the background cheering on my victory of course). But if you know me, the chances of that actually happening are slim to none. You could literally give me a mullet at the hairdresser and I would still smile and say thank you. So off I went and kept walking back to our unit like the true hero that I am.
The last of the skin symptoms I’ll tell you about is the skin shedding and the ooze. It is next level! I am honestly amazed at how the body can rapidly produce so much skin and fluid in a short amount of time. I would have to bandage parts of my body to stop the ooze from leaking everywhere (gross girl, too much info!). The skin cycle for me would often go like this; red, rash, ooze, flake and repeat. There is so much skin everywhere constantly, it's actually a bit deflating at times. I have to vacuum every day, sometimes multiple times a day. I constantly have to wash clothes, towels and bed sheets. It’s like a snow flake party, but not one you want to be invited to!
Now it wasn't just the skin that was affected in this withdrawal. This was more than skin deep; it was a whole-body process and I was in a constant state of fight or flight.
Friends, are you ready to jump on board the Courtney freight train? There's a few stops on its course so buckle up! (Tickets are non-refundable..soz!)
During this process I had 4 painful ear infections and I'll never forget the first one. I can't ever recall having an ear infection so I had no idea what was happening to me. I actually thought I had an abscess in my ear, I could feel a massive lump and the throbbing pain down my jaw and neck was so bad that it made me quite ill. I should mention that at this stage I had read every horror story on the TSW forum sites and I had given myself so much fear and anxiety from reading what others went through. I was so scared of being hospitalised and having steroids forced on me like others had so the minute something went wrong with me, I panicked. I can remember waiting at the medical centre and out of nowhere I had a full-on panic attack. I was so out of sorts that I had to call my mum to come sit with me until my husband could join me after work. I then proceeded to get another 3 ear infections over the coming months and had to take several courses of antibiotics which unfortunately would affect my gut and then in turn, disrupt my skin. Each infection felt like a massive blow and set back.
I became so sensitive to foods and the environment. Navigating food was like walking through a mine field, one wrong move and an explosive mine could go off and cause my skin to erupt. As I’ve mentioned before, my diet has always been fairly restrictive (no gluten, dairy etc), so it was really challenging when I had to refine this even further. My staple foods soon became a problem for me. I could no longer eat eggs, tomato, spinach, bananas, tuna, citrus and the list goes on. I basically was living off chicken, broccoli, white potato and rice for a while. I also became so reactive to pet hair, grass and dust that I would constantly welt up. The reason these sensitivities were going off the charts is to do with something called IgE. IgE stands for Immunoglobulin and they are antibodies produced by the immune system when your body thinks there is an allergy. Without the steroids and because my immune system was no longer suppressed, my body went into overdrive thinking everything was a danger to me. You might want to hold onto your hats for this one...a normal person usually has an IgE level of anywhere between 0-100 and I am currently sitting at 22,000! On steroids, I was just under 3000, so still quite reactive but not to this extent. Cheers to being allergic to the bloody world! (#allergygirl)
I developed many cysts during this process as well. Some were painful and restricted me from moving my limbs. I think the total count was 6 on my body. I also developed a few cases of blepharitis, which are eye cysts.
“What the F!” was a common phrase I found myself saying over and over again. How much more can go wrong? Ha ha, don’t ever say that to yourself. It will always get worse!
TOOT TOOT! We have arrived at our next freight train destination....
At around the 3 month mark, insomnia crept its way into my life. At first, I couldn’t sleep because I just couldn’t get comfortable. I couldn’t rest my face against my pillow and I couldn’t have my legs touching the sheets without them irritating me. I had a lot of ooze and weeping skin and I would stick to my clothes and sheets, so it was kind of expected that my sleep would be disrupted. But once my skin was manageable, I still couldn’t sleep. It was like my body had forgotten how to. I used to be a solid 8-10 hour sleeper, a bomb could go off and I wouldn’t wake, so not sleeping was a massive shock to my system and I struggled immensely with it. If I had to name a symptom that was the most debilitating during this process, it would be the insomnia. I now understand why it was used as a form of torture in the old days. There were nights I wouldn’t sleep at all. I would watch the clock tick by and see the sun rise. I couldn’t even nap during the day. It felt like something was broken inside of me, like a computer program had malfunctioned. I was a walking zombie and this triggered some pretty intense anxiety and depression. I no longer felt like myself. I was so deeply fatigued that I felt like I could collapse at any minute. I couldn’t function and I was severely worried for my mental health because the lack of sleep made me feel crazy. I developed a real fear of going to bed at night knowing what torture lay ahead of me and I had several panic attacks as a result of this. You would think that my body would just give in from sheer exhaustion and finally sleep, but my body was continually running off adrenaline and I was in this crazy tired/wired cycle.
I tried everything to help me fall asleep - drowsy antihistamines, sleep herbs, magnesium and lavender baths, melatonin, meditation and hypnosis sleep tracks. I even googled and tried the technique army soldiers use to sleep but nothing would work! After a few weeks, I couldn’t bare it anymore and I knew I needed help. I sat crying in my doctor’s office and begged for some prescription sleeping tablets. I was so excited to take these, yes finally some sleep! I told my husband to make sure I was breathing through the night and to wake me up in the morning before he left for work, just in case. But like some sick joke, they didn’t work. I couldn’t believe it! This could only happen to me. So I tried again the next night and the next, still nothing. I then tried a different prescription, and still nothing! Do I need a bloody horse tranquiliser? My Dr couldn’t understand why they weren’t working. We eventually gave up because all they did was make me feel groggy and hungover the next day. I eventually was able to fall asleep around 4am and I would get about 3 hours. This would go on for months and it was crippling. The sleep deprivation unfortunately took me to some very dark moments and this is why it's so important to have a solid support network in place. I knew to reach out to friends, family and practitioners when I felt like I couldn't go on anymore. They couldn’t help my sleep but they could support my mental health and this was all that mattered.
Toot toot! Next stop....
Remember in my last blog how I said the steroids gave me a fake armour and without it my invisible shield came crashing down? Well, I somehow contracted a nasty virus at around 9 months into withdrawal. The only way I can describe it is that it was similar to shingles. I went to bed with a sore head and woke up in excruciating pain. I had an intense fever and had sores all over my face. I don’t think I have ever been in so much pain yet so sick at the same time. It was like a deep throbbing mixed with nerve pain and I was so ill that I had my head in the toilet bowl. We contemplated going to the hospital but I wanted to see my Dr first (fear of hospitals giving me steroids remember). I had to take a course of anti-viral tablets, anti-nausea tablets, codeine and antibiotics. I lived on hydrolyte ice blocks for a few days. My test results came back positive for staph but negative for something called Eczema Herpeticum, which is a viral condition we thought I had. This little speed bump was a bitter sweet moment, I was so sick that my body finally shut down and slept for 3 days straight. A true miracle!
As you could imagine, my body was under an enormous amount of stress. So much so that I lost a lot of weight. Every girls dream right? No exercise and weight loss! In the beginning because I had to restrict my diet, it was only natural that I would lose weight. I was also experimenting with intermittent fasting early on and that contributed to a little weight loss. But once sleep became an issue, I was constantly hungry so I had to eat a lot more and eat more regularly to keep me going through the day. Eventually my food sensitivities had slowly subsided and I could eat a lot more which was great. Family and friends would show their concern over my weight loss though and would question whether I was eating. I remember I went away on my parents beach holiday for a few days and I was so relieved for them to see me actually eat. They soon learnt that I could eat like a horse! This eventually became worrying though, no matter how much I ate I couldn’t seem to stop losing weight. And because of the stress and adrenal fatigue, I lost a lot of hair. I lost most of my eyebrows at one stage and had minimal body hair. The hair on my head is still unfortunately falling out in clumps and I’m not sure if I will have much left soon.
Are you still with me? I know this has been super long! I probably should have written a book instead of a blog but hey, here we are.
My husband would often say to me when something would happen: “Surely that’s the last bad thing to happen to you”. But saying that was like cursing me. Damn you voodoo magic!!
TOOT TOOT! Guess what? There's another destination on this glorious freight train….
My body had no idea what it was supposed to be doing. My adrenals, liver, kidneys, skin and lymphatic system all wanted to join the party. My inflammation markers were constantly increasing and throughout the withdrawal my lymph nodes would often be swollen in my neck, armpits and groin. This is common with this condition and kind of a given since the immune system is in overdrive. One lymph node in my groin stayed raised for about two months. I knew it wasn’t right, so I went to my Dr and he sent me off for a scan. The scan came back that a few of my lymph nodes had merged together and were measuring over 7cm in length. Yikes! My Dr referred me to a Haematologist for further investigation. I was being checked for lymphoma and my referral was for a cancer clinic. This was a very surreal experience. The specialist wanted me to have some more bloods taken and to go have a biopsy. He had said that because my blood work showed risk for disease and that the way the lymph nodes looked and measured, there was a chance this could be lymphoma. Poor guy, I burst into tears in his office. Have I given myself cancer because I stopped using steroid cream? OH MY GOD! Cue some more meltdowns and stress. I went for my biopsy and it was pretty scary. I had to have a local anaesthetic and the needles they used to take the 3 samples were enormous. There was about a 10 day wait on my results and let me tell you, they were the longest 10 days of my life! But I am so happy to say, that thankfully, it all came back negative and I could finally breathe again. That’s one stop on the freight train I don’t ever want to visit again.
Now, it wasn’t all doom and gloom. I would often get weeks of reprieve and I even managed to have an amazing holiday in the Whitsundays, attend a music festival and enjoy Christmas. This process is a rollercoaster that constantly goes up and down. I found that my skin would change so quickly. Some days I would be good and some days I would be terrible. Some days I could be good in the morning and then flaring by the afternoon. It was truly unpredictable and I never knew what each day would bring. Twice I had thought I had healed, during month 4 and month 7. Which is why I could go on a holiday and have a bit of a normal life again.
How the skin can be almost completely clear and then come back with a vengeance in a matter of hours or days was mind blowing. People would often think that because my skin looked good, I was healed. They would comment and tell me that my skin looked good, but the reality was, I was a ticking time bomb. I would make the most of my good weeks though and I would find victory in being able to do the weekly grocery shop or visit family and friends.
This whole withdrawal often felt like torture and it quite honestly broke me. I was house bound for many months. I would spend my days going from the lounge to the bath/shower. Hours would pass just from scratching and slathering myself in any lotion I could find to try relieve the discomfort. Each day felt like Groundhog Day. Remember in my last blog how I thought I would be so productive during this time? Well enter the sloth life! There were days I could only pull myself together for half an hour to make dinner. I couldn’t sit still long enough to watch tv or read a book. I couldn’t drive myself to the doctor or anywhere for that matter because of the insomnia and fatigue. I couldn’t do any house chores. I couldn’t exercise. I couldn’t even pat my beautiful dog. Forget about intimacy too, I could barely tolerate a hug. I felt so useless and the biggest burden on my family. I had always been pretty independent, so having people come cook, clean and drive me everywhere was really hard to accept at first. I missed many social events of loved ones and I went M.I.A for a long time. I even missed playing in my semi and grand final for netball and if you know me, that’s a pretty big deal. I’m the biggest netball nerd in town!
You want to the know the crazy thing? Even though my story sounds bad, there are so many out there with this condition who have suffered far worse than me. Skin wise, I actually got off lightly in comparison and I think that my diet and lifestyle over the years definitely softened the blow for me. Every symptom I would experience though, most TSW sufferers had experienced. I would use the search tool in the support groups when a symptom would pop up, and sure enough the same thing had happened to others. The scary thing is that some had only used topical steroids for a matter of weeks and still developed nasty repercussions. It doesn't matter if you use them in the short term or long term - there can be serious side effects and they aren't a problem until they are. Steroid Addiction and Withdrawal is real and thousands of us all have matching symptoms. This is not eczema, eczema cannot give you these crazy symptoms. This is the result of a drug. And a dangerous one at that!
Trying to control TSW is super challenging. What worked one week, often wouldn't work the next. I could use a moisturiser on my legs but my arms would reject it. What I ate one day would be fine, but then it would become a problem the next. My supplement regime would work for a few weeks and then I would either become immune to them or react to them and I would have to start all over. I started flaring premenstrually too with every cycle. It was so frustrating trying to track everything that could be contributing. There's no one size approach to healing TSW, or any condition really. The saying that ‘one man's medicine can be another man's poison’ is absolutely correct. A holy grail treatment, cream or supplement could be mentioned in the support groups and it would be magic for some and yet set others 10 steps back. But I will tell you this - my greatest healings often came when I detached from trying to fix myself and just allowed my body to do what it innately knows to do, which is to heal and care for me. I had to accept that my body was recovering from a drug and that my organs will purge this poison until it has fully cleared from my system. I started working with my illness and not against it. Ride the roller coaster babe, you can't control it no matter how hard you try! And do you want to know what happened when I did? My anxiety, fear and depression all disappeared and I started being less reactive to foods again. Ahhh, acceptance...you're a beautiful thing!
This process truly takes a village and I am so thankful to have the best support network of doctors, naturopaths and healers. I was fortunate to find two doctors who supported me 100%, other sufferers aren't so lucky and they face some serious battles with the medical world on their journey. My Dr's never questioned if TSW was real and they never forced steroids back on me. In fact one of my doctors in my first consultation couldn't believe I was never told to not use topical steriods for longer than a week because of the serious side effects. Go team!!!
To my husband, family and friends - you'll never know how much your support means to me. This hasn't just been my roller coaster, its been our roller coaster. From the bottom of my heart I thank you. I love you all dearly.
Ok enough reading. The freight train has officially left the station. (Bye Felicia!💋)
Thanks for being a trooper and sticking with me on this one! I know it’s been long and heavy, but it’s what happened. I couldn’t sugar coat it and I couldn’t sum it up any shorter than this.
But I'm not done with you yet.....it's time to take a visual look at what Topical Steroid Withdrawal is like.
Press play! (Viewer discretion - some of the photos and footage in this video may be confronting).
Comments