#cuddlyclaws

Drying out

This is the backwards approach that seems to be helping my skin significantly. As you know from reading the other posts, I treat myself like my own little test subject. Tweaking here or there, trialling this or that. Be it diets, lotions and potions, mitts, different regimes or theories. I am giving it a go.

The latest idea to cross my brain was from an observation, as many good experiments start. I noticed my poor old neglected legs were the best large skin area on my body. They receive no special treatment, in fact, no treatment at all.  No moisturiser, no steroid creams, no natural ointments or lotions. At times they look a little dry and get a light coat of a light moisturiser but that maybe once a week at most. 

Regarding the rest of my body, my arms have been having weird spots like a staph infection, my forehead the same except these end up needing to be popped. My forehead was red and dry with flaky patches around the temples, above my eyebrow and along the hairline and a spot of rubbing damage on my cheek was particularly bad. My torso and upper arms appeared a little dry yet undamaged, despite the occasional rash on my chest. It had been this way for some time.

Historically, these areas were bathed in moisturisers multiple times per day, trying to keep the skin looking presentable, stop it drying out and to hopefully help it heal. This involved medium and greasy moisturisers, natural ointments being applied regularly and steroid creams occasionally.

My thought came to me, that maybe, I am turning my forehead into a personal Petrie dish. Warm, moist and perfect for growing bacteria. Also, am I confusing the body with the overindulgent application of moisturisers, to the point that my skin feels it is already oily and saturated, and so does not produce any more naturally.

Either way, the plan was to slowly pull back on applying these greasy moisturisers to my sensitive face, neck and chest. Instead, I would apply a light moisturiser only to all areas, just enough to stop the initial feeling of dryness. A light coat after the shower or bath for all but the legs and forearms and that was it. Normally I would lather up and put heaps on to “soak in”, which it often did over 2-10 min. I would apply a little more in places I thought might crack due to the dryness and damage later, but only sparingly. 

Mentally this was tough at times, especially in relation to my face. I have worked hard my whole life to hide my eczema. To try to fake like i had “normal” skin. The face is such a visible area of skin and a focus for most attention. I deliberately went through a period of allowing my face (particularly forehead) of flaking off the old damage as it healed over about a 2 week period. Normally I would have lathered it up to hide the dry flakes. A couple of places, right temple, above my right eyebrow and on my right cheek, felt like they were going to crack and then require more healing so go the occasional light touch up or thin application of a greasier ointment. I was careful to only apply where I thought not doing it may result in worse damage. 

The first to improve was my forearms. Joining my legs in becoming resilient to the world without moisturiser. Then my torso, upper arms and back started to come right. Fewer spots, less rash, and skin appeared to be holding its own. Where there was damage such as scratches, the area felt dry and even itchier. I would apply the minimum I thought I could get away with and only to the scratch or rubbed area itself, not the surrounding skin. Eventually, these healed up as well and joined the resilient party.

At this point, it has been about 3 weeks and just my face and neck that now show signs of eczema and dry skin. The spots have all but gone. As they healed and receded, they left a damaged layer of skin on top that eventually peeled off like a sunburn. It was hard mentally not to lather up or scratch this area as it healed, but worth it when it finished healing and the dry damaged skin has fallen off. By my right temple still appears a little leathery, and I get the odd dry spot, especially on my forehead from last bits or new little bits of damage. I resist lathering up and overreacting with greasy creams or ointments, and this looks to be working. Without wanting to put the mockers on me, this has been the most stable and treatment minimal period of my skin in over two years. I still have the occasional bleach bath, I still bath with lukewarm water and gently pat down with a flannel or hand towel only to leave the skin moist and ready for a quick moisturising. This helps prevent drying out between the bathroom and bedroom where I moisturise.

I have tried an approach like this before but it failed. I went too far to fast and it backfired on me. Overnight, I completely stopped all moisturisers, lotions and potions to all areas. This resulted in dry, itchy skin over large areas of my body. Damaged skin areas cracked and so took longer to heal and were more vulnerable to further damage. These cracked areas cried out to be scratched and eventually, they got it. This resulted in an ever-descending spiral of itchiness and scratching, creating more damage, itchiness and scratching. And so it went on.

This time, the weening off was slower. I slowly reduced the moisturiser to the undamaged skin, down to a time amount lightly brushed over to prevent dryness until the skins natural oils took over over the space of a week. I allowed the feeling of my skin to dictate the speed and how little I could get away with.  The healing and skin flaking was allowed to continue naturally. This was hard given I had just started a new job, but it was important to me to get through it. Gradually the damaged areas requiring a little more attention healed, flacked off and reduced. Now there are days I don't even moisturise except for my face. 

I am slowly working on my face joining the rest of my skin but there are some stubborn damage patches that appear to boil up from underneath. The problem for my skin from scratching outweighs the issues from moisturising, so I moisturise if I need to stop scratching, but I don't drown my skin. I am prepared to put many light coats on if needed instead. So far this has not been required nearly as often as I thought. 

I need to make sure I still try to stop scratching and doing damage to my skin. This is easier as my skin is not as soft and there my skin is in a clearer condition. Ice packs and a little moisturiser or an antihistamine instead. I also need to make sure I continue to wear my mitts to bed regularly to stop any nighttime damage. Again, these are more effective because my skin is more resilient. 

Stop scratching they say. Didn't even know I was. 

A change in perspective

It has taken some time, too long in fact. With the improvement in my skin, a heavy fog is lifting in my mind. Dark clouds are parting and some rays are coming through etc etc.

For far too long I have seen myself as a victim to my skin. This moment of clarity may not last but I certainly hope it does. I hope that when my skin dips into another flare it does not derail this new direction. I must remember there is an up, a sun above the clouds. I can wait for them to part or rise above them.

Something has caused my skin to flare. I have been running around in the weeds looking for it. Strangely enough, the collision of my latest flare up and the more open approach to dealing with it has been a big part of the mental turnaround. This has been parallel with the physical improvements. Add in the inspiration I received from the airy-fairy doctor's visit that took me back to what I knew from my past when my skin was poor. This all has a familiar retro feel. It has a strangely comforting vibe that takes me back to being a child. Funky diets and food elimination. I hope it is not grasping at straws. 

Maybe I am a person with an eating disorder, selectively choosing to avoid foods to create a feeling of control. To gain or create a handle on which to grapple back my clear skin.

I prefer to see it as an adventure. A chance to broaden my horizons. To break out of the status quo. As Einstein apparently said, “insanity is doing the same thing over and over again and expecting different results". I genuinely believe the body is the best tool to be able to fix itself. Yes, the body needs help from time to time from medicine to jumpstart past a hurdle or to hold up a corner. 

I am on a mission to give my body the opportunity to stabilise. To fill it up with ample good stuff and eliminate any things that may make it wobble. The airy-fairy doctor said gluten, dairy and refined sugar may be candidates for intolerance. Big picture, what is the harm in removing these ingredients and seeing what happens. I know that I am allergic to nuts already. That one is clear. I also know that I used to be allergic to dairy, so why not during times of instability and heightened immune response that it becomes problematic again. Sugar is my weakness, my nemesis. This will be my Achilles heel. 

I lie, gluten will be. I love my pasta and bread. I could have just eaten these two and been happy. Very little is as welcoming and delicious as a freshly baked loaf of bread. Esp with cheese and bacon on top or through it. Yum.

We went out last night and bought a Nutribullet blender so Millie and I could have smoothies. What a cool concept. Never really had smoothies before because I always associated it with dairy. How wrong I was. 

I have made a couple of smoothies. They were not great but certainly edible. A lot of playing to come yet I think. A great way to pack in heaps of fibre, vitamins, fruits and veges. I also have a slightly different pallet of foods to build meals from but it is not difficult. I think it will just involve being a bit more organised. It will also encourage more diversity in the dinners we eat. I think it will involve more thought and pride when it comes to cooking. 

At this early stage, it looks like it will be a journey back to whole foods; meat, veges and salads. I personally think I will just avoid those problem foods rather than looking for gluten, dairy and sugar alternatives. I am cool with that. The difficulties will be when I am out and about and length of time to prepare. Will have to work on that one.

I can’t afford to have eczema

It has been a bottomless pit of money fighting this 2.5 year flare up. It hurts to hink about how much we have spent and it scares me to add up the big boulders. There is no way to capture the 5 or so different laundry powders, multiple different shampoos, moisturisers, bath additives, special foods and diets, Nutribullet to make breakfast smoothies to increase flaxseed, fruits, vitamins and fibre plus many more tests and trials along the way.

I will work out just the last 6 months in Dermatologist, GP, Alternative Treatment, medications and treatments.

2 x Dermatologist appointments ($215 + $185) = $400

3 x GP visits (3 x $49) = $147

2 x Alternative Health treatments ($160 + $80) = $240 

Prescriptions = $120

Probiotics = $95

Light treatments (12 x $60) = $720

So far 12 light treatments in and we are only now reaching 2 min per treatment and apparently a “therapeutic level”, so many more to come.

All in all, these costs do not take into account the special diets, fuel and time off work to attend appointments, natural ointments and moisturiser trials and so many small ideas and experiments. By far the biggest cost has been psychological and emotional. The ups and downs, the victories and flare-ups. I am certainly miles better than I have been for a long time. I would say 90% on average. I am incredibly grateful to my lovely wife for all of her support throughout. 

Light Therapy - UVB

It has been a day since my first session. 40 seconds of being rotisseried in a cabinet of special fluro tubes. They start the initial duration low to allow the skin to adjust over time to the treatments.

I walked into a small room at the doctors office, about the size of a disabled toilet. There was a curtain and then behind this a weird metal cabinet about the size of a large telephone box (for those that remember what they looked like). It reminded me of something that would have been designed during the ‘60′s as part of the space programme. It’s name is Daavlin but really sounds like it needs some numbers after it, like a Daavlin5000. Even more so as it talks to you. The front doors both swing open to reveal all the walls, including the doors full of vertical fluorescent tubes. 

It is just like a standing sun bed thingee which is what makes me a little nervous about this treatment. Haven’t sunbeds been given a terrible time. Driven off the face of the earth for being the latest thing to give you cancer. Given my current situation with my wife battling cancer, this is not something I am keen on.

I know my skin improves after being in the sun so there may be some merit to this. Plus my father in law swears by it for treating his psoriasis.

Before I start, I am advised I will need to strip down, either nude or boxers. I chose boxers. But then I was advised to make sure that my boxers are consistent, as you build up a tolerance as the exposure gets longer and you don’t want any fresh white skin being exposed because I am wearing different length boxers. 

I put on little sunbed goggles and jump in. Soon after the nurse walks in and pushes a few buttons. Daavlin5000 starts talking to me to tell me how long the exposure is and a countdown to start. Then the lights flicker into life and it gets mildly warm. A couple of bulbs are out so I spin around to rotisserie properly. 

Pretty quick and straightforward. All done and dressed again. Payed for the session and out in less than 15 min.

Later in the day my skin felt a little tight like I had been in the sun or wind. Millie commented that she could see little goggle marks. Today is the day after and apparently my legs are a little red. Looks like I may have a tan for summer.

I am not sure if it is related to the light therapy but I am very scratchy today. My face is quite red, raised and blotchy. I had a really poor night’s sleep a couple of nights ago so this may be also be it. It could be the volume of kiwifruit I ate yesterday. Could be the probiotic. Who knows. The wonderful world of eczema.

An update re Millie, they are trialling some new meds but things look pretty settled. Millie has been given a pass out of hospital to come along to an awards evening in which CuddlyClaws has been chosen as a finalist. This is great news as Millie is a massive part of our progress and achievements. It will be interesting to see how her body copes with being out and about.

Don't make me Angry, you wouldn't like me when I'm Angry!

I believe the emotional side of a flare up is dramatically underappreciated by people who do not have a skin condition. The emotional and psychological toll can be the biggest problem overall I believe. It can unfortunately also create a downward spiral, I feel rubbish because my skin is no good and my skin gets worse because my mood is down and so it continues. Exacerbated by guilty pleasure eating to make yourself feel better that is generally fatty, processed or sugary food. THis again makes the situation worse and on it goes.

This green photo above is me underwater in a bath with the green Pinetarsol, trying to calm my red itchy skin. Life just seems harder when there is a flare up. GIven the down mood, I can go into during these times, I tend to also become a self-fulfilling prophecy. I see the bad stuff around me and that just reinforces my perception. It can kill confidence, motivation, engagement and joy. Contact with other people can wither away as you hide in your little hole of self-pity and frustration. If I have to go out and I have a flare up I tend to hide under a cap. It is a great place to hide for me, esp because an am short and people angle down to my sore face is blocked by the brim.