A day in the life of TSW

A day in the life of topical steroid withdrawal is exhausting, painful and relentless. Here’s an insight into how it was and how much things have improved for me during the process. I am now 1 year and 5 months topical steroid free.

• Starting the day with very little sleep, sometimes 1-2 hours, sometimes none. Resting throughout the day has been almost the most important factor for me for healing. Night times were so itchy and difficult that any rest in the day is essential.
• Waking up to the alarm knowing you didn’t get much sleep. I tried to not have an alarm and sleep in when I could, but on days when I had to get up, an alarm or ten was needed to wake me. It amazes me how well I coped on so little sleep. However the last few months I feel like I’m sleeping for England and catching up a year’s missed sleep.
• I often had blocked ears, I assume due to skin shedding inside the ear cavity, so this made it doubly hard to hear alarms. It made me so deaf and was a horrible symptom to deal with. Daily olive oil spray into each ear really helped. I also mixed apple cider vinegar, a drop of tea tree and put a few drops of that into my ear too. Also Sodium bicarb ear spray. I had to have them sucntioned twice professionally, the last time being just before lockdown and luckily it never blocked up again. This lasted about six months and is no longer an issue, my ears are fine now. Thanks goodness.
• My eyes are always completely glued shut. Not with conjunctivitis just some kind of white gunk. It would be so painful to open them and take me 10-15 minutes before I could without pain. I find a cotton handkerchief to dab the eyes and soak up the leaking helped. My eyes are still swollen and glued shut sometimes but it’s getting less and some mornings I wake up and I can open them and it doesn’t hurt. This is rare but I’m looking forward to that being the norm. Once I’ve cleared the gum it no longer hurts but it’s just a part of the TSW process. The body is moving out toxins any way it can, and one way is through tear ducts and lymph glands in the face.

• Morning Flake – Once you can open your eyes you can survey the skin to see how the day is going to go. Most mornings will start with my full face flaking off. The cycle of TSW goes from burning, redness, to splitting and oozing into a crust, and then the crust then finally flakes off in huge massive flakes of skin. It can be flaking once a week, every other day, or as at the moment, every day or often all day long! Sometimes it will go through this cycle twice in a day! Snowing flakes constantly..
• Avoiding mirrors – You just don’t look like you any more. I avoided mirrors because I just hated how my face looked. So aged, saggy, leathery and old looking.
• Meditation – I try to start my day with my Daily Calm guided meditation, although I’ve not been as diligent in the last few months. Ten minutes to meditate, focus on breathing and set you up for the day. I do usually do one of these before I go to sleep to relax me.
• Morning bath – If my skin is particularly crusty, painful and flaky, I often started the day straight into the bath. Epsom salts, tea tree oil and a long soak, gently exfoliating skin flakes from my body and mostly from my face with my fingertips. When I was trying to work I would be trying to get up at 6am so I could have a bath, soak off the flakes, wash my hair (every day due to greasiness and flakes) then get to work by 8am. It was exhausting and in the end I had to give up work.
• Exercise – if you can, daily exercise has been the key for me. It could be just a walk but when I can I run. The sweat and focus and sheer effort, raising the heart rate and not thinking about how itchy I am for 30 mins or however long I could manage has really helped. I think sweating helps the body clear out toxins.
• Itching like crazy – the itching during TSW is intense. Its’ like nothing you will ever experience. It can go on all day and feel like it will never stop. Sometimes it has been so bad I can’t even make a meal or a cup of tea. It’s part of the healing process so I try not to beat myself up when I scratch or rub my skin. Ice packs can help.
• Herbal support – The first year of TSW I took a lot of supplements to try to help my skin, but since January I’ve been working with the Eczema Expert and taking herbal tinctures, Adrenal Support tincture, Alfalfa supplement and a Heal all tea. I have seen both a dramatic dip or healing crisis and also now some pretty promising healing. The body needs to learn how work again after years of being suppressed by the steroids. These tinctures work by encouraging the adrenals, lymph, digestive and other cleansing organs to spark back into life. It takes time to heal from topical steroid addiction but we can support out bodies as we do so. I’m planning a full blog on this when I have time.
• Reading – escape into a good book has kept me sane through all of this. I’ve also treated myself to Audible audio books and love to lose myself in a good read.
• Work – I’ve been so lucky. I was able to take four months off after completely burning myself out trying to keep my full time job going for the first three months. That was awful. Going into work with my hands, wrists and arms bandaged. My ankles oozing through my socks. Blood seeping through my work shirts. I don’t know how I did that now. I have been really fortunate also to have some really lovely clients who have stood by me and understood when I’ve been less responsive. Working from home has allowed me to work when I can and rest when it’s bad. I’m now really busy with work. Probably not 9-5, but keeping a steady work life balance whilst working on my blog and book, which comes out soon!
• Food and drink – I have tried to keep my diet simple and healthy. Where I can I’ve eaten lots of fruit, vegetables and raw too when I can. I cut out processed foods as much as possible and cut down on alcohol. Sugar isn’t great but I do have a sweet tooth so I’ve struggled with that. Food can definitely be a trigger for making my skin itchy. If you’re worried about this, keep a food, mood and symptoms diary and try to work it out. Some foods can cause inflammation in the skin but this isn’t the case for everyone. I also drink a lot of water, juice and herbal tea to keep hydrated. Fruit helps hydrate you too.
• Moisturise – I did moisturise my skin throughout and continue to do so. It’s up to you whether you try not moisturising or NMT but I found it too difficult. Dry skin for me means itchy skin so I’ve use emollients and natural skincare throughout. I am needing this less and less as I heal and am now trying to use more healthy natural skin care brands where I can.
• Love yourself – I’ve been working hard at gratitude journaling, positive affirmations and learning to love my skin. Living in a place of anger, jealousy, desperation and negativity won’t help healing. I’ve been there and sometimes it is impossible not to feel completely lost and in despair. But we know others have got through this. It takes time but it is much easier to do this journey with self love. So what if I don’t heal any more? What if this is me and my skin is like this? I’ve been learning to love what my body is doing to heal. It’s incredible to observe this horrendous process playing out. Who would imagine that some topical ointments could wreak so much havoc? I have so much less pain now I’m learning to just be, whatever my skin is like, to accept it and go with it. My quality of life now is really good so I could live with it if it stopped healing but I believe it will heal more. I hope it does!
• Bedtime routine – sleep is one of the hardest times. I’ve written about this extensively. Read Sleep remedies for eczema and TSW. I am quite strict about this and go to bed quite early to try to slowly wind down. it’s got easier. I can now stay awake till about 11pm but I used to be so tired in the early months I would fall asleep at 9pm only to wake at 11pm and not be able to sleep again till 6am. So frustrating! The blog above will give you loads of tips.
• Talk about it – Social media daily helps me so much, although sometimes it’s too much and I have to take a step back. I get so may messages from people and try to help when I can but it can be exhausting and painful to hear about so much suffering and feel helpless. On the whole though, seeing others who have healed and being able to help those at the beginning of their journeys keeps me going. It also helps to talk to friends and family. Tell them how you are doing, how you are coping. It will really make a a difference and they can’t help you if you don’t tell them you are struggling.
• Catalogue it – Finally, I am so glad that I kept a journal and took regular photographs. Seeing progress can be hard until you look back and see how bad it was before.

What’s hardest about TSW is the relentless nature of it. You can tell someone but you feel like you can’t keep on saying the same thing. It just goes on and on and on. It’s painful and it’s exhausting and we just have to do the best we can with as much positivity as we can. I am fortunate to have a great support network and some friends who have continued to check in, give me support and encouragement and let me know they love me. Thank you all of you. It really helps.

I do believe that working on my self esteem, self love and focusing on just being kind to myself have really helped me. I’m not always happy and I still have days when it’s so painful I want to cry, but guys, it gets easier.

Trust in the process. It takes time and the rewards are worth the effort.