This morning is an unusual tuesday morning. I woke up at about 9am and scratched a bit, was a bit itchy you see and I wasn’t entirely sure what was happening but it was strange. This scenario may not seem strange to many people but to me I felt delirious.

I walked downstairs and picked up my daughters: Ashley who is 1 and Sophie who is about 10 weeks old. I cuddled them for the best part of an hour. My wife had already taken my son to school by then. My wife says she is going to take the girlies to the parents in law for a couple of hours while I have a bath.

I made some breakfast and done a little washing. Washed up my stuff from breakfast and went to put the washing out on the line. I then come back in and sit down to write this post. Possibly the most important one I have ever made since I started this blog.

Rewind to day 219.

This morning is a typical tueday morning. I woke up at about 2am and scratched myself until I’m bleeding and weeping ooze from head to toe. The flare has been ramping up since sunday evening so I somehow consider myself lucky it has gone this far without fully erupting. I then wonder how I can consider any of this lucky.

I go downstairs and sit there for half an hour before reluctantly applying protopic to my body from head to toe. Contemplate ending it all again and decide that would be a selfish thing to do. I log into world of warcraft and do random things while waiting for the burning pain to arrive which it promptly does about 2 hours later. The ‘protopic itch’ arrives at about the third hour which makes it all worse; you see the pressure from the itching causes the painful burning sensation to return tenfold and last for hours. I take prescription strength co-codamol and some ibuprofen to dull the pain and swelling which I do every 4-6 hours all day. It works somewhat. I try to remind myself that the alternative to applying protopic would be worse.

7am rolls around and my family wake up for the day. My wife comes downstairs with the girls and my son in tow and says good morning. My daughter Ashley cries for about 20 minutes because I won’t pick her up and give her a cuddle as I am covered in protopic. She gives me that “you don’t love me anymore?” look and crawls off to the front room to be with her brother and sister. My wife takes my son to school and I put Ashley in her standing car frame thing, both because she likes it and it stops her crying.

I sit in front of the computer all day and re apply protopic about 2pm. The burning and pill popping round-a-bout begins again until about 7pm. I now feel miserable and lonely as my children go to bed.

I sit in front of the computer until about 2-3am before going to bed. I lay there in pain with the burning sensation eating away at whatever part of my body is in contact with the mattress. I eventually fall asleep at about 6am.

This is basically my average day cycle between sunday night through to thursday. Add in the fact that sometimes I don’t sleep for 3-4 days in a row; not to mention random shiftwork in there too. Fun.

The difference a week makes can be so large.

It seems the azathioprine has finally kicked in after 3 weeks. I simply cannot believe the difference. I am slightly pink because the effect is not entirely there yet (takes up to 8 weeks in total) and it itches alot but I don’t weep/ooze and I stop scratching before I turn my skin into a bloody/weepy pulp. In fact I am realising alot of my scratching is habitual; so I’m trying to stop myself doing it.

I wonder if the flaring will return. If I don’t pick up another tube of protopic for the rest of my life I won’t be sorry.

Protopic is a deal with the devil. You trade pain and discomfort for burning and misery. I am not sure which is worse. However financially I havn’t had a choice to make. Protopic allows me to function at a very basic level and go to work. Thats all it does.

More importantly Today has given me hope. Hope is something I have not had for a very very long time. In fact last week I was contemplating asking for steroids back because this whole nightmare has taken almost everything from me. Its had a detrimental effect on my marriage, my children havn’t known who I am for the longest time because quite frankly I cannot remember the last time I smiled without having to force myself. I have not been to the gym for the best part of 9 months. My work aspirations have basically gone. My dignity is gone. I have had more people look at my bulging lymph nodes in my groin than I care to talk about. I have had two biopsies, one with which I had 3-4 lymph nodes taken for biopsy because the consultant was sure that nobody could have all those irregular sized nodes and not have some sort of festering cancer. I will live the rest of my life with a swollen right thigh because of that. It has taken my soul in that I used to be happy all the time.

I have always taken nothing for granted and enjoyed my life because I have looked after people in the worst of situations. I worked in a cancer centre and saw and experienced things that most people cannot contemplate. Experiences that I do not talk about but have given me the realisation that life is precious. A year ago people used to enjoy being around me and now? All I sense is people going through the mill.

All I have done for the past year is eat, wait, wonder when I will get cancer and die. Truthfully it never crossed my mind that this misery would ever end.

But I have hope now. I can see the end. My consultant says I should stay on azathioprine for 18 months to 2 years. I hope by the end of it TSW will be over and done with.

So I have been on azathioprine (consultant decided that was better than the mycophenalate tablets) tablets for a week and a half now. I also have elidel as a short term replacement for protopic until the azathioprine kicks in.

Sadly its not going so well. I had to use protopic last week because my entire skin broke down in a disgusting soppy weeping mess with the elidel not appearing to do anything. Trying again this week. Just got my flare and have applied elidel twice so far. I’m unsure if its working and tbh I am at the point where I dont care anymore. This shit is all too much now after this long.

The consultant believes I won’t need either protopic or anything like that when the azathioprine ‘kicks in’ which could be anywhere up to two months. Quite frankly after 7 months of constant pain, swelling, weeping and suffering I just don’t care to hope anymore. I’m seriously beginning to question whether or not this whole thing is TSW. People with TSW get better over time and I simply don’t. I try and kid myself but the reality is I’m still in the same world of crap I was 7 months ago.

For the first time in 7 months I considered going and getting some steroid creams last week. Just for a break from this crap. People who are new to this are probably reading this thinking “well, after 7 months how could you just give up?”; well: I am tired.

Because this isn’t just about skin its about everything. I cannot remember the last time I felt good about myself. I listen to myself: a person that earned the nickname “pillsbury doughboy” (google him if you don’t know who that is) when I worked in the royal mail; as a super happy smiley person. That’s all gone. I can’t go to the gym anymore, I had to give up my martial art. Taking my son to the park is an effort now and its pathetic. All I do is tend to my revolting skin, eat and consider what it would be like to have normal skin.

I worry because this affects my marriage and how my children see me. I fear that this will never go away; that my wife wil grow to resent me more and more as time goes by and that my children will see me as some sort of sick freak thats kept behind closed curtains that curtails my wifes quality of life.

I am married to a wonderful woman who talked me out of getting steroid creams last week and thats the only reason quite honestly. She mentioned that hopefully within the next 6 weeks of these tablets it should all improve like the consultant says, and that I won’t have to live like this anymore. Like some sort of disadvantageously diseased animal.

We shall see I guess. I doubt I have ever felt so low in my life. I hope everyone is faring a bit better than I am. ❤

So I went to see my dermotologist today and found out he had retired in the 3 months since I last saw him, oh well.

So after finding out that I have a new consultant I went in to see her instead.

We spoke about everything thats happened and told her that my skin is going from strength to strength since quitting the steroids back in March. We go through everything thats happened to me in the past 6 months (or just under) since quitting them. All the tests and wotnot. I end with explaining that a bad day today is comparable to a good day when I started steroid withdrawl. So I’m sitting there thinking everything is hunky dory when she asks me to take off my clothes so she can have a look at how my skin is.

She looks me over and I get redressed again. She absolutely stuns me by putting out a statement that literally made me want to break down and cry. All she said was:

“You know it never ceases to amaze me how people with terrible skin issues rationalise thier situation. I mean look at your skin; if it were my skin I would consider it appauling.”

I started to argue and reiterate that when my skin is having a bad day its only as bad as a good day was several months ago and wotnot. So she went on to say:

“Yes that may be the case. But compare that to a normal persons skin. Look at it”

And there was I, sitting in this office where half an hour earlier I figured I was onto a good thing. My skin doesn’t depress me to the point where I consider ending it all any more etc.

But it dawns on me. I look down at my skin and really see whats there for the first time in months. Cracked, red weeping hands and a red arm with lesions all over it from the itching fit I had this morning. The great red mounts of swollen skin across my torso, legs and shoulders. It goes on. I start thinking about how protopic ‘works’ by me sitting in a chair at the computer several days each week too worried about the side effects to go near my children. How I get the flare each week regardless of what I do and how I live in constant depressive terror fearing its arrival.

Also due to protopic I avoid sunlight now and basically live like a vampire. Literally when my skin on my face is clear I have the same tone as Edward Cullen, except without the sparkle. I have always loved being in the sun.

All this flows through my mind in a moment. Its horrid. But its true.

So I ask her what the alternative is. I tell her I will in no way ever use steroids again. She suggests a drug called mycophenolate which is similar to cyclosporine (which I tried briefly before and it made me feel deathly ill). I explain the issue I had with cyclosporine I ask her why not just continue with the protopic? and she says in a round about way that it really isn’t working. While I considered arguing that for half the week I am in the realm of normal….I realised I am arguing for a drug that is helping but hindering alot at the same time. It felt pathetic to do so when the reality of it is I have probably spent 4 out of the last 6 months of my waking life sitting in front of a computer waiting for the protopic to go in.

The realisation that you rationalise (lie) to yourself so heartedly that you see what you want to see is quite a humbling experience. It really enlightens ones self to how strong your self imposed beliefs can be.

Anyway so thats whats happening. I am to have blood tests before the drug starts and I go back in 3 weeks to begin. At which point the plan is to start on the mycophenolate and I assume stop the protopic at the same time. Several weeks after I will then be having UV light treatment to see if that helps aswell. Also on the dietry front the doctor thought my current setup was difficult so going for another allergy blood test to see if theres a more accurate result this time. When I had a test done before beginning TSW it basically said allergic to the world, but especially gluten. Thats all I had to work with. So hopefully I can enjoy some different foods that I have been missing so much.

So in essence today was a wake up. I might continue the blog, but it won’t be about protopic for much longer.

Found this picture on google. Really demonstrates what happens in my mind every day with regards to TSW.

So here I am 5 months and 18 days into TSW. Still using protopic; still flaring every 5-8 days or so; still not healed – Of course – I really don’t like reminding myself that this will take 12-18 months on average. According to the ITSAN forums.

However in the past month there have been large improvements.

A flare day now is a good day 3 months ago. Thats a pretty large statement and I am being serious: it still weeps. It still requires protopic to get rid of it or it just feels horribly uncomfortable and it still eats up a large portion of my life. However it isn’t anywhere near as red or enflamed as when I started. Flares also last for about 24 hours, which is a dramatic improvement to 5 months and 17 days ago when I stopped topical steroids. A flare back then was really not a flare; it was a lifestyle. I was red 24/7 in massive pain and discomfort; I would sometimes go 3-4 days without any sleep before eventually my body would pull the plug and I would have to sleep. Its hard to believe that lasted 2 months….they were very dark days indeed.

But my fellow sufferers as boring and repetative as it sounds. As awfully strangely sickening as it reads; as I read a thousand times when I started: Things do get better.

I now still get my weekly flare up and have to put protopic on to get rid, as I said before. However I am putting protopic on 1-4 times a week now. I have some life and even though I have days where I cannot go near my children (ones where I have to apply protopic twice) it has turned on its head and I now get over half my life where to look at me you would’nt know there was anything wrong with me.

The big change: I have found wearing full sun block on exposed areas before I go out regardless of the weather and trying to avoid sun exposure even when I have it on. I have found the sun was causing the redness. The flares are red where I scratch now but generally anywhere else and they are not as swollen as they used to be. I don’t know if this sun sensitivity is from the protopic or not but I am inclined to think it might be a problem with my skin, as when I think back to pre TSW some of my worst flares were after a lengthy time in the sun such as a day out at the beach or what have you.

I also (as icky as it sounds) do not wash areas that don’t ‘need’ to be washed. I have found if my skin gets wet it seems to not like it. The areas that ‘need’ to be washed such as armpits and nether regions, have oddly never been affected by TSW anyway, so they don’t seem bothered by washing. Also it should be noted that since I stopped washing I don’t weep as much during a flare and the weep is actually clear rather than yellow in colour. I don’t know what this means but it certainly feels better overall even though I don’t like feeling like I havn’t washed.

In comparison having 3 children and a job in care work my hands get washed all the time and happen to be my worst area. They are moisturised but cracked and red all the time due to swelling and pompholyx that rise up, pop and leave cracks.

My skin used to get all its moisture from the bath/washing but it seems to want to be dry. Even though I use moisturising cream I use very little of it because if I use too much my skin becomes irritated. The moisturiser I use is called epaderm which is more oily than aqua based anyway. Sometimes even the thinnest application of moisturiser sets off a scratching spree and my skin isn’t happy until I have scratched it all off. Might see if I can change to something pure grease based soon and see if that helps.

As far as skin integrity goes my skin is vastly improved. It no longer tears from scratching like it used to. It’s holding and generating moisture far better (not anything like normal skin, but some moisture is 100% better than what I started with). My striations are leaving! Theres still striations but alot of the smaller ones on my arms have grown over completely and some of the worst ones on my tummy are completely gone other than a white outline. The really deep striations on my inner elbows are thickening up and starting to vanish by the process of building tiny ‘islands’ which slowly over time combine to full out the striation.

My legs seem to be the worst place other than my hands. I get millions of spots on my legs constantly (good or bad sign?) and they are often red sleeved altho this comes and goes and I have had periods where they don’t red sleeve for weeks.

Overall things are looking up. Its still hell and I despise it. Every week I try not to build my hopes up but continue to do so anyway by praying that this is the week I won’t get the flare.

Sorry its been so long since I posted. I had an operation to have some large grape sized lymph nodes out and tested for nasty things (like cancer). Today I finally got a response that all my swollen lymph nodes are basically due to inflammation. So basically down to TSW.

I really havn’t felt like posting tbh. Because all I would do is moan that life isn’t fair and that I worry day and night about these results.

Also my wife is due to give birth any day now! So life has been tiring in general with the two sprogs we already have.

Anyhoo so now all I have to deal with is TSW. I have been taking ibuprofen which has helped immeasurably! In the past 3 weeks I have had only one flare, which while bad only lasted 4 days. Thats pretty significant improvement I reckon.

I had to use protopic during those flare days. I put it on a total of 5 times over 3 days and just let the rest of the flare go away on its own on the fourth day. Long may the clear skin continue.

Now almost 4 and a half months in. It seems like a lifetime ago that I started down this path. My skin is improving gradually; the flares occur with greater time span between them and last slightly less time, each time. I look forward to the day when I don’t get any flares at all. Oh how I long for that.

I hope everyones been having a less stressful time than I have recently. Oh well heres to the future and good health ❤

So here I am four months in. A whole four months without topical steroids already. It seems crazy.

And what a shit ride its been! constant discomfort and emotional stresses like depression and anger. I would recommend TSW to all my emo friends, had I got any.

Anyhoo so four months has arrived and this means taking stock of the situation; with minimal input from protopic over the last couple weeks and using ibuprofen my flares now are like good days in month one. Its incredible when I think back in fear (and I still constantly catch myself thinking about it) about month one. I had periods where even using protopic heavily I would get 3-4 days or sometimes more with no sleep due to my skin being an absolute disgusting weeping/oozing/smelly mess.

In four months I have come a long way. Not only are the flare noticably less intense in nature but I am also able to sweat – and I do, profusely – which I havn’t been able to do for years. My thin steroid ‘striations’ that I have on my tummy/upper legs and arms are reducing in size and some are just an outline of their former selves. My striations don’t tear like they used to upon the slightest knock. My skin also does not bruise at the slightest harder than a feather touch. My skin also retains moisture and is creating oils of its own for the first time since I can remember. It is still dependant on moisturisers every day for complete comfort but I have been able to go three to four successive days at points where I have had to; out of time contraints been unable to put moisturiser on. I also only have to moisturise once a day and probably use a 10th of the amount I had to use every 4-5 hours to keep things supple when I was on steroids.

I have a long way to go. But the improvements in four months have been outstanding.

So I continue to take ibuprofen due to this lovely operation swelling I have (its also nicely infected, and I’m on antibiotics now) and its still helping my skin.

I mean I wish I could take pics, ill hopefully post some later when I manage to nab my missus’ phone to do it.

The skin basically feels like it does in between flares. Its not totally clear, aside from on my face and back. I have like small pimples all over but it is not noticable; It doesn’t itch and it doesn’t weep and when I scratch for example (mostly out of habit) the red sleeve area of my arm. After a couple of hours the redness fixes itself and goes back to my normal skin colour.

Its so nice not to have to put protopic on, more than anything else. I can sleep, I can eat without worrying that the protopic is on my hands, I dont have to worry about protopic transfer to my family either. And I’m comfortable to boot! cant be bad.

So I have been in hospital. TSW causes enraged lymph nodes but my doctor wants to be sure it isn’t sinister in nature; which I am very thankful for.

I had several lymph nodes out for testing. Results should be back within 2 weeks apparently.

Annoyingly (on time as typical for something) TSW kicked in the day before yesterday and started its lovely flaring. I didn’t have time to put protopic on as my schedule was so full I simply didn’t have time to sit and wait several hours for it to go in.

So yesterday morning came and by 8am I was up the hospital. Had my surgery and: Upon waking from the general anaesthetic to a whole world of pain above my groin (where a clump of the biggest lymph nodes are/were) I asked for some pain killers. The nurse bought me 400mg of ibuprofen.

Something amazing happened though. Within 2 hours all the swelling in my skin went down, all the oozing stopped (presumably the ooze is the fluid from the swelling?) and even though it was patchy red it did not itch at all. By the evening aside from my chest and tummy I was completely clear…without the use of protopic.

I checked with the nurse. I wondered if at some point during the time I was under anaesthetic whether or not the doctors gave me steroids. Because literally my skin felt as good as when I used to take prednisolone for my asthma. The answer was no.

So in conclusion the only answer was the ibuprofen! My skin today is pretty dry but still no swelling and very little itching.

I wonder if the itch from TSW is entirely to do with the swelling and subsequently the oozing? As when my skin swells, once I scratch it to peices and it starts oozing the itch begins to leave and I am left with broken oozing skin, with no itch.

I never thought to try NSAIDS for TSW. When I mentioned it to my wife (who is a registered nurse) who came to pick me up after theatre she said well that could work. Because even though ibuprofen doesn’t do a great deal for eczema: TSW is not eczema. Its swelling and redness.

So ill try this when I start getting a flare. I mean I have only put protopic on twice this week. I would much rather take NSAIDS rather than protopic due to the horrid side effects of the ointment!

I have now been in a TSW ‘break’ for 2 days. Which would ordinarily be nice. However being the completely unfair peice of crap that it is; TSW isn’t even giving me a break, during a break.

You see 3 days ago my flare began to subside in the evening. Thank goodness I thought. But the next morning I woke at about 4am. Not due to heat, not because I wasn’t tired, not because I was hungry.

But due to the sole reason that I had to literally scratch myself to peices.

Even though my skin is basically clear of ‘TSW rash’ my skin is back to being broken, weeping and having red lumps simply because I cannot stop scratching.

The itch begins as a small niggle that I try to avoid, then after a few minutes I simply have to scratch it because it becomes too prominent to ignore. The trouble begins after this because the itch does NOT go away. I scratch the area and the itch will move a couple of centimeteres away, with the same intensity. Often the initial itch only dies down momentarily so now I have two itches, and thus I scratch it again which causes a wider itchy area; this spreads until its almost entirely consuming one limb and I scratch the area to shreds because the itch can only be described as ‘pure insanity’.

Sadly this has beaten me down somewhat. A couple of days ago I managed to rally my spirits and decide I would get this done and just enjoy the occasional clear day to the fullest and bully my way through the rest. Now I can’t even do that.

I don’t think I have ever felt as depressed in my whole life. Its not a shut yourself away and cry depression: its a constant smothering depression where in the past two days I can’t even be bothered to initiate conversations. Normally I’m a loud person always laughing and joking but right now everything seems pointless because I am never comfortable, always tired and most of all always thoroughly pissed off. I don’t appear to have any other emotion than “meh” and I probably seem like some sort of hormonal teenager.

I try my best when I am around my children but even that is difficult. I can’t find anything funny and I feel like I have lost my ‘sparkle’. I hope the itch is just a phase, because quite frankly it is driving me round the bend.

I suppose the best way to describe the itch is the infuriating ‘healing itch’ you get when you have a stitched wound. If anyone has had this before they will understand what I mean. It is pure evil.