This photo was taken on 9th August 2021, two days before I used topical steroids for the last time, after using them regularly all my adult life. No one would know the extent of my burning skin under my clothes. I used steroids, as advised, like a sticking plaster to allow me to function on a day to day basis. Here is my photographic journey. Warning: some of these photos you may find disturbing.
17th August 2021 (Day 6) I messaged close family members to explain my decision to stop using topical steroids:
I am sending you this message because I know you care. As you know I have lived with chronic eczema my whole adult life. It impacts on all aspects of my day to day activity. It has always been described as extensive and is pretty unresponsive to treatment. With the support of Jude and the children we have learnt to manage to navigate family life by accepting it is a part of me. However, things are always changing and developing and we have been doing our own research and have come across something that we really believe may fit my history. It is highly possible that my skin condition is not eczema at all but a reactions to steroid addiction and therefore skin flare ups as a result of topical steroid withdrawal or TSW. I have decided to stop using steroids and go through the process of withdrawal. Whilst this is not understood by all medics it has recently been recognised in the UK as a genuine condition and is referenced by National Eczema Society and Royal College of Dermatology. This is like any other drug withdrawal and is likely to be tough but it will allow my skin to heal. It can take months to years to fully recover but recovery seems to be a certainty. I am telling you all this as I know there may be times I have to withdraw from social life and everyday situations. However, that is actually nothing new! But if I disappear or don't respond to messages you will know why. If you would like to know more about it we have a book you can borrow or I can send you a link to two videos. Just let me know. There is a lot of support on social media and I intend to use it. I am not sending this to get sympathy. I know you are already very understanding about my skin condition. However, I really wanted you to know. Xx
24th August 2021 (Day 13)
25th August 2021 (Day 14) - head shaved that day !
26th August 2021 (Day 15)
30th August 2021 (Day 19) Inflammation is becoming more extensive.
31st August 2021 (Day 20)
1st September 2021 (Day 21)
3rd September 2021 (Day 23) - I am now reliant on ice packs to cool the burn.
4th September 2021 (Day 24)
5th September 2021 (Day 25) I am needing a rotation of ice packs to help with the severe burning.
7th September 2021 (Day 27)
Jude messaged a TSW c0ntact:
He has everything you would expect. Burning, shedding, cracking, oozing, crusting, itching, swelling, nerve pains. We are a great team and deal with each symptom as it arrives. Ice packs are our biggest friend (I even made cotton jacket covers for them). Just as he thinks he may improve the next symptom hits again. All things he has had many times before that he used to suppress with topical steroids (or oral/injections). He is struggling mentally (self blame/loathe for scratching etc) but copes by trying to shut down. Baths help and often only place of comfort. He is trying to work (uni professor in medical education). Working from home but brain activity and thinking and remote meetings overload his system. We know withdrawal is the right thing but during the night I doubt myself. We will get there. We are strong. The kids (adults/teen) are amazing too. Just feel I need to share with others who get it. No-one really does outside of us and nor would I expect them to xxxx
9th September 2021 (Day 29)
10th September 2021 (Day 30)
12th September 2021 (Day 32)
13th September (Day 33) My first day of sick leave.
14th September 2021 (Day 34) A classic and well documented symptom of TSW is red sleeves. This is something that I have experienced for years and I have often wondered why. The red sleeves are a key diagnostic feature that made me realise I had been going through TSW, unknowingly, for a long time.
16th September 2021 (Day 36)
17th September 2021 (Day 37)
18th September 2021 (Day 38)
20th September 2021 (Day 40) Elephant skin: another manifestation of TSW. I have had this for years not knowing why.
21st September 2021 (Day 41) Stayed in a drawer since 11th August but now in the bin !
22nd September 2021 (Day 42) Hands are very swollen.
23rd September 2021 (Day 43) Night times are so painful, uncomfortable and disturbed.
24th September 2021 (Day 44) So dry and swollen.
25th September 2021 (Day 45) Skin raw and weeping. Have a wardrobe of cotton leggings and long sleeve tops I wear under everything. I can change my outfit 20 times a day due to oozing and bleeding.
27th September 2021 (47)
28th September 2021 (Day 48)
1st October 2021 (Day 51) Skin very angry and open wounds now.
3rd October 2021 (Day 53)
4th October 2021 (Day 54)
6th October 2021 (Day 56) Skin permanently on fire and a constant sweaty ooze. I am spending 70 % of my day in dead sea salt baths.
8th October 2021 (Day 58)
9th October 2021 (Day 59)
12th October 2021 (Day 62) Skin weeping/oozing extensively. Ears the worst. Especially disturbing as the ooze ran into my ears, blocking them.
17th October 2021 (Day 67) My eyes are a constant problem. Can be mistaken for infection but did clear with no treatment.
20th October 2021 (Day 70)
Jude Whatsapped her sister:
Finding it so hard today Gill. It's a tough one Jem is oozing from most parts of his body. Just breaks my heart seeing him like this 💔. But he has literally just said, "Jude I have been like this so many times before". Its not new it's just the relentlessness of it. In the past when he got this bad we didn't know it was the steroid and we would go the oral steroid route to 'get it under control'!! Often with hospitalisation. Not regretting that as we would never have got through our lives and achieved what we have in life if he hadn't done that. There is no other time in the last 30 years where he could have put himself through this. Not with career/young family/his mum etc Xx just feels better to text share. I am working through tears today xx
23rd October 2021 (Day 73)
25th October 2021 (Day 75) Condition is acute now. Taking each hour at a time .......
28th October 2021 (Day 78) I have been house bound. Leaving the house is very difficult. This day we tried to go out but we had to return.
31st October 2021 (Day 81) The oozing forms a crust and then the crust comes off. This is a cyclical process. The ooze/crust cycle presents like an infection making decisions about antibiotics difficult.
1st November 2021 (Day 82)
Jude Whatsapped my sister:
Ahhh Rose it's been a dreadful weekend😭 well esp Saturday in the night and yesterday. I have had to get all of the children to help me out. The responsibility for decisions is killing me. We have gone for antibiotics for Jem as we wonder if maybe it's infected. Sorry not to be positive but this is so so tough all round. Our children are just amazingly supportive. Tried so hard to stay strong and shield them but they now saw it all 😭 💔
Most nights I don't sleep all night as I am holding Jem's arms to stop him rubbing his face. If I do drop off that's when the damage is done. Lots of damage was done Saturday night. His skin is so delicate it bleeds and oozes at the slightest touch so his head was our very own Halloween scene 😱. I find it so gut wrenching to deal with. Jem struggling to find an inner strength. I can see he is scared. But we keep going, keep trying new strategies.
All the children were here for us yesterday. We tried a new strategy last night. I swaddled him in a big sheet. It worked. He is in the bath now ooze and blood free (for now) and I slept. Today is a new day 👍
3rd November 2021 (Day 84)
5th November 2021 (Day 86) Weeping skin is still extensive especially on face, legs, buttocks and hands. I found relief from calamine lotion, sudocrem and eventually viscopaste bandages. All required careful application. My care needs are intense.
6th November 2021 (Day 86)
7th November 2021 (Day 87)
8th November 2021 (Day 88) Frustration as crusty scabs are easily dislodged causing pain and further ooze and longer healing.
9th November 2021 (Day 89)
10th November 2021 (Day 90) It took every ounce of my energy to attend the GP Surgery for a blood test.
11th November 2021 (Day 91)
12th November 2021 (Day 92) I am still heavily reliant on dead sea salt baths having 7 or 8 a day.
18th November 2021 (Day 98) I have lost 2 stone. This has been a very difficult, painful and scary process. Thermoregulation is one of the most debilitating aspects of the withdrawal process. For many years I have not been able to regulate my temperature. I can feel icy cold and shiver on a sunny summer's day. I have rarely sweated. Now, my sweating is profuse and my skin feels damp from a sweaty ooze. It feels like my body is learning to regulate and learning to sweat.
19th November 2021 (Day 99)
25th November 2021 (Day 105) I received today a formal diagnosis of TSW from my Dermatologist. MASSIVE relief confirming what we knew.
27th November 2021 (Day 107) Hands are so painful.
28th November 2021 (Day 108) Still in significant pain but managed to get out for breakfast.
6th December 2021 (Day 117)
12th December 2021 (Day 123) We had a weekend away already booked. We were thrilled that I managed to make it to enjoy family time.
15th December 2021 (Day 126)
Jude messaged TSW contact:
Just a little update. I won't only text when we are at a desperate point. That just feels wrong! After 4 months of acute pain, fear and suffering (and tbh probably 4 decades of historical TSA/W) we can now see some improvement. Although Jem's hands and face are still anyone else's dreadful and the itch remains, much has changed. Thermo regulation more stable, continuous ooze and crust reduced to localised spots, sweats minimal, nerve pain gone.
Jem has gone from surviving each minute wondering how he can live anymore to being able to leave the house, go for walks and semi-function. As long as a bath isn't too far away!
I see normal soft skin appearing (with freckles!). I have never seen this in our 30 year relationship. It is really like a miracle where the healing has happened.
We know there is a long way to go. It is unlikely after 40 years of the most potent steroids and continual flare - never being without inflamed skin - that Jem will get away with only four months at the acute stage but we are so grateful for this wonderful change and hope.
I really do believe that Jem has never ever had eczema at all but was always in some state of TSW (this is where the derm and I disagree and only time will tell). Breaks my heart. No point looking back but looking forward to many years of skin freedom.
You will never know how much we owe you and other warriors for sharing your stories. You and Heba in particular have given us understanding and strength xx
18th December 2021 (Day 129) Improvement. Red sleeves fading. Not sure if it will last.
27th December (Day 138) Still a way to go.
30th December 2021 (Day 141)
31st December 2021 (Day 142)
The next part of my journey in 2022 will follow soon.