Everyone that has any type of lupus has something troubling their skin. There is even a skin-specific type of lupus. In my past I have had a few nasty run-ins with lupus and my skin. As well as the common butterfly rash and photo-sensitivity,  I developed Erythema Multiforme and this new…skin…thing. Last week I began by introducing this skin irritation to you as it evolved for me. I shared the extent to which it encroached into my life and how I had tried to get around it. The second part of the story is much more enticing for me to share. It includes experimentation, exploration and documentation. Just so you know I did not just get this issue and expect someone else to solve it. It is important to me that you see how deeply I investigated this issue. Not just for my personal validation, but also to show you that as patients of chronic illnesses, we have a right to take part in the diagnosis and treatment. As a spoonie I am not just accepting what a doctor tells me, and I am not waiting idly for a medical assessment or medications. My investigation was so I can honestly tell the doctor I have all the information from my side and I have tried everything I could.

Each and every washing situation was recorded

It began to become clear that I needed to know what was happening and what, if anything, was setting these episodes off. On a daily basis I began to note: the temperature of my body, outside, inside, inside bathroom (if needed), water, length of cleaning, what was in the room, how long it had been since my last wash and wash vessel clean, how often I had worn the clothes I attempted to put on how soon after a cleaning the itch happened, days of the month, where in my menstrual cycle I was and the diet of the last 72 hours prior to wash. I am sure there are a few places I have missed in the recollection but overall, let me just say I was serious and thorough. There was no way I was going to let these three years of torture go unnoticed. The other notable point is I may be making it sound like this itch began after a shower but that is wrong. They came on at any point of the day, in any clothes and weather, regardless of how dry, windless, ‘fine’ and cloudy the day was. Also it started to become an issue that I was able to successfully ignore…at times.

Was there any reprieve?

Over time I realised ice baths worked. Any time that I was game enough to wade into ice water I could relieve my skin, hence so many Instagram images of me in the pool. I have been through nothing more demoralising than immersing my naked body in a pool of 2⁰C for 2 hours in the rain. The only trouble with this was determining if it was limiting the blood flow, numbing my nerves or immersing my nerve with water that caused the relief. I found there are some antihistamines that work more on skin allergies, and they helped to a point. It was agreed by all that I could not function if this trouble existed. While this issue was going on, please don’t mistake me for a person who was not telling anyone about my sufferings. Explaining this itch felt futile because how do you convey there was a phantom skin irritation that could escalate me from a sane and rational adult to a hysterical mess within 5 minutes?

Progress

Late in 2017, possibly in November, the issue was addressed head on in an obvious and direct way. I had an appointment with my GP, Dr Evs. In the waiting room the itch began. Unarmed, without the antihistamines or sedatives present I had to sit in this room quietly trying not to cry or itch noticeably. Dr Evs was horrified, I could not talk, and she immediately booked me into an angel of a Dermatologist, Dr Curt. Five minutes with him and he thought he had an answer. My skin was a dry lake bed. The outer layers are flaking on a minuscule level, exposing the nerve endings in the cracks. I no longer create my own body oils. He gave me two treatments to trial, one on each side of my body.

And now?

Both worked! Now I shower daily! I apply the ickier ointment all over once a week and travel EVERYWHERE with the other ointment. Every day I must moisturise my limbs with chemist grade creams. There are severe restrictions on the things I can do. No longer am I allowed to swim in pools or oceans. Spas and saunas are also off limits. I am advised not to walk near coasts or places that might have sand or salt in the wind. Of course, sun exposure is a mega no-no but so is interiors using air conditioning to heat and cool the atmosphere. The worst fact is that I am not able to go to tropical locations. You know, those places that are muggy and make you sweat, so you want a shower and a swim. If I have a choice between Paris and Fiji, I must always choose Paris. Technically speaking, even the climate of the more northern part of Australia would be off limits.

But hey, I can shower now everyday or whenever I want. And I just cannot express just how great that feels.

Next week I will write specifically about what this new ailment is in my life, how it works and what impact it has on me.