I think you’re all so damn awesome

Have you got steroid induced eczema? Are you smack bang in the midst of withdrawing from topical steroids?  Then I have something really important to say to you……

YOU ARE AMAZING.  YOU ARE SO INCREDIBLY BRAVE.

Take a moment to remember how far you have come and the tenacity it took to get here.  It is such a grueling journey that spirals you through hell on earth.  But you have walked it and you will keep on going because you can do it.  If it takes tears and anger and cake and depression sessions in bed, then that’s what it takes.  If it takes bandages and endless baths and takeaways and sleeping pills, THEN THAT’S WHAT IT TAKES. If it takes wheatgrass shots and no moisturiser and candy crush and a sugar free diet then that’s what it takes.  Keep doing what it takes for you and what keeps you as comfortable as possible.  (I am aware that comfort is hard to obtain and not an adequate word!)

To start this journey takes courage – to stay on the path takes guts and a willpower previously unknown.  So I want to acknowledge your persistence, determination and resolve.  Go look in the mirror and congratulate yourself for getting this far.  YOU ARE ABSOLUTELY AMAZING!!!!

And if you are a parent who has to support and watch your child go through this, I think you are even more brilliant.  Really, I couldn’t imagine watching my child suffer this much, I have tears in my eyes just thinking about it.  So thank you. Thank you for the courage to help them though such awfulness so that they can have a better life when it’s over.  Thank you to all of the parents, partners and carers for the sleepless nights you have endured, the heartache from seeing your loved one in pain and the patience to help us through each grueling hour.

One day it will be a distant memory. One day soon we will be healed.

Love Ruby Red xx

Five month progress

I have just finished up the fifth month of this journey and progress is happening, although it’s never fast enough!  I am so grateful to be out of the worst of awful pain now though, and the good days are much more frequent.

So what has improved?

  • Swelling in my face has gone down significantly, legs still have fluid but it is not painful.
  • Swollen glands are no longer an issue and generally not sore
  • Redness is minimal on most parts of body but persists on face, breasts, inside of arms and legs
  • Burning sensation has all but disappeared.
  • Eyes no longer constantly weep.  Deep splitting around eyes and lips has completely cleared up, which was terribly sore.
  • I have full range of movement, skin does not feel like it will tear.  It can still hurt with movement but it is not incapacitating
  • The itch only drives me insane 2 days a week and not 7!
  • I am working a few days a week and my brain is clear enough to start studying
  • I am sleeping in bed now most nights!  I still wake up for a couple hours many nights but can generally get back to sleep.  Sometimes I use a sedative antihistamine and herbs, some nights I don’t need anything!
  • Skin continues to produce its own oils as I am not using moisturiser.
  • Weeping skin has almost cleared completely!  A few spots persist above my lip, eyebrow, ears and jawline, but the patches are smaller and weep less frequently!
  • No shakes, no chills, complete ability to regulate my own temperature.
  • Nerve zinger sparklers have disappeared and I have stopped jumping at the most ridiculous things – like someone opening a window or shutting a drawer.  My nervous system is way more stable and I credit this to a herbal nerve tonic I’ve been taking. I ran out temporarily and some of the mild symptoms started to return.
  • Showers are still painful and uncomfortable but only face and forearms now feel like the water is acid.
  • In general there is no more raw skin on body.  Pain is generally from the lots of cuts/grazes/scrapes.  My skin is now longer sensitive to the air, soft fabrics etc.
  • My voracious appetite has gone back to normal.  I can also get through the day without carbohydrates for the serotonin boost if I need to.
  • I am aware I am flaring but am functional through most of it, whereas before I was house and couch bound.
  • The little things – I get out of bed without lying there scared to face the day.  I can get dressed without whimpering.  I can prepare myself food day in day out. I can take my kids to school.  I’ve started venturing out into the world a little more.  I don’t rely on anyone to drive me places now, I am always ok to drive.

What am I still struggling with?

  • Well all of it really but as mentioned above the symptoms are remarkably reduced.
  • ANXIETY.  This if anything has gotten worse.  I have less major breakdowns but the constant gnawing anxiousness effects my day to day living significantly.  I am having two to three panic attacks a week.  My next video will be on this topic.
  • Slapping my face.  I still do this when I am emotionally and physically stressed.  I also do it to stop myself from itching my face nor when my face is weeping, it distracts me from that awful sensation.  Bit of a catch 22 though, the constant slapping exacerbates the facial wounds and therefore weeping.
  • Flaking skin.  I’ve really had enough of this now.  I know it is less than when I was constantly flaring by at least a third, but all of these symptoms are relative – so in the midst of pain, flaring, shedding, weeping skin – it still feels awful!
  • Hair still feels like it is falling out but much less so.  Some of eyebrows still missing but are growing back.
  • The effect on my partner.  It is terrible knowing he is burnt out from all of this.  I am still hard to be around a lot of the time, mostly because of the anxiety – it is truly draining.

TODAY IS DAY 154.  Logically I am very happy with my progress, I know I am doing relatively well.  However we all like to think we are going to be the exception that is healed by six months or nine months and my heart has definitely been holding onto that.  I still have times multiple times a week when I am in despair and so desperately want this to be over.  Everyone keeps telling me I look so much better (and I absolutely feel up to five times better than I did) but it is hard to see the progress myself when I look in the mirror.  Here are some photos of the progress on my face.

Day 7

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Day 124

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Day 132

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Day 154

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  Will get there eventually.

Up late with Ruby Red

I’ve just managed to squeeze in two hours of glorious slumber.  Woke up tearing myself to pieces and then unable to get back to sleep.  And so is the nature of this beast.  These nights are hard, painful and oh so lonely. 

For the most part I am positive about this journey.  I know that I will heal, I have done it before.  I am grateful to know the cause of my eczema and that I will never use topical steroids again.  But there are some days that this shit seriously grinds you down.

Pain

Sleep deprivation

Itching that will drive you stark raving mad

Helplessness

Anxiety

On these days The Massive Pit of Despair just opens up her gaping cavernous mouth and swallows you whole.  And it’s a horrible place to be.  Some days I fight and fight and fight to get out.  Some days I surrender and wallow in the depths of her.  Some days I feel if Death were to take me, I would welcome him, I would welcome peace.

But still my eye is on the prize.  Somehow all of this pain and misery will be worth it.  I picture all of the things I will be able to do with healed skin. Swimming, dancing, being in the sun, concerts, playing in the park with my children. 

Sometimes I even manage to feel grateful for the lessons this journey has taught me.

It doesn’t stop the tears and it doesn’t stop the pain but it does get me through another late night. 

Month 2.5 Ramblings

Tis the season to be itchy!  I know a few of us have really struggled with itch attacks over this period and my best guess is it’s food related along with a healthy dose of social anxiety!  I decided not to venture out on Christmas day but I did indulge in the very best buttery roast potatoes and sweet potatoes.  And cherries.  And I paid for it.  I had a massively intense itch attack that night and couldn’t sleep.  I find it very interesting that itching is also more pleasurable/orgasmic when I deviate from the diet I follow which you can check out here. 

Anyway that experience aside I am doing a bit better than the first few weeks.  The burning and redness has completely gone except for the insides of my elbows and forearms.  My skin is no longer tight or any drier than it would have been if I was still using an emollient.  Absolutely no pain from dryness.  I mainly just have sore stinging/burning skin from the scratching and it is only sensitive to the air once a week now rather than several times a day. 

Also one side of my face has been giving me grief with big open sores and lots of weeping.  The face and area around eyes and mouth are very split and struggling to heal because I still slap my face when I am stressed and anxious.

I am honestly stoked with not having to use a moisturiser or emollient.  My skin is a lot tougher and not using them really has helped with managing redness and itching.  My clothes and bedsheets no longer smell like stale oil!  Huzzah!  And on some days I can tolerate more skin to skin contact which has been really comforting.  Now if I could just heal up these sores!

Now I’m not partying this New Years but if you are, there is a brightside – at least you’ll be wide awake!  Those hours after midnight are our domain!!  May 2014 be a year of healing.  Journey on warriors.

Love Ruby

I know you’re in pain …. but what does it feel like?

This video is designed to show your loved ones to help them understand your pain.

It is hard for people who haven’t been through tsw to empathise because they can’t
possibly understand how overwhelming the pain, sensations and discomfort in our bodies are.
The longevity of the whole process impacts us (and them) so significantly. Hopefully this video will help them to understand if you find it hard to explain.

I brushed my hair and used dim lighting, as to not scare them away.

*****also here are another two super annoying issues that come part and parcel – I forgot to talk about them on the video.  Good thing too or you’d all be stuck watching for a freaking hour!  Sorry about my inability to be concise!*****

INABILITY TO REGULATE TEMPERATURE.
Fortunately this symptom didn’t last too long for me but it is like you would imagine from a recreational drug withdrawal – shakes and chills and shivers galore. Even though our skin is burning on the outside on the inside we are shaky and so so cold! It is awful because you want to go in the sun (can’t – red raw skin will burnnn) or rug up (can’t – irritates/hurts red raw skin and gets realllly hot and itchy.) Frustrating!

INSOMNIA
All of these uncomfortable and painful symptoms, along with the steroids putting our adrenals out of whack, mean that it is difficult for us to sleep.  SO when you throw sleep deprivation into the mix we become a little, well, irritable to say the least. When I am physically and mentally exhausted of course I feel the pain more and of course there are more tears. One of the things we all look forward to at the end of this journey is a full nights sleep!!!!

– Over and out –