I'm not even going to lie to you. For a good portion of your TSW, this is a living hell. And each day will feel like a week, so the entire process will feel like a life time when you're in it. Although I imagine once you are out of it, it won't seem like it was really all that long. I do know that I will look back and be so thankful I did it. But here you will constantly seriously question whether you should just give up and go back to the steroids. You will wonder every day when the heck is this going to be over. The thing is that your body will be healing so slowly that you wont even notice the changes taking place. I use the analogy of watching a child grow up. You don't really witness the moment it happens, but one day, they are grown up and you wonder how they got there so fast. And the days you get a break from the flares will be like a holiday in the maldives, that is until you are thrown back into the bowels of hell.
Even when your body is at it's worst, keep telling yourself that it is still in a better state of health then when you were using steroids. Remember to give yourself some solid credit for getting where you are and some lovin' words to sooth the soul.
There are 11 different types of eczema, and probably a thousand different triggers. As such, everyone's symptoms and experiences will vary. I would like to give you a cold hard look into my experiences and maybe try to raise some sympathy cards.. or just some awareness and appreciation for this disease and withdrawal process.. or whatever :-P
Totes cool If you can, aim your journey off steroids around the cooler months. There are several reasons for this. Your skin will look like your a dead person, so you will feel more comfortable when you can hide your skin and is obviously better with longer clothing in the cooler periods. Heat and humidity exacerbates the irritation of eczema. Even though skin can become drier and more cracked in cooler times, my personal preference is to have dry cracked skin over red and itchy. But if you live in a drier area then perhaps the summer sun isn't as uncomfortable. Although, if you happen to have gone through the moisturiser withdrawal process, you may not experience any cracking or dryness at all.
The 'feels' Your emotions will be thrown into disarray. This is firstly due to the fact that you are in a stressed state 24/7 with bleeding, infected skin, shedding and the itch that would wake your great grandmother from her grave and say 'heeeeelllll nooo'! The other reason is that steroids affect your endocrine glands (adrenal, hypothalmus, pancreas, pituatary, pineal, thyroid etc.) that make hormones. So when you have been using cortisone for long periods, and suddenly go cold turkey, all of these organs need to adjust to the change and repair any damage that was being done. This means hormone production, and subsequently your moods, will be effected. There are supplements you can take to help regulate your hormones, but I'm not sure how effective they will be during certain periods of the organs repair. I'm no doctor.
The bITCH The itch of a thousand mosquito bites! That's my best analogy thus far :) But imagine those bites happening simultaneously, all over your body, 24 hours a day. It's enough to make a sane man go cray cray! Now, there are two parts to this. One is the itch, that is self explanatory. The other is the prickling, needle stabbing sensation that often comes with it. They can be confused sometimes as the same thing, but they are indeed different. The itch is caused because sufferers of atopic dermatitis have a defective skin barrier. This more porous skin allows the penetration of microbes, viruses and allergens to penetrate the dermis which triggers the immune system creating an itch. When you scratch the itch, it allows further allergens into the body and there you have closed circuit system! Now, the pin prick feeling. Some people may never experience this, but I did quite often and it was horrible. It is thought to be a reaction of the nerves firing just under the skin due to them 'waking up', or another possibility is that it's the blood vessels under the skin healing after the damage the cortisone has caused.
The itch will intensify in length and severity and once it has reached its peak, it will usually stay there for a long time. The real challenge when you reach this stage is having the tools, emotional or otherwise, to keep going. Also, you may everywhere, even where there is no visible eczema. For example, my abdomen shows pretty clear skin however I find it incredibly itchy, sometimes itchier than the rash. I will scratch it until it oozes which is a whole new level of discomfort. If it were all rash and no itch, life would be apples. That's why I call it the bITCH.
Don't be so rash, rash With its tell tale patches of raised red skin and runny red abraisons or crusty flaking, its not fooling anyone! It will have you feeling ugly and far too freakish to leave the house. Plus I think my eczema has a personal vendetta against me as it seems to target the most visible areas of my body, and attacks these areas en masse!
I only used to have it on small areas when I was a child, now with the help of one, cortisol steroid, it's spread to every other part of my body. Head to toe. I don't know which area is worse as it's always changing but my scalp is definitely in the top 3. This is because I cant easily get to it with any soothing creams and as I scratch a lot, my scalp is covered in scabs and cuts. Then when it dries, the skin flakes are a constant contrast against my dark hair, and it's causing my hair to fall out. Overall, not a good look! Then there's the skin on my chest and arms which seem to become inflamed, red and itchy after I have had a bath or shower. The redness and itch seems to stay for a good hour before subsiding.
This rash, this disease, well it looks like a disease. There is no nice way to describe it simply, because its gross. It's bright red, very visible and as much as people want to believe they don't feel a bit grossed out by seeing it, they do. It's a natural reaction to have an aversion to disease so I have no judgement towards those who feel the repulsion. I do however, judge the action of those people who use this to taunt or bully people with eczema. That's just not cool, people.
Flakes anyone? Anyone? This is an epidemic. The cycle the eczema seems to follow is the skin first becomes red, it raises up and thickens, then dries up and flakes off to give way for a newer layer of skin. It constantly flakes, but during the proper flaking stage, I can only describe it as totally epic proportions.
I'll begin with the sleep flakes. Flakes don't sleep! So during sleep my skin cells still drop off and when they do, they harden and form a kind of sandy layer under my resting body. When I move I feel the rough and sharp sand on my already sensitised skin which wakes me continuously during the night and leads to many midnight bed sweeps. In the morning I wake up to a mass of skin cells around my bed and on my bedside table and still all through my sheets which means I have to either wash all bedding, vacuum the bedding or hang them in the sun to air out every day. It all depends whether the sun is out or not. The skin on my bedroom floor needs to be vacuumed daily, as well as the rest of the house as I shed a fine layer of skin everywhere I go. Which is gross and no one likes to feel like they're walking on crumbs ever where they go.
Morning is the best time to dry scrub as you have the most amount of built up dead skin still attached to you. So every morning I stand in the shower and dry scrub a further layer of loose flakes towards a welcoming drain hole. When I shower I use my hand to roll off more dead skin that the brush didn't get, just by rubbing the skin. Once I'm dry I would put on my necessary creams (I'm currently attempting the cessation of moisturiser so this step is momentarily void) then once the skin has dried again, more skin flakes present themselves and who am I to deny them their right of passage!? Time to have a good pick!
Then there's the skin that remains in my clothes until I undress at the end of the day. I am a bit weird when it comes to skin, I am a peeler. I like to peel, much to my partners disgust. So I cant say that this process hasn't provided me one guilty little pleasure :) Anyway, I am weird and I like to wear dark leggings and full length tops during the day to catch as much skin as possible and see how much I can empty out at the end of the day. My black leggings when turned inside out are essentially white with dead skin and comes out in plumes and boy do I empty them out triumphantly! The same goes for the tight tops I wear, however there seems to be more skin coming off my legs now more than the earlier stages.
The cycle of the skin thickening, then flaking off is all part of the process. When using topical steroids, the epidermal and dermal layers of the skin become significantly thinned out and weakened. During the period of topical steroid application, the keratinocytes (produces the bodies own inner steroids) are suppressed and so once steroid use has been withdrawn, the body goes through a period where it cannot produce its own inner steroids. Immediately, the epidermis becomes thickened and poorly differentiated. During this period, the skin can’t work as a normal healthy organ and may react to various stimuli which never used to be an issue, such as soaps, dander, and even water. I seemed to react to everything! The good thing is that this is only temporary.
Not so lovely. Not so lady. Lumps. My lymph nodes started to enlarge noticeably after I began taking Noni Juice, and concentrated around my groin, down my legs, around my neck and I can even feel them under my arm pits. The theory with Noni juice is it helps push toxins through your lymphatic system faster, and so enlarged lymph nodes are just a part of that process. It's probably just happenstance as enlarged lymph nodes are also a common side effect of withdrawal. They help detox the body of bacteria and replenish the blood with white blood cells, so they are just doing their job. I write this at 3.5 months and they are still very large but I 'think' they're beginning to shrink.
Miscellaneous lumps! These were completely unexpected. For the first 2 months of my withdrawal I had unusual lumps form under my skin, mainly concentrated around my shoulders and clavicle. Not to be confused with blind pimples or swollen lymph nodes, these were big solid lumps with no pain associated and took quite a few weeks for each to subside completely. The worst took about a month to dissipate back into whence it came. Another unusual thing about these particular lumps were the shapes. Some were just circular, but the others came up as long raised 'lines' under the skin. I took a few pictures of one, which not long after I took this picture another even longer lump appeared near it.
Pimples and styes. Infections are lumps too, right? They started happening around the same time and their occurrences disappeared around the same time. I assume they were caused by my itching and spreading of bacteria, but I have no idea why they stopped.
It's a bugs life The insects. Bet you couldn't have predicted this one! First insect in question is the humble ant. The great survivors and waste disposals of the earth. Such is their nature, they clean up and as I recently discovered they like to clean up dead skin! I noticed it one day when I was outside basking in some vitamin D, and as I was sitting there relaxing I was also scratching (I generally do) when I noticed one of the little critters struggling to walk away with one of my skin flakes. I realise this conversation is probably a bit gross, but hey, I'm giving it to you in cold hard truths! So anyway, ant after ant comes by to take away my spent skin cells until there was only skerricks remaining. How efficient, I thought. How green of them, I said. That was until I woke up a few days later to find them surrounding my bed feasting on my evenings sheddings! And then it was, how gross! They're going to bite me while my sleep. They must DIE! How quickly I turned on them. So after a few minutes of calming down I decided to leave them there to finish it off because quite frankly, any help at house work is always welcome :) When they were done they disappeared completely and I was left feeling like part of a special and kinda gross, circle of life. Humbling, isn't it.
*Ants - Addendum. Between the constant rain and their now valuable food source, they appeared to be making their home in my bedroom. When they started coming onto my bed for my skin flakes, that was the last straw. I tried every home remedy I could but they muscled through them. I'm sorry to say that I had no choice but to spray the sh*t out of them. RIP Mr Ants.
So now, the flies. Its not a big deal if its winter and not fly season, but if its a particularly warm and humid summer like the season I started my journey on, you will experience this. Ok so flies are attracted to rotting meat and its seems that in my case they were attracted to my eczema. I noticed any time there was a fly, it wouldn't leave me alone and if I had any exposed eczema, especially open weeping eczema, the fly or flies would be so drawn to it they would continuously dive bomb to get at it. I can only assume it is because the flesh is not healthy and so is giving off the scent of a unhealthy or dead animal, ripe for using as its buffet, or breeding ground. They are too fast to kill so I recommend covering up as much as possible if you notice this, at least until the skin is not so open and oozy. And lets not be fly haters here, they're just trying to survive, like everyone else.
Baldy :( I had read that people may experience hair loss but I honestly didn't think I would be a contender. I started losing my hair around 2 months into the withdrawal, only lightly at first but it progressively became worse. Now I can see my whole hair line has moved back and I notice really sparse patches all over my scalp. If I were working or more public then I would have a huge issue with it. But because I get to hibernate in all my ugliness anyway, I am not so bothered. It will grow back. It's amazing seeing the hair brush every time I run it over my hair. It's almost full each time! So sad :(( I assume it's falling out due to the scratching which causes breakage, the condition of the dermis is so bad that the folicle cannot support the base of the hair, and also due to stress. Just my assumption.
Funky cold Edema Edema is swelling associated with fluid. I didn't think I would get this as I have never really had an issue with fluid retention. However, when I ceased the cortisone on my face, two weeks in I began getting swelling under my eyes which is characteristic of edema. I am yet to find out how bad this will get but I have seen some shocking photos of people going through TSW and their eyes are ridiculously freaky. I hope my eyes don't get that bad, and I hope your eyes don't either! Although the idea of wearing my sun glasses everywhere seems kinda rad, if not, a bit douchy. I am a bit of a cool dude.