I’m back! Where has 2 years gone!?

It’s been a while! Nearly 2 years since I last updated my blog & thought it was about time I reconnected & updated you all on how I’m getting on with my journey through TSW.
First of all let me explain where I been for 2 years! The last time I posted on here I was unaware I was 3 weeks pregnant! I was only 9 months into my TSW journey & still enduring full flare ups, severe depression & anxiety, & had no idea how I was going to cope with it all! However, I’m not sure if it was being pregnant or just having a new focus, but my skin was the clearest it’s been in years while I was pregnant. My legs went from being swollen, sore, red raw, scabby & flaring constantly, by July (7 months pregnant), 1 1/2 years into TSW, I was FINALLY comfortable in dresses & sandals & my legs & feet have not flared up since then!!! It’s amazing the difference now. Still not comfortable enough to have my pins on display publicly as they’re very pasty & still full of scars but I can’t remember the last time I scratched my legs or feet. Honestly, it sounds silly but that’s SUCH A BIG DEAL!!!! It’s HUGE! It’s such an achievement! 
However, I’m nowhere near cured, healed or otherwise. There’s still stings & twists to this TSW journey…
At 32 weeks pregnant (7 weeks before my due date) I woke up on the Friday morning knowing something was wrong with my baby. I had weird pains I couldn’t explain that weren’t going away & hadn’t felt movement from baby all night. I called the labour suite & they told me not to panic but to come in when I could that day to be checked. I went in that morning & had checks done, baby’s heartbeat was fine & they wanted to send me home. I refused & said I knew something was wrong & wanted a scan. After giving in to my pleas & many tears, they did a scan & found I had a tear in my amniotic sac & that baby had stopped growing at 24 weeks, was barely 2lb & was receiving no fluids. They wanted to do an emergency c-section by Monday morning. They explained I would have to have TWO STEROID INJECTIONS to help babies lungs develop as much as possible over the next 48 hours before they performed the c-section. I had my first injection that afternoon, but that night whilst I was hooked up to monitors, & told to lay in an awkward sideways position to give baby the last bit of fluid I had left to survive in, I watched & listened to the monitors as my baby’s heartbeat gradually reduced & slowed. It was by far the scariest moment of my life. They decided they had to operate the following morning & at 9.41am on 8th August 2015 I gave birth to my beautiful miracle Marley weighing only 2lbs 5oz. 

I was taken to the maternity ward to recover where I was then told there had been a flood in our hospitals NICU & that Marley would have to be transferred to another hospital’s NICU ASAP. I was so scared, but thankfully he was moved to a hospital not too far away & after spending 5 weeks in NICU we were able to take Marley home. He’s now a very happy, healthy 17 month old. Still very small for his age but a clever lil chap, I’ll tell you more about him later.
During this crazy, stressful time my skin went into haywire. Of course emotions are a trigger for flare ups & the fact I had a steroid injection I felt set me back to Day 1 again. My legs & feet never flared again as I said but it’s now the top half of my body that struggled. My face & neck were constantly red raw, oozing & sore. My hands, oh, my poor hands. They were an utter mess. There were days when I would go to see Marley in his incubator & not even be able to have that minimal contact we could have with our premmie babies (through the holes in the side of the incubator) I couldn’t stroke his little head, or hold his tiny fingers where my skin was so red raw, oozing & blistered. I feared I would give my son an infection, that I would pass on something nasty. It was heartbreaking. I was an emotional wreck at that time. I would put on a brave face & would try & have a laugh with the nurses & make the most of the situation but not only could I not just take my baby home & love & care for him I couldn’t even touch him some days where my skin was so horrendous. I wore bandages as much as I could, caked myself in cetraben emollient cream & took 4 antihistamines a day, & just cried, & cried & cried at times.
My skin on my face, neck & ears then from August 2015 – February 2016 (6 months) went through mini flare ups every other week. They would last 5-10 days at a time & would consist of my skin feeling hot, bubbly & itchy for first day or two. Then bright red, blistered, oozy & sore which could last from a couple of days to a week, then tight dry & scaly, flaky skin, very itchy at this point (if I catch myself scratching can set myself back to day 1 again!) which lasts a couple of days but then I have the odd day or two where I have ‘PERFECT SKIN’… I call it that as my face feels normal, no itching, no red patches, no flaky skin, no oozy patch, no scabs. Just clear, happy skin. I know I’m having a ‘PERFECT SKIN’ day as I get my iPad out & enjoy taking selfies with Marley, it’s been a long time since I felt comfortable enough to do something as basic as a selfie, but for someone who (a couple of years ago) wouldn’t want to leave the house for fear and anxiety of the hoards of people that would make comments like “oh, you’ve caught the sun!” & “my sister had dermatitis on her elbows til she tried so-and-so”, or just give me weird looks or even just stare at my face when it was really bad (and still get now when I’m in the worst days of my flare ups)  I now enjoy sharing pictures & selfies on social media & feel so much more comfortable in my skin mentally too, but my confidence returns when I’m having a ‘PERFECT SKIN’ day, if that makes sense!?

My hands & arms again gradually improved after Marley came home & we started getting into a proper family routine & by October 2015 – February 2016 I would have mini flare ups, nothing like I was having before I had Marley or whilst he was in NICU but I would have the ‘red sleeve’ appear, & then the same process as my face & neck. The flare up would follow the same pattern, red raw, blister, ooze, dry, flake, repeat… the one big difference is I now prefer having my arms out & giving them air, before I would cover them up but now find covering my arms more irritating, it’s like they get too hot & then the itch starts & then that brings on the scratching cycle & boom! You’re in a flare up! 

By February 2016 Marley had started getting baby eczema. I feared he would get eczema but I was glad I had such a knowledge, & experience of living with eczema & more importantly the dangers of topical steroids. What I wasn’t prepared for was the battle my partner & I would now face as parents with a child with eczema, & tackling paediatric dermatologists! There’s so much to say, I’ll write a separate post on that whole subject in the next week or two but the short story is we ended up using topical steroids on Marley for 2 months. (Yes, shout at me, throw things, get angry, gasp in shock. I know. It hurt me too, as I say, I’ll explain more in a separate post!) needless to say, me applying steroids to Marley for 2 months effected me MASSIVELY.
Since stopping using TS on Marley in July 2015 I’ve gone through several long, painful flare ups effecting my skin on my arms, hands, neck, ears & face. I’m adamant I’ve been worse in those areas alone as they are the only areas exposed to TS when I was applying it to Marley with my hands, he would then touch me, cuddle with me etc & now my skin and body is again feeling a withdrawal all over again. 

Along with the horrible flare ups with my skin I was also suffering with – 
– Unexplained aches & pains. It starts in the morning with a dull burning pain in the middle right of my back, then throughout the day the pain spreads & moves depending on what I have done in the day. On a day spent at home, no housework, doing little as possible I hurt in my back, hips, & shoulders by the end of the day. If I then add a task be it, housework, shopping, taking Marley to soft play centre etc, the pain then spreads & it gets more painful & severe & it takes me longer to recover. The pain constantly moves & except for the burning pain in my back I never know what’s going to hurt. 

– Pins & needles in hands, feet/ankles. I’ve had the tingling sensation in my hands throughout my TSW, but this past year it’s gotten worse. I can have good days where I just get pins & needles/numbness in my hands when I wake up first thing, other days I get attacks of it on & off throughout the day, & sometimes in my feet & ankles too when I sit down (typing this now I have it slowly going numb & tingling on my left hand & wrist) the worst part is the lack of grip I now have with it. Again good days I can brush my hair, pick Marley up, do some washing up, etc. But I get random moments of losing grip (recently dropping loo roll down the toilet as it fell out my hands, dropping my iPad on the floor when I go to pick it up, having to use both hands to hold a mug of tea steady), I can’t open bottle tops or screw caps either at times which then leads me to have a toddler like tantrum!!!

– Dizzy spells & feeling light headed. I can be playing with Marley or just sitting on the sofa & go to stand up & get really lightheaded & dizzy. Takes me a few seconds to refocus & adjust before I can sit down or walk to where I was intending to go. 

– Forgetfulness & a ‘haze’ that comes over me. This is probably the biggest issue in my relationship at the moment. I feel like I’m going crazy sometimes. My poor partner has to bare the brunt of my health issues & this is really getting to me. He will tell me something, I know I’ve listened, I’ve spoken to him about it, yet 5 mins later or when he mentions something about it again I’ve forgotten what he’s said & ask the question again. He gets so frustrated as he tells me he’s already had that conversation & tells me what I replied but I don’t remember. Or he will be talking to me & my brain suddenly switches off. He goes almost into a murmur in the background. It’s so frustrating & when talking to other people can be SO embarrassing as I seem disinterested or not listening if I have to ask them to repeat themselves. I have also started to get words muddled when I’m talking (usually worse if I’m anxious or upset whilst I talk) but I used to consider myself a confident person, didn’t have problems talking to people be it face to face or on the phone. Now I hate it as I get so frustrated when I’m talking I’ll forget what I was saying or just can’t find the words to say what I mean. Drives me mad!!! 

– Headaches – get terribly painful headaches every couple of weeks. It’s always the same kind of area in my head (left side just above my eye) that has a constant searing throb, no matter what painkillers I take it just goes away in its own time be it a couple of hours or a whole day, I can’t handle too much movement, light or sound when I have one and just have to try & sleep it off. 

– Lack of energy/sleeping problems. I constantly feel tired. I mean, constantly. No matter what sleep I get 4,8,12 hours sleep it doesn’t matter. Some days I have more energy than others, again that depends on what I’ve been doing the day before or earlier. If it’s a simple day at home, I just feel tired & may sneak a half hour nap in when Marley goes for his but if I’ve been shopping or done housework etc all I want to do is lie down & sleep for the rest of the day. (Which obviously isn’t possible with a 1 year old!)

– Feeling Emotional/Mood Swings. Lastly I think this is tied to my anxiety & depression anyway but I have terrible mood swings. I can cry at the drop of a hat some days & can’t quite get a hold of why, then other days (again my poor partner bares the brunt of it) I can just snap & get so angry & just start screaming (again, this is usually after a frustration of dropping something for the umpteenth time, or forgetting something I went upstairs for etc).

A few months ago, after suffering with so much pain & knowing I wasn’t right for so long, I went to see my local GP. After several blood tests showing nothing, an MRI scan, & meeting with a physiotherapist, I was diagnosed with fibromyalgia which is a chronic pain illness. I believe this was caused by the crippling effects of TSW. They say fibromyalgia can be caused by a traumatic event (originally thinking Marley’s birth was to blame) but when I pieced together all my symptoms I had been suffering with the 2 main symptoms since starting my journey through TSW, severe pain in my lower back & extreme lack of energy/feeling tired all the time.
So now I am starting 2017 with a new focus in life. I want to be as healthy as my body will allow. I want to ditch the medications, tried so many pills this year none have worked. I need to focus on being healthier with my food and exercise choices. Know when to slow down when I need to recover & heal. Don’t beat myself up when my next flare up arrives after I’ve enjoyed some ‘PERFECT SKIN’ time. Know that a flare up will happen, accept it, understand it’s apart of my healing process & things WILL improve. My legs are my proof of that, & most importantly, enjoy every moment of being a mum! 
Here’s some pictures of my progress & I promise I’ll update you all again soon! X

9 months into TSW already!

Been a while since I’ve updated my blog of my journey through TSW….

To be honest I’ve really been battling with my anxiety and depression these past few months. I’ve just had zero motivation or inspiration to do anything. Most days spent dragging myself out of bed to just find myself slumped on the sofa wrapped up in my duvet wasting my days away on my iPad or watching TV. This journey is not an easy one and there’s so many twists and turns. One day I can feel great and my skin feels almost ‘normal’ and I’m proud of myself for leaving the house for a few hours, then BAM! I wake up another day and I’m in so much pain from the cracked, tight weeping skin all I want to do is huddle in a ball in bed and cry.

Trying to be positive though, my skin has certainly progressed over the past couple of months and I’ve found when I’ve had a flare up they’re a little less ‘flared’ than before, however the flares seems to be rotating around my body now too, so when I think “oh, I’m healing there!” another part of my body becomes itchy, red, swollen and the cycle starts again in a new area!

Since Month 2 I’ve really struggled with my arms and hands the most. The ‘red sleeve’ spread up to my armpits and down to the base of my fingers. Each day I’ve woken up to dry, sore, cracked, flaking skin on my arms and hands and it’s like all the creases (not necessarily joints) in my body have split and stretched (fingers, wrists, elbows, neck, ankles, toes, back of ears, lips), and it feels like loads of paper cuts, really stinging at times.

I’m having a constant battle to not scratch myself silly when I first wake up (which sometimes I win, sometimes I lose and hate myself for it). As soon as I wake up I dart into the bathroom and cake on a mix of Cetraben emollient and jojoba oil on my arms and hands which allows my skin to move freely enough while I have a (stinging and uncomfortable) wash/clean teeth etc. I then change into clean leggings and a long sleeved cotton top and then return to my bedroom where I have to clear up all my shedding skin from the bedsheets and floor from the night before. It’s a gross necessity and daily ritual at the moment and so very depressing. I’ve blocked the vacuum cleaner several times and desperately need a Dyson or something decent that could handle a lot of use!!!

Over the past couple of weeks however, I’ve finally started to see an improvement on my arms and hands though and I noticed the difference when my dog Trigga tried to come in for a cuddle with me on the sofa and I didn’t flinch in pain when I started to stroke him. Over the past couple of months I’ve not been able to handle being touched at all where I’ve felt so sore and sensitive on my arms and hands, yet a couple of weeks ago I spent all afternoon cuddled up on the sofa with my partner cuddling me and me cuddling Trigga 🙂 it felt wonderful. I even managed to go out for a couple of days shopping and stuff but at night I would suffer where my arms and hands had been rubbing against my clothes and they would feel even more dry and tight than usual the next day, but I’m certainly having more ‘good days’ than bad this month (month 9).

My feet and ankles seem to be the latest target for the ‘red sleeve’ which I have been dealing with for a month now. At times I’ve struggled to walk far from the pain and discomfort in them. They have gone through the exact same feeling my arms and hands have done. Intense itching and burning sensation, then swollen and weeping, then dry, cracked and red raw. I’ve tried wrapping my legs in bandages, cling film, socks, tights, leaving them free of clothing, caking them in cream, leaving them to dry out, nothing really helped relieve them and I’ve just learnt to deal with them and try not to scratch or pick at my legs or feet (although they’ve been so painful and swollen most of the time I don’t even dare scratch them thankfully!!!).

I have noticed that when I’m due on my period I have a mini flare up on my face and neck which lasts a couple of days and also when I’m ill I seem to have the same thing (had a tummy bug last month and face & neck took 2 weeks to heal again). Although NOTHING like I’ve had in the past! My insomnia I was severely suffering from during Months 2-4 of TSW has improved massively and I seem to be back to sleeping 12+hrs a day again (although sometimes wake myself up scratching), some nights are a little broken up but MUCH better than before!

I’ve lost more weight as my appetite has stayed relatively low compared to how I used to be. Not sure if that’s because I’m going through TSW, because I’m generally thinner, or something else but I now weigh 11st (and fit into my skinny jeans I’ve owned and never worn for FIVE years! So not complaining too much about that!!!)

I hadn’t heard from my dermatologist about Light Therapy for a while, for some reason there was a mix up and they had sent my first appointment letter to an old address, as they hadn’t heard from me they discharged me (not only from the Light Therapy waiting list but from my Dermatoligist altogether)!! At first I was angry, then I thought “sod it!” I’m doing ok, as I am, why stress myself out committing to the journey of 4 buses a day, twice a week for however long to go for my treatments at the nearest hospital, to visit a Dr who really can’t do much for me right now other than NOT prescribe me TS!

Over the past couple of months I’ve been suffering with really bad lower back pain and sudden numbness in my fingers and hands (especially when I first wake up), so I went to my Dr and she did a blood test on all sorts of things including my cortisol levels. Turns out I have a severe vitamin D deficency and so was put on supplements in December. Feeling better since taking them I have to be honest! Seems lack of sunshine is to blame but when u don’t feel like leaving your bed let alone your house most days no wonder I had a deficency!

A bit of positive news I had though, after going to the Work Capability Assessment in November, I have been accepted for Employment Support Allowance and have been put in the higher category of ‘Support Group ESA’ which means I get a little extra benefit a fortnight than the standard ESA amount. It’s a huge relief to know I was accepted and although we are still in a tight financial position, I know I get my benefit every fortnight now and there’s no more panicking when I will next have some money or having anxiety attacks about having to go to assessments etc. A tip I will give anyone going through the process of claiming ESA is when you go to your assessment, take as much evidence with you as possible, I took my iPad and showed them the pictures of my skin in various stages of flare ups (after the success it brought me with my dermatologist) and described how I dealt with each stage, how it made me feel, how it restricted me in day to day activities, etc. BE SPECIFIC! I filled out the questionnaire they send you using extra sheets of paper on every question going on and on, yet the woman assessing me barely looked at it whilst I was being assessed and said she needed ‘bullet point’ facts , but she did pay attention to the graphic pictures I was showing her and listened to every word I said with a ‘oh you poor sod’ look on her face and used that info instead, which seemed to make it easier to understand. When they have the facts in front of them like that I don’t think they can deny the pain you are describing you know?

I’ll post another update soon, here’s some pics of my skin from the last couple of months…

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Red Sleeves, Insomnia & A Small Victory!

Hi all, today marks 2 months since I gave up using topical steroid creams! Each week (and sometimes day!) my skin is changing and progressing through TSW. My skin has in some ways improved recently and in other ways it has got worse. My face is calmer, a lot less red and painful. It’s mostly dry and I’m getting through tubs of Cetraben at the moment keeping it as comfortable as I can. I still get a little oozing on my chin and around my ears, then it dries, cracks, flakes, then the process starts again.

The worst areas at the moment are my hands and arms. They are a red, painful mess!!! First the intense itching began and the burning I had felt on my face moved to my arms (which lasted a couple of days), I have scratched my hands red raw and they’ve been so cracked and dry they just don’t want to heal. It’s made the most simplest of tasks painful and sometimes impossible. Brushing my hair has nearly made me cry when I hold my comb or ping my hair bobble onto my fingers by accident (as I tie my hair in the bun it’s been set in for the past 2 months as the feeling of hair touching my face was too much to bare!) I have lost grip when trying to open things (like a pint of milk) which is bloody infuriating and makes me feel like a helpless child at times. (The inevitable childish tantrum then begins with tears, sometimes screaming and a lot of ‘why me’s!?’)

My arms and hands now feel like rough sandpaper and although the intense itch has subsided I still get little itch fits. I now have the ‘red sleeve’ I have read so much about, and the redness seems to be spreading further up my arms too.

My insomnia has got worse if anything, I’ve had one full nights sleep in a month. I feel totally fatigued and am a total mumbling, tired, red raw zombie at the moment. No amount of tv box sets, films, iPad games or books have helped bore me to sleep either. Doesn’t matter what time I go to bed or how knackered I am I get a maximum of 3 hours sleep then I’m bolt upright, wide awake and have no idea what to do with myself. I am so fucking fed up with it! To make matters worse, my shitty sleep pattern has now effected my ever suffering OH and he now has the same problem! Poor sod ain’t slept properly in over a week now.

My appetite has stayed low and I have lost 11bs this month (I now weigh 13st), noticed none of my clothes fit me anymore and again my OH seems to be copying me as he’s lost loads of weight too where he’s not cooking so much food but he’s not complaining about this side effect of TSW as we could both do with losing some weight anyway! Lol 😉

On a (I suppose another) positive note, I went to my dermatologist last week for the first time since discovering TSW. I wanted to go prepared so used my insomnia to my advantage and gathered info I could take with me to my appointment as I knew if I just went and said “blah blah blah” that’s literally what would happen. I would go in there, stumble over my words with nerves and anxiety, not be heard and make no sense and come away feeling crap. So I took loads of screenshots from the ITSAN website with the symptoms of TSW and the evidence found by Dr Rapaport and a few of the pictures on there. I also had all my pictures I had been taking before and since stopping TS and made a quick slide show (yes, I really made a slide show with graphics, dates and side by side comparisons!) I took my iPad with me and felt ready for a battle.

When I first went in my dermatologist started reeling off an update of where we were last time I had seen him (found the colophony allergy and ongoing issues with skin, you know, the usual!) and I felt he was rushing me out as usually I go in, he gives me more TS and I leave, so he was surprised when I asked him if he had ever heard of Red Skin Syndrome/TSW or TS addiction. He said he had heard of TS addiction and that I’m not suffering with that and started to talk over me. I asked him to just hear me out and explained I had some info I wanted to share with him. As I began, both he and his assistant nurse rolled their eyes and their body language changed like “oh here we go…”, I suddenly got all shaky and started to tear up but felt determined to continue with what I was saying.

I’m glad I did, because after I had explained about everything I had found and then showed him the slide show of my progress he started to agree that my skin had shown signs of TS ‘dependency’ (what the difference between addiction and dependency is baffles me but he wouldn’t use the word addiction!) and he turned to me and said “I have to commend you, it’s a very brave thing you have done and it certainly explains a lot”. Now for me, that is a triumph! If not a little patronising, I’ll take it! He said he would support my decision to stop using TS, however, said he was concerned that I didn’t want any kind of therapy for my atopic eczema. We discussed immunosuppressants again (cyclosporin has been mentioned a few times but the seriousness in the process you go through whilst on it, side effects etc just scare me off them) and so I refused to try them, however we came to an agreement on another course of Light Therapy. I had tried UVB LT before without good results however at the time I was using TS so any benefit of LT would of been wasted anyway I suppose, so I am now on the waiting list for UVB LT again as I feel there’s no harm in giving it a try now I am a couple of months into TSW and seeing if it helps this time. Reading others experience of LT whilst going through TSW is quite positive so hopefully it works for me this time! Will keep you updated when I get started.

Letter to my GP from my Dermatologist

Letter to my GP from my Dermatologist

I’m still going through the process of claiming ESA benefit, I have just sent my health questionnaire back to the DWP and am waiting for an appointment for the Work Capability Assessment, which I understand is the final stage before they decide wether I can continue claiming ESA. At least for now I am getting financial support, it’s been a nightmare to this point though and I just hope they accept my claim as I just couldn’t cope physically and mentally with a job at the moment, for anyone working or at school going through TSW I think you’re all superhuman because this is seriously tough at times!!!

As my face is calmer now I have felt slightly more comfortable leaving the house (although can’t go out for longer than half hour before my skin is on fire, itching and I start to feel knackered and uncomfortable), I’ve taken the dog for a walk a few times and went shopping in town too. I needed to get some clothes I felt comfortable in. Even though the weather is warmer now, I find seeing my dry, flaky, scabby bits means I scratch more so I went into Primark (cheap and cheerful and don’t care if I ruin new clothes with cream stains, flakes of skin and spots of blood!) and I got a long sleeved top, some light weight 100% cotton pj bottoms, and a pair of leggings. I certainly feel more comfortable and I am definitely scratching less! 😉

I’ll post again soon, hopefully with news of my Light Therapy sessions, and more progress updates.

 

 

Here’s a few pics of my skin over this past month (sorry again for quality of pics, never the best!)…

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One Month Into TSW!

I have now been Topical Steroid free for one month now. I’m learning this process is a total rollercoaster. The first week so far has been the worst for me, although the rest of the time has certainly not been easy to cope with either. I’m in a bit of a stagnant stage at the moment, I’ve clearly started to come out of the worst of my first flare as my skin looks and feels nowhere near as bad as it did in Week 1 of TSW, but my eczema has now spread and is causing me pain and discomfort especially on my hands, elbows and feet.

I’ve found over the past couple of weeks I’ve totally lost my appetite, I love my food and having a partner who’s a chef, I’m well fed (even skint as we are, it amazes me the meals he can make with what little choice of food he has in the cupboards to work with!).

I would normally have 2 big meals a day and maybe a snack or two with plenty of cups of tea throughout the day. (I also found when I was working I ate a lot more) however lately I’ve been eating maximum of one meal in a day or just a slice of toast and a few cups of tea or a bowl of soup and that’s it. I just don’t feel like eating. I’ve noticed I’ve not lost any weight, I’m still 13st 11lbs (which I have been since January).

I’ve also been suffering with insomnia, I had been sleeping 12+hrs a night but this week especially, I find I’m lying wide awake in bed and no matter what I do to get comfortable I just can’t drop off to sleep. I’m itching most at night too which doesn’t help, it’s like a deep down to the bone itch I can’t reach and it’s worst in my arms and hands, also had oozing on my neck and ears which makes me hot and irritated. Something else I’ve noticed (although not sure if it’s anything to do with TSW) I need to go for a wee a lot! I’m not drinking anymore than usual, yet I’m going for a wee every half hour/hour and it seems to be worse at night. Very annoying!!! Going to keep an eye on it as my mum has recently been diagnosed as suffering with diabetes and I’ve read that it could be one of the symptoms, but hopefully it’s nothing like that.

I’m constantly exhausted and still have zero energy. I find it a triumph if I manage to do some housework or washing clothes. I have days where I just can’t and don’t want to get out of bed and manage to have a nap for an hour here and there, today I had a burst of energy and so I’m writing this post, other times I don’t even have enough concentration or energy to play a time wasting game on my iPad.

As I’m not working at the moment and feeling like utter crap, I’ve recently made a claim for Employment and Support Allowance. Fuck me. What a drama. I’m already suffering with severe anxiety and depression and trying to claim benefits and receive some sort of financial support at the moment has not helped me in the slightest. It is the biggest headache and they send you in complete circles. I’ve never been so stressed, confused and angry! My partner has been so supportive and has been talking to the DWP most of the time as I get so confused and flustered I end up bursting into tears and physically shaking with anxiety as they all tell you something different and make it as upsetting and distressing a process as possible. I’m going to have to battle through it as right now we have no other choice!

I had to go to the Drs to obtain medical evidence that I am unfit to work. I haven’t wanted to leave the house for the past 3 months and it was really tough just getting a bus to the Drs surgery. My Dr could see straight away what a state I was in and gave me an unfit to work note for 13 weeks. Whilst there I tried to explain the basics of TSW and said I had an appointment with my dermatologist in June to discuss further, he asked if my eczema was infected and if I needed some TS & antibiotics!!! I avoided rolling my eyes and just declined, explaining I would wait and talk to my dermatologist about it. I didn’t have the energy to try and re-explain!

I have had some success in using Epsom bath salts and jojoba oil. As I’m on an electric meter, I currently can only afford to have one bath a week (however, would certainly have one a day if I could!) of 1 cup of Epsom bath salts, and a few drops of jojoba oil only. I try and soak in the bath for at least 30 minutes. It really calms my itching down, reduces the swelling I have in my legs and redness in my skin too. I also use a mix of my emollient cream (Cetraben) and jojoba oil as a moisturiser, and apply as and when I feel I need it. Lately my face has really calmed down and not been red, burning and oozing but a little dry and flaky. I still prefer not to use moisturiser on my legs and arms as I seem to itch more.

I have also found a distraction during the day that helps keep my mind off feeling so low and also not itching so much… TV box sets!!! Lol! I’ve got through Game of Thrones S1-4 (wow! What a SERIES!) and now enjoying Prison Break (seen it before, but great series!) and have Lost lined up too. It makes days go quickly and just lets my mind switch off for a while, may sound odd but honestly, it’s really helped me this week!

Wish me luck with my quest to claim ESA and my first trip to my dermatologist since finding out about TSW! I’ll let you know how I get on! I’m always posting on the ITSAN Forum and find it another great comfort and support through my TSW journey and recommend it to anyone wanting more information or support with TSW.
Here’s a few pictures of my progress from Week 3-4 and the eczema on my legs, feet, hands and elbows this week. (Never feel like the phone camera pics do it justice as it looks worse in real life! Lol but it gives you an idea).

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I Survived Week One…

Well. It’s Day 10 today and I’ve survived the first week of TSW. Bloody hell it’s been torture.
Ive decided not to hold back on my blog as I am kinda using it for therapy so I warn you now most of my posts WILL contain swearing, and probably lots of it so please don’t be offended. I’m going to express how my own individual journey is progressing and although I’m experiencing most of the symptoms everyone handling TSW experiences, my emotions and how I handle them are completely my own, and I have really struggled this week!!!!

 

Day 1 – My face is on fire!!!! My cheeks, chin and forehead are the worst parts, I itch like hell on my legs (which have been covered in eczema for years and NEVER heal, this is the area I have used TS the most and the longest) and my hands (which had healed) have started to itch again…

 

Day 2 – WOW!!! I can’t see!!!! My whole face has swollen up and my eyes are the worst area I have to bathe eyes in cold water for about an hour just to be able to open them, I’m having a mild panic attack as fear I’ve suffered an anaphylactic shock and not sure wether to use my Epi-Pen!!! I don’t have difficulty breathing so my partner goes into a frantic ‘googling’ session of ‘swollen face TSW’ etc… Turns out quite a few people suffer with it and that’s what ‘Edema’ is… Yes, remember reading about that in the symptoms (found in my first post). Most people who wrote about looking and feeling like you’ve gone 10 rounds with Mike Tyson says it lasts about a week during first flare. My first thought… Bollocks!!!

 

Day 3 – Today is my partner’s 30th birthday and he has to spend it with the crusty elephant woman… Poor sod is suffering with man flu anyway so doesn’t feel much like celebrating and so the day is spent indoors with a visit from his mum. As soon as she saw my face (and tried not to gasp, although her eyes said it all that she was horrified!) she asked me what was going on, as I explained about TSW and Red Skin Syndrome she nodded and said “I’ve been telling you for years to stop that crap”.

You see, my (future) mother in law never visits the Drs, doesn’t take any medication and is very much into natural healing and all that shit. I say, if you have a cut put a plaster over it, she would say rub some lavender in it. Although she has tried to coax me to give up TS in the past, I thought she was full of rubbish and carried on listening to my dermatologist. We don’t agree on a lot of things but I have to say, this time she is right.

So after the obligatory “I told you so’s”… She told me to go clean my face with cold water and pulled out her emergency bottles of lavender and tea tree oils from her bag and asked me what was causing me the most discomfort (as you can see in pic at bottom of this post) the worst part was how swollen and red raw my face was. So she made a mix of lavender, tea tree and my emollient cream (Cetraben which is a mix of light soft and light liquid paraffin) and gave me a facial massage caked in the mix. At first it burnt and felt sore but as the cream sunk in I felt relief and the burning feeling I constantly felt since Day 1 began to subside. About 10 mins after the cream had sunk in, I felt like I was sweating, I had drips appearing on my T-shirt and realised my whole face was ‘oozing’ a clear yellow liquid. It was like all the toxins in my face were suddenly escaping and it lasted for about 30 mins. The swelling in my face seemed to calm slightly throughout the day and I felt less itchy all over.

 

Day 4 – This is the worst day so far. I went to bed the night before feeling positive and felt my face had really calmed down by the evening, yet I woke up today and FUUUCCCKKKKKK I’m in SOOO much pain!!!!! My face has ballooned again, but now my face is EXTREMELY dry and cracking and no amount of emollient, ice packs or essential oils could help me relieve the pain and discomfort. I felt absolutely miserable and today my mood really hit a low. I couldn’t stop crying, I just felt like utter shit and nothing I did helped me feel any better. My eczema is starting to spread too and for the first time  I have it on my thighs (one of the only places except my chest & stomach I never got eczema). I spend the whole day in bed, trying to sleep so I didn’t worry about how I feel, I’m not much better the next day and nothing really improved.

 

Day 6 – Swelling seems to be getting better, I woke up today and my eyes were still swollen but by the afternoon the swelling had gone down, however my face and now my neck are feeling red raw and on fire. I last the day covering my face in ice packs and emollient cream. Just trying not to let my skin dry out and crack as my chin and around my lips feel like their getting worse. The next day is pretty much the same and I’m just trying to keep my spirits up that I’m better than I was the day before and it’s a long process.

 

Day 8 – My skin feels so tight on my face today but I still woke up with swollen eyes. I’ve taken to having 2 Ibuprofen and an Antihistamine in the morning, followed by an ice pack til it’s melted (which is for about an hour depending on how red hot my face is!) and then I cake my face in emollient throughout the day. Eczema has now spread and is covering EVERYWHERE!!!! Neck, chest (including my boobs which is horrendous!) stomach (including cracked belly button which is killing me!) back, thighs, legs, feet, arms, and hands! I’ve never used emollient on my body as I hate the feeling of it (it makes me itch more) and so am just trying not to scratch it too much and cause open wounds (which is much easier said than done!).

 

Day 9 & 10 – Much of the same, feeling and looking like shit! Have my routine now of sleeping in for as long as possible (I’m not currently working, thankfully!), waking up and completing my routine I explained on Day 8, then trying to keep myself occupied for the rest of the day. Although I have absolutely zero motivation to do anything, the housework has gone to pot, my ever suffering partner has had to endure a number of tantrums and tears from me throughout the week and is being as supportive as he can be bless him. My mum has been amazing and offered any help she can, I’ve been reading (and posting) on the ITSAN Forum a lot this week and asking for advice through my journey of TSW and I’ve noticed Epsom bath salts and Jojoba oil keeps cropping up as good relievers of dry skin, itching etc so my mum has even brought me some of each to try!

I had my first bath with the bath salts in it today. I have to say I felt less red raw and itchy when I came out but my skin on my face now looks a bit like I’ve scratched it and it’s quite dry, so have had to use more emollient on it but that may just be coincidence. My jojoba oil should arrive in the post tomorrow so will let you all know how I get on with both of them.

This first week has been really bloody hard. Full of a lot of “why me’s???!” And “not sure I can do this” moments. I’ll be honest, I’ve felt really fucking low. My self esteem has never been more rock bottom and my mood is just constantly low. My partner keeps telling me how strong I am and how proud he is of me and even typing this now I’m welling up as I’m so grateful he is supporting me through this hell cuz I have really struggled this week. I know I’ve got a long way to go, but with this I have to take each day as it comes. I’m in constant pain and discomfort and don’t want to leave the house for a second, I just occupy myself with TV, my IPad, and Twitter lol 😉

So, I’m now into Week 2… Will let you know how I get on…

 

Here are some pictures of my progress this week. Sorry for quality of them, all taken on mobile camera! Apologies for the state of me but just want to show you what I’m going through.

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ITSAN Website

 

 

My TSW Journey Begins…

I’ve suffered with Atopic Eczema since birth, it was really bad as a baby/toddler (all over my body) and gradually improved into my teens (only a bit behind my knees), however over the past 5 years my skin has become horrendous again and it has taken over my life.

I have always been a sicky person. I catch any bug going and also suffer with anxiety and depression since I was 15 years old (when my father died suddenly), and my emotions do effect my eczema but I just had a feeling it wasn’t JUST my allergies and eczema causing my skin to be so painful and raw. My eczema went from being in patches behind my knees and the bottom of my legs (a few scabs here and there were I am constantly picking the scabs or scratching them off due to itching) to being all over my body, but especially my face, neck, hands and feet were bright red and raw (just like the sensation of sunburn) and then my skin would go dry and tight and my skin would become flaky and peel off, and I knew something wasn’t right.

I am 27 years old and have been in a constant battle with my dermatologist about my skin for years. I have tried light therapy (which I felt was useless and actually caused my breasts to burn), I have been offered Ciclosporin Tablets (which scares me with all the side effects it has!) and of course the thing my dermatologist provides the most is topical steroid creams. Hydrocortisone, Betnovate, and Dermovate were the 3 I’ve used the most and most often. I know I’ve used steroid creams since I was a child and not just for 2 week stints. My dermatologist recommended I use them every day with a strict routine (which I’ll be honest I don’t bother with properly anymore and just use them when I have a flare up). Finally I got my dermatologist to realise that the pain and discomfort I was in wasn’t just my atopic eczema so I had a patch test done (which I thought was the answer to my problems) and it revealed I had a severe allergy to Colophony. So then I found myself chucking out everything I owned that had that ingredient in (and trust me, it seems like it’s in bloody everything!) from make up, cleaning products, to paper and ink!

For the past 6 months I have been free of any colophony type products, wearing no make up (which has made me feel ugly, self conscious and depressed further!) avoiding touching paper, even quitting my job as an admin assistant in a office as to avoid being in daily contact with paper, ink and printers! My skin seemed to improve slightly and the random flare ups I was having seemed to go away, but then after being clear for say a week or two, I would wake up the next day and my skin would be swollen, weeping, and burning again (just like today!).

My partner decided he would just google some key words and see if anything different came up instead of researching ‘eczema’ and ‘colophony’ etc. That is when the EUREKA moment came! He stumbled across a blog of someone going through TSW (Topical Steroid Withdrawal) and the similarities between my problems was just uncanny. I then started googling TSW and found Red Skin Syndrome and this particular website http://www.itsan.org which just seemed to FINALLY give me some answers to the pain and discomfort I have been suffering with for so long.

Here’s what ITSAN list as the symptoms of Red Skin Syndrome (which occur after you stop using topical steroids)…

1. Red burning skin. This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It may take weeks for the red arm/white palm to appear as the redness spreads. I have certainly suffered with this especially on my face and neck. It has a weird cut off line that appears almost like I’m wearing a mask. It is very painful to touch and feels like severe sunburn!

2. Unbelievable extremely intense itching. Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth. I have fits of extreme itching. I admit I am terrible at controlling it and often can’t stop myself even if I know I’ve cause myself to bleed from it. It feels like an itch under my skin I just can’t reach and I even have bruises on my thighs from itching so hard. I don’t even realise I’m scratching sometimes, until my partner points it out and attempts to stop me itching!

3. Shedding or flaking skin. Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off. Oh blimey yes, the flaky shedding skin. It’s just horrible. On my clothes, my bed linen (I even remember someone at my old job commenting the photocopier was covered in flaky skin one day that was so highly embarrassing!!!!)

4. Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW. My face certainly swells up and I get terribly swollen eyelids and surrounding areas. Also my ankles swell easily if I’ve been sitting down for a while but not sure if that is connected in anyway!?

5. Oozing skin. Ooze may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried. Another yes! Especially on my chin, behind my ears and on my legs and feet. Dermatologist swears it’s infected eczema and gives me antibiotics which never seemed to work oh, and stronger topical steroid creams!!!!

6. Itchy skin. The itch is unbelievably intense and feels like it originates under the skin. Yes, as stated in #2!!!

7. Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch. Yes! As stated in #1!!!

8. Eczema-like rashes spread from area of skin that was originally affected by eczema. You may experience hives, very dry skin, itchy skin, deep cracks, or tiny cuts in the skin even in areas where topical steroids were never used. The skin is one organ so when one area is medicated, it can affect all of your skin. My hands are constantly cracking and splitting these days, and my skin goes through periods of being extremely dry and cracked.

9. Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills. I do suffer with freezing cold feet and I have to say when I’m outside I can get cold quite quickly and find myself shivering easily.

10. Exhaustion. I can sleep 12+hrs a day, and still feel tired. I always thought it was because I was just a lazy bitch!

11. Insomnia or difficulty maintaining a normal sleep schedule. I do have some nights (probably once a month if that though) where I just can’t sleep at all. But I don’t find it hard to sleep generally.

12. Loss of appetite I love my food, I am overweight so can’t say that this really effects me!

13. Very, very dry skin that has the look and feel of plastic. Yes, it’s again mainly on my face where it becomes extremely dry and then almost plastic when it’s at it’s worst.

So! As you can see, I’m pretty sure this is what my problem is, now I have to face the long journey ahead of battling and overcoming it!

I have thrown out all my topical steroid creams, and today is Day 1 of TSW. I am going to try and keep this page updated with my progress and I think it will also act as therapy for me in some ways! I am not medically trained and this is not a page offering medical advice but just one eczema sufferer’s journey to finding a way to overcome the pain (both emotionally and physically!) caused by this stupid condition!

I will be posting pictures but will always do so at the end of my blog so anyone with a sensitive stomach can avoid looking!!! 😉
Examples of my skin over the past couple of months…

 

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Please feel free to get in touch and let me know if you have any tips or tricks to help me along this journey! 🙂