alopecia areat

Out damn spot. . .

Howdy folks

Can I start by saying that – the reason I started this blog was to:

“post pictures and share stories of how I’m getting on with alopecia areata as I want to be a positive voice for a not-so-positive type of hair loss”.

I was sick of hearing horror stories and reading depressed people on blogs who (in my mind at the time) were obsessed with the reason for their alopecia.  I thought that their quest was an all-consuming, doomed crusade.

The above quote was my mission statement when I began the blog – but I failed to realise I actually was (and to an extent still am) one of those obsessed people – trying to work out ‘Why me’?!

What’s happened over the course of the few years I’ve been blogging is that I’ve started to dread these confessional moments – so much so that recent posts have been few and far between. I didn’t want to jinx the fact my hair was coming back by talking about it – and I didn’t want to sound like a whiny obsessive.

BUT – here I am -owning the fact that I am a whiny obsessive – at times. And that’s cool – I mean – my hair is coming out in patches across my head for f*cks sake! So I’m going to cut myself some slack, stop obsessing about obsession and get you up to speed.

I wrote the following blog post yesterday and I talk about my newest obsession – SPOTS. . .

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Last time I explained that the patches are peeking through again. What I failed to mention was that this time they’ve been accompanied by some other weird affliction – hives/spots/urticaria whatever you wanna call it.

Spot the difference

This started in January 2016 when I noticed a few red spots on my hand. I brushed them off as just wee spots or maybe contact dermatitis. However – over the past few months  – as my hair has been falling – the spots/hives have been coming back and spreading all over my body with an almost daily regularity.

 

This isn’t anything new – I have always had seasonal bouts of skin flare ups – as most folk do – prickly heat/heat rash and a wee bit of eczema occasionally. However – as this has coincided with my second bout of hair loss – my frantic mind overtook my sensible one and I started becoming reacquainted with the manic Google search. Worst mistake ever.

In-between protracted google searching and obsessing over the placement of dots – I kept badgering my doctor to get me referred to a dermatologist for both my alopecia and this new skin issue.

I finally got an appointment last week at the dermatologist – when I arrived I had NO spots – typical. I did have the above photos on my phone – which I showed her. She diagnosed Cholinergic Urticaria. So that’s a double whammy of alopecia areata and cholinergic urticaria.

Why is my immune system such a twat?

Cholin-er-what-now?

Sometimes referred to as heat bumps, as the rash appears as very small – surrounded by bright red flares.

What causes cholinergic urticaria?

A rise in core body temperature resulting in sweating causes the rash in cholinergic urticaria. Common triggers can include:

  • Exercise
  • Hot baths/showers
  • Emotional stress

Argh – stress rears it’s ugly head again as a potential trigger 😦

Obviously as my alopecia’s back & this is happening – I’m now stressing out more about both of the above – a vicious cycle of anxiety is occurring – and whirring. My already strung out brain is wondering if I have literally brought all of this upon myself – with the aforementioned ’emotional stress’.

So what am I going to do?

Firstly I’m going to deffo STOP obsessing and googling ‘hives‘, ‘red dots on skin‘, ‘urticaria‘ and all the rest every five frigging minutes – we all know where frantic googles lead…usually to a diagnosis of cancer or some other terminal, tropical, incurable disease.

I’m going to try to chill the f*ck out – on a daily basis – this applies both at home and work. Easier said than done but I have a few ideas:

How I’m going to chill:

  1. I’m going to try to start a daily practise of mindfulness  – even for just five minutes – every single day
  2. I’m going to start going back to Bikram Yoga – I went for a few months last year and loved it. I haven’t been for a while and am thinking it might help
  3. I’m going to keep exercising 3 or 4 times a week
  4. I am going to try and write more on this blog
  5. This is the hardest one – I’m going to try and cut down on the alcohol and processed food. I generally eat a healthy, vegetable and protein heavy diet but I do like the regular beer/wine/gin.

 

So what am I going to do if nothing works?

If, after 3 months (September 2016) none of the above help my current situation (spots and patches) – I’m tempted to go back on anti-anxiety medication – to stop the constant whirring thoughts and chatter that occupy my brain during most of my waking and worrying hours. Thoughts that are either taken up by spots or hair loss. What an exciting combo – spot and patch sound like a pair of low-rent strippers.

I’m having a daily battle with the should I – shouldn’t I. Maybe the anti anxiety medication will stop the hives and/or alopecia – or just stop me worrying about both.

Here’s hoping that in 3 months  – I’ve calmed down and either gotten used to being spotty and patchy – or they have cleared up.

I will, as ever  – keep you posted. Give me a shout if you want to chat or if you have any advice on the above.

Cheers

Reece

 

 

my scribble

Practice what I preach?

It’s time to take heed of my own advice – as some of you who follow this blog may know – I recently started growing my hair in as it has started to come back all of a sudden.

Not yet ‘full circle’ – damn it!
A strange thing is happening – some people who got to know me P.A. (Post Alopecia) now imagine me as always having a bald head or a fair complexion. Which is crazy to me as I have always had really dark black hair.

When the hair started to come back I thought “Ah this process is like a circle (cue ham fisted analogy…) I am coming back to a full head of hair – full circle – onwards and upwards. The circle analogy also worked when analysing my actual hair or lack thereof – the ever increasing/decreasing circles.

Here is where my circle analogy works – no really:

I conveniently forgot that a circle is the same shape on both sides – to get from one to the other  you follow the same shape and in my case – to go from no hair – to growing more – I am experiencing the same feelings. This isn’t great news.

Jesus that was laboured! 
Apologies – maybe my wee doodle will help explain what I’m not articulating that well…
my scribble

Circles! That appear as ‘missing patches’ and the trajectory of feelings you go through. From bad to better and back again

I now seem to have regressed to a state of embarrassment and acute paranoia as the remaining holes (or circles if I am to flog this damn ‘circle‘ related analogy) seem much more visible thanks to the abundance of reappearing black hair – highlighting the fleshy pink islands of baldy skin.
top of a head recpvering from alopecia areata

March 2015


Some recent comments from colleagues and folk I have met since having a shaved head:
  • “I can’t get over how dark your hair is”
  • “I could have sworn you were blonde”
  • “Ooh I am going to have to get used to the new you”
A couple of people haven’t actually recognised me or done the dreaded double take. Which happened ALL the time when I was losing my hair – especially when I had just shaved it off and had zero eyebrows.

My AA meetings
Some people I see regularly didn’t even know I had alopecia and (I hate to admit this) but I have started to revert to my old stock ritual of blurting out “I HAVE ALOPECIA” added as a tag on to any conversation with a person I suspect is wondering what the f*ck is going on with my hair.
My justification is that I am making people feel more comfortable but I know it is really down to low self esteem and panic that they may think I have mange! 🙂
How am I dealing with this?
I have gone back to my old faithful wardrobe of hats – detailed here and seem to freak out when I have to walk around sans hat! Which is every day at work 09.00 -17.30.
I walk to the shops at lunchtime with beanie pulled firmly over my head – not usually an issue with the bleak Scottish weather – though today was sunny, I had a wooly hat on – a sweaty head and decided -TAKE YOUR OWN EFFIN ADVICE!!!
As a result, I have been thinking about the advice I have given over this blog and to many people who have emailed me. I have just read through all of my correspondence from you amazing blog watchers and re-read all blog posts, to try and take heed of some of my own advice.

My advice – which I need to tackle ‘head’ on:
  • Walk tall and let people look – They can look and think what they like, their stares or opinions will not impact the growth of my hair BUT letting potential stares worry me COULD.
  • Stop worrying about the hair – Worrying is not a valuable past time – especially when worrying about an auto-immune condition that may or may not be triggered by stressful situations.
  • Stop running my hands through my ever increasing head fluff (and waiting to see hair come off in my hand) My hair is not falling out like it was so I need to STOP looking for something to be sad/worried about.
  • Stop staring in the mirror – My reflection isn’t going to change in an instant and staring at something for long periods of time leads to obsession and distortion. Try staring at your nose in the mirror for a long time and you will see what I mean!

 “Don’t spend time beating on a wall, hoping to turn it into a door”

Coco Chanel

Everyone has their setbacks and I feel I am now in a similar process (looks wise) as I was when I took the decision to shave my head. There are patches of missing hair and I am in two minds whether to shave it all of again or carry on growing it and seeing what happens.

shaved head with alopecia

My hair after I first clippered in 2012

March 2015

March 2015

What I am planning to do:
Having a shaved head is easier in a way as people just assumed – as above – that I was balding, blonde or they knew I had Alopecia.
Growing back the hair and the visual effects I see (or imagine others are seeing) are dredging up the same feelings I had pre head shave but as stated earlier – I am going to keep on trucking and see this through.
Last time the circles were expanding – this time they are slowly decreasing – so I figure that in a few weeks, the remaining patches will fill themselves in slowly over time.
Whatever happens I will keep you all posted! And accept my apologies for the circle analogy I tried to foist on all of you!
Thanks everyone for sharing your similar stories, words of encouragement, your images and best wishes.
Cheers
Reece

Addendum:
I am thinking of adding a forum to this blog so other people can share their stories and speak to whoever else they want to. It has been cathartic, extremely helpful and so unbelievably positive chatting to you all so far and I would like the many people who have emailed me to have an easy to use, open network of communication from which they can reach out to other people in a similar situation for advice or support.
Let me know what you think and I will get a WordPress plugin for forum functionality.