coping mechanisms

The ‘monochrome leopard’ look

The familiar pattern has returned.

When I say pattern, I mean the loss and regrowth – but I could just as easily mean the holes on my head where hair should be. This time I have done something slightly different to deal with the oh-so familiar cycle of hair loss.

Covering up

Since mid 2018 – I’ve been hiding (hair loss) in plain sight. I’ve been using a spray and fibres to cover patches – which help me feel more comfortable in everyday life. Times such as:

going out somewhere
heading to work
standing in a queue
sitting in front of someone on the train

Times where you just want to blend in and deal without the paranoid feelings creeping in that people may be looking at your strange hair pattern.

Why did I do it?

I always thought I wouldn’t do this and ’embracing the bald’ was the way forward for me – this was also the reason I shaved all my hair off the first time. But this time, with experience – I knew that every time I shaved it – the bald patches would be really visible due to my dark hair regrowth – so I decided not to.

I only applied to the huge patch/Friar Tuck spot in the front of my head and (very occasionally) on the larger patches at the back of my head. Here’s the huge patch which has been growing and actually changing in size over 2018/19

August 2018

The middle patch in August 2018

The spot remained the same – and covering it helped me feel more confident and able to walk around without feeling like people were staring at the spot in the middle of my head.

June 2019

Still hanging around in 2019

As you can see – it didn’t budge in 2019. And it is still here in 2020! However it is slightly different this time – more on that later…

How I did it

If I wasn’t working, going out or heading off somewhere – I didn’t bother spraying anything at all. I feel comfortable with my family and friends seeing the patches – and if I needed to go out and couldn’t be bothered spraying – I could always wear a hat if I really wanted to.

I used a spray and fibres and it looks like this (This post is not sponsored and unfortunately I have paid for every item I have bought). Though I bought the ‘black’ version, not the dark brown ones as pictured.

If I was going somewhere or wanted to cover the patch then I:

styled my hair with wax
sprayed the black ‘disguise spray’ onto the bald patch
dropped some fibres over the area
finished with a fixing spray (strong hairspray)

– et voila. It seemed to work.

Here’s a video of the daily spray – it takes under a minute

How has it worked for me?

Well nobody has ever noticed the spray – or were too polite to say.

As far how I felt using it – most of the time, I was fine with it – unless I was:

under a mega bright light
already feeling low
caught in a sudden downpour of rain

And even when I was caught in the rain – it didn’t ever ‘run’ or stream down my face.

The times I felt uncomfortable were few and far between and it just allowed me to get shit done without obsessing about my hair – which lets be honest – I (and anyone else reading this) has probably done enough of over the years.

It allowed me to give my brain a break for very little effort.

I was sceptical at first and didn’t want to use it and have constantly been asking my partner and friends – is it time to shave it all off? And they keep saying ‘No’.

Abi and the eyebrows 🙂

But these were the same people who encouraged me to use that god awful eyebrow pencil and we all know how that turned out… WHAT WAS I THINKING?!?!?!?

So what’s happening now?

I’m posting now as I’m aware I have been consistently losing and gaining hair. I have been spraying and didn’t really want to give a depressing update to anyone that follows this looking for hope.

But a number of people have asked how I am doing and wanted an update and some of you who have now become friends keep saying “your hair looks fine in your pics on social media” so I thought it was time to come out with the truth.

I HAVE BEEN SPRAYING THE BALD AWAY

I am still using it when I feel like it – not everyday – though have been reaching a point over the past 6 months where I want to shave it all off again – as I feel like a fraud and just want to be more comfortable in my own skin.

This would then mean shaving my head everyday and I don’t know if I want to do that either.

2020 update

Here’s the big ‘Friar Tuck’ spot with white regrowth – at the end of January 2020

What’s Next?

I will continue to use the spray occasionally, until either the hole finally closes up or I get too pissed off and shave my head. Either way – I will try to update you in real time.

I have noticed that some of the hairs in the spots I was spraying are actually growing back – but white. I now have an ever increasing collection of white patches all over my head. Have a look:

Left

centre

Right

Now I can’t be too sure if this is just normal ageing and I’m getting grey. Or is this the non-pigmented hair coming back before it turns black again (which is what happened last time).

I also can’t be sure that the huge spot isn’t just a part of male pattern baldness at the age of 42 – but it is a very alopecia sized spot and there is grey hair growing back in there. so who bloody knows?!

Anyway – that is my very overdue update for 2020. I’m happy to carry on looking like a monochrome leopard – for now.

Photo by Adriaan Greyling from Pexels

Yusuf’s story

As I explained at the end of my last post. I want to share other’s stories with you. This one comes from Yusuf, a business owner from London who wanted to share his alopecia journey. I’m sure you will enjoy reading it as much as I did.

A man sat at a desk with slight alopecia on left eyebrow

Yusuf at work – can you spot the alopecia?

When I was 34….

It all started in 2015 well, June 23rd 2015 to be precise, a date imprinted in my memory and my iCal (more on that in a bit).

I woke up one morning with a semi-circle missing on my left eyebrow, at the time I didn’t think much of it, I just went about my day, telling myself nobody would notice and indeed, nobody did.

About a week later, semi-circle still there I found myself on google (they say the devil makes work for idle hands!)

Googlemania

“over night bald patch”, “eyebrow suddenly fell out”, “why is my eyebrow falling out?” were some of the searches I typed in.   While many reasons came back there was one that kept on appearing: Alopecia Areata. “What?!”, ok more specifically: “What on earth is that?!”

So that was the next fateful search.

Imagine a Hollywood film, the slow motion typing, the dubbed clicking sound and then the inevitable search results.   With it my heart sank….   The first results came from sites like NAAF…. “An Autoimmune condition, Some people lose some hair, others lose all their hair including body hair”   “Some”?? “Others”?? I’m a computer scientist! I need statistics, I need figures, and I desperately was not getting these from NAAF.

Forums

My next port of call was Alopecia World Forums and that was when it really began to sink in, and with it depression and anxiety.   I tried to bargain with myself, I have no other patches, nothing on my scalp, it can’t be alopecia areata, I don’t want to lose all my hair.

I mentioned my iCal earlier, because as well as inputting the day I first noticed the eyebrow, I started more inputs: Predicting the day more patches would fall out in line with what I read from stories in Alopecia World.

I entered what could only be described as grieving, didn’t want to know anything from my wife, my young son, my business, my krav maga group – basically anything that gave me any fulfilment in life.

Instead I found myself shut away, constantly google searching people’s alopecia stories, and they all seemed have a version of “It started off as a patch and quickly turned into AU (Alopecia Universalis …. where you have zero hair anywhere on your body)

Doctoring the facts

I was scared to go to the doctor as I didn’t want my self-diagnosis confirmed, but I was dragged along by my wife….

He looked at my eyebrow and examined my patch free scalp and look puzzled, his exact words were “It could be fungal, it could be alopecia areata, my working diagnoses is alopecia areata…”

My first thought “Why is he so calm about this?! I’m about to lose ALL my hair” I vocalised this immediately to him. He looked at me with a puzzled expression

“This maybe as bad as it gets”

I wasn’t listening….   I persisted: “I go online and all I see is that isn’t going to be as bad as it gets, this is the start of AU!!”   (I should add he’s a very good doctor in the ‘twilight of his career’)

He very calmly said to me “I’m yet to treat anyone with alopecia areata who’s gone on to lose all their hair”. I wasn’t listening, I left his office in a bit of a depressed daze.

More diagnosis

Three months passed and slowly, my eyebrow continued to shed, in a diffuse type fashion. Leaving me with a patch missing in the middle of my left eyebrow (As much as I love scarface, I didn’t love the look one bit!)

Having had no other patches fall out anywhere else I desperately was still looking for a ‘get out’

‘It has to be fungal!’ I kept telling myself, I was in Indonesia a few weeks before this all started I must have some sort of exotic fungus! Back to the doctor I went…

I think more worried about my panicked state than my hairless patch he prescribed my anti fungal pills. I dutifully took them and began to see slight regrowth!

REGROWTH

The regrowth was very fine and slow… and it kept my anxiety down for a few weeks, until it came back with a vengeance!

It was now December and I finally decided to visit a dermatologist (looking back now, it was more of a bargaining to myself, regrowth had started so I was hoping it still wasn’t alopecia).

FUN-GUY

£250 for a consultation, She looked at my eyebrow and said: “There’s regrowth, no exclamation mark hairs, 50/50 fungal or Alopecia Areata” She took fungal swabs which will be back first week of new year.

Convinced it was fungal, I felt happy and left.

The New year came and my results came back: no sign of fungus! By now my eyebrow regrowth was starting to come in, so I put this whole ordeal to the back of my head (not forgotten, just not thought about every moment of the day)  .

My eyebrow grew back, no other patches appeared so still not entirely convinced I have Alopecia Areata I just put it down to “one of those things” and moved on with my life.

Alopecia II – the revenge

When I was 36….   September 8th 2017 to be precise, again a date I really should never forget (unless I want to be homeless! It’s my wedding anniversary, and this one was my 5th)

I was in the bath, with my longish locks lathered in shampoo, when my wife walks into the bathroom (I assure you after 5 years of marriage and together for 8 years at this point, this is not going to turn into literotica!)

“Leave me alone! I’m trying to relax” I said “I’ll be quick, just need to get some…… hold on! you have bald patches?!” she exclaimed.

Resting heart rate suddenly went tachycardic…  She dutifully took some photos with my phone, I could already see in the preview what was to come…  Two bald patches, separated by a CM of hair. One was the size of my thumb print and it’s tiny neighbour (or garden extension as I later referred to it as) about the size of my index fingerprint.

Panic

I got out of the bath, and all the feelings that I had two years prior came flooding back….   This isn’t fungal, who was I kidding? this IS ALOPECIA! and this time it’s on my head, last time I got ‘lucky’ this time I’m going to get AU, those were my thoughts. I began to shake.

I had to goto NYC on business the next day, which was by far the worst trip of my life. I love NYC, I Love the USA, I hate having something that follows me.

My bald spots were on the top right side of my head, very easy to hide, I didn’t even need to change my hair style.

That wasn’t the point however, I ‘knew’ I was going to get more, that I was going to be one of those stories I read on alopecia world “I woke up one morning, all my hair was on my pillow….” , “One day I blinked and all my eyelashes came out….”

Dermatology – AGAIN

From NYC I called my dermatologist back in the UK and arranged an appointment for the day I flew back in, no more burying my head in the sand, this is real now.

On the day I visited her, I was a total wreck! she looked at my patches and her words:

“It’s alopecia areata, it will grow back, but it is likely to reoccur in future”

She was so calm about it! I’d heard of “Keep calm and carry on” but this was ridiculous!

So I opened up to her about what I read on alopecia world and various groups.   In her perfect Oxford Educated english she looked at me and said “Stay away from patient support groups, if you really want to know about the ‘average’ case then speak to medical professionals”

She gave me a topical steroid cream and told me to apply it twice a day for two months and return.   After two months I returned and she was pleased, “You have regrowth and no signs of any other patches!”

The future

It’s been 7 months since that day and while the patches are not completely gone, they have a good amount of regrowth.

A Bit of Background about Yusuf:

Alopecia is his second Autoimmune disease. His first is psoriasis which he has had on and off for over 15 years. It was his psoriasis that let him start thinking more rationally:

Psoriasis is a ‘mild disease’ for 80% of people (official stat!) for me to date it has never been more than a few bits of dry skin here and there. I know two other people with psoriasis, both of which unless you knew they had it, you also wouldn’t know that they did.

I’m also a member of Facebook group called the Psoriasis Association, and if I was a ‘newbie’ to psoriasis I would be petrified. I noticed a pattern most of the posts seem to come from about 2-8% of the same people…. Severe Psoriasis affects 2-8% of patients (coincidence?)

Since the ‘confirmed’ alopecia areata date in 2017 Yusuf decided to delve a bit more into his family history:

His mum suffers from Autoimmune Thyroid
He has psoriasis and now Alopecia Areata
His aunt (mum’s sister) also had Alopecia about 4 times in her life, she developed 2-3 small patches, that grew back. Years passed it would repeat in same pattern

Yusuf’s statistics and hypothesis

Alopecia Areata affects about 2% of the global population at some point in their life, assuming the male to female ratio is 1:1 (ie. equal) this would mean:

In London (population: 8,788,000) – 175,760 have alopecia areata (either active or in remission)
If half of them are women: 87,880 women have alopecia areata

This didn’t ring true,

I haven’t seen nearly 90,000 bald women in London, or nearly 90,000 with painted eyebrows, or nearly 90,000 without even the finest of hairs on their ears, arms etc.

So why are there so many AU people?!

he then found this stat:

“Not everyone loses all of the hair on the scalp or body. This happens to about 5 percent of people.”

Yusuf’s conclusion

I started to think, when things are good? do you think about anything else? no! you’re too busy enjoying yourself. It’s only when things are bad that people really need support, (and rightfully so).

It’s the echoes of those times, that you see online.

I hope I haven’t jinxed myself by writing this, I’m just trying to help, especially those newly diagnosed who are likely to find themselves on google like I was.

This condition is entirely unpredictable and I realise that one day I may lose all my hair too. If you’re a newbie and reading this first of all Welcome to the party! (it’s probably a guest list you never wanted to be on!) but also please remember that should I join those who lose all their hair I have become a statistical deviation and not the norm.

Here we go AGAIN! :(

I’ve been reading through posts on this blog. This is my twentieth post since I started in February 2013. You couldn’t exactly call me prolific. Apologies my posts have been few and far between.

There seems to be a pattern to my subject matter (aside from patchy hair loss). One time I post about how bad my hair is falling out – then my next is about regrowth – then I talk about loss and the following focuses on regrowth. This endless cycle of growth and loss with an upbeat message hammered in at the end has been my signature.

You can view them all in order here.

So is this one about loss or growth?

In my last post – I was yakking on and on about regrowth. I am still having regrowth – especially my chin and facial hair BUT – I also have lots and lots of new patches which I’m not too pleased about. So I guess this actually fits the pattern.

My facial hair regrowth

I grew out my beard (or what there is) over Xmas 2017 when I visited Iceland. As you can see from the picture (taken in the Blue Lagoon) my ‘beard’ is multicoloured and I only have regrowth in certain parts. The white hairs on my chin have been white for 4 years.

White Beard at the Blue Lagoon!

The patches on my head continue to piss me off

I have been panicking since August 2017 that ‘my hair was going’ and I was convinced I would be bald again by the time I turned 40. Well I turned 40 in December 2017 but I still had hair – the Iceland picture was taken just after my birthday in December.

My hair has thinned out considerably and there are patches creeping around all over the place. I keep asking my partner – “Do I need to shave again??” and I’m reassured by him – “Not yet”. I asked my hairdresser recently, who told me to “relax”. This was two weeks ago – since then – the holes have increased and started to join up. Have a look at my current hairline and tell me not to worry…

my ever disappearing hairline – April 2nd 2018

Think positive or think real?

My previous train of thought was – if you think and expect something -(and then obsess over it) you invite it. This belief is stronger when your hair has regrown and isn’t falling out. It gets harder and harder when your hair does start falling out again. As mine is now.

I don’t want to be negative or get lost in a depression like I did when my hair first fell out as I know it grew back and it might again. It doesn’t help when I see hair everywhere – on my desk, pillow, the bath, my car seat – everywhere! I can hide the spots by styling but again – the wind, rain and freak weather is once again my enemy and part of me wants to just own this shit and shave my head.

I am trying to latch onto the fact that new holes appeared (then disappeared/my hair grew back) in January 2017 – as I detailed here. This current period of loss may magically grow in like it did then. BUT my brain keeps saying “No it won’t – look at yourself” and the negative feelings continue to rise.

Even my bloody eyebrow – as you can see in the first image – also has a patch missing. FFS!!!

Why now?

I’m in a really stressful moment in my life – I have gone part time at work – headed back to do a full time masters degree and am generally always really busy and stressed. This may be having an effect on my hair – or it may not – WHO EVEN KNOWS ANYMORE!

I am still taking the LDN, hair goop, vitamins and all the rest but at the moment at least – none of them seem to be working. Maybe it’s just my time to shed and this is always going to happen. It may just be that I am SHITE at managing stress and this is the result. I graduate in October and work is ramping down soon – so – as ever – I will keep you updated and let you know whether this is pure stress or the result of something else!

When am I going to blog next?

I will shortly be posting blog updates which have been written by a couple of people I have met through writing this blog. They are going to tell their story so you can see how they coped and what they went through.

And if I do ‘the big shave’ again – I will record it and upload to the site.

Speak soon

Reece

Symptomatic/Psychopathic. Zombie features.

What happens to you when you feel a bout of something coming on? What’s your tell? The reason you start to panic or brace yourself for the ensuing episode? Mine is the start of my zombie features – a period where I swing between bouts of obsessing over my dry skin and general mania.

The reason I’m asking is because I’ve been thinking about this a lot lately (surprise surprise).

It goes like this – I see a wee red patch of dry skin on my right hand (kind of like stigmata! There is nothing holy about my reaction). Once I notice the patch, a sense of dread courses through my body as I fight my way to the mirror to examine my scalp – looking for signs of inflammation or crustiness. I am generally not happy until I find something, anything – YES. I am turning into a zombie – I knew it.

I Zombie?

A zombie face with half the mouth missing

This – is how I imagine I look when fully symptomatic

The reason I relate my ‘symptomatic’ state to that of a zombie is because they both share similar physical features – such as:

Falling hair
Bleeding gums
Bad breath
White coating on the tongue
Dark circles under eyes
Red, chapped flaky skin

I know all of the above can also be signs of other stuff – an allergic reaction, an intolerance to dairy, wheat or countless other things or simply some sort of infection. I have thought and thought (and thought again) about all of these things – usually on a loop once I notice that bastard patch of skin appear on my right hand.

Mania

The internal reaction to my physical appearance becoming zombie like is usually mild to manic panic. Constant worry and questioning about WHY this is happening, WHAT is causing it and HOW can I stop it?

My obsession with spots are a recurring theme – maybe they are indeed the problem and I have brought all of this on myself. The constant questions my brain asks along these lines are also a clue that I am experiencing ‘an episode’, ‘being symptomatic’ or just having a generally shit time of it.

I find it hard to concentrate at work or in conversation – probably because my brain is busy asking the same stupid effing questions over and over. I also find it hard to make decisions – what to wear, what to eat – total brain fog.

How does noticing this help?

I’m unsure which came first and now which feeds what, but as soon as I see that little red patch or start to feel the other symptoms, feelings or manic thoughts – I try and remember it’s just thoughts, red patches or an inability to make a decision. I don’t let one add to the other and make me feel worse.

I think naming something, realising what’s happening and being prepared is useful – eventually. It takes time but every time one of these smaller things happens – I call it out for what it is – just something that’s happening which isn’t the end of the world.

As I now know what’s coming – just my feelings, just a patch of skin & just my own thoughts – they have less power over me and are gradually becoming easier to manage.

Patchy hair- don’t care

Ok – so that’s a blatant lie. I do care – but I’m adopting a much more relaxed approach to falling hair – when I see it on my laptop, desk or pillow I flick it off and try not to stress about it – most of the time.

What’s changed?

Nothing, I just know from past experience that stressing will not help me in the slightest. I am also trying out my ‘mini habits’ in an effort to curb stress and freak outs. They seem to be working.

The spots

O.K. so the hives/urticaria are still coming and going and I’m unsure if they are caused by emotional stress or intolerances but they remain a constant at the moment.

Is the hair loss following the same pattern as last time?

Nope. It is now coming away everywhere! Last time it was confined to my head – face and scalp. This time my chest hair is taking a beating. Have a gander at this:

The chest

Last time I lost hair on my scalp, I didn’t really lose any on my chest – apart from one wee dot – which as you can see has now spread and had lots of little spotty babies dotted in random places across my chest.

Patchy Chest

My scalp

Alopecia patch

Patches

I keep looking at the patch on my left side whenever I get out of the shower – but the same apocalyptic feelings just aren’t there as much anymore – I give a wee shrug and feel a bit shit but so far I can pat hair over it and carry on with my day. When the day comes – or should I say – if – it comes, I have a handy pair of shears with my head’s name on them. I’ve done it before and have no issue with shaving it all off again.

I do have a few patches on my head but they seem to be minimal compared to the fast spreading ones on my chest. And like I said – I’m really not that bothered at the moment

The good news

My facial hair seems to be returning! Amidst all the shedding, my moustache is making a bit of a comeback. I am not going to rival Tom Selleck anytime soon but it’s coming back very, very slowly.

So I can now have a moustache! Ok it’s patchwork kind of moustache but it’s mine, I grew it and my face feels ‘normal’ again. It’s like I’m 14 again and trying to prove I NEED to shave. I forget it’s there but every time I see it, I have a wee smile.

So I was off work for a full week and didn’t shave. This is the result:

14 year old flashback

Those wee white hairs on my chin have been there since September 2012, when I hoped they would gradually turn black and grow like they used to. They haven’t so far – so I may rock a badger beard in the future – who knows.

Eyebrows

I’m pretty unsure what’s happening with these former caterpillars. I keep thinking that my left eyebrow is filling in a bit and then i notice wee spots of bald across both eyebrows and the panic sets in again. I can deal with no hair but would rather keep my eyebrows and eyelashes this time if possible.

Eyebrows August 2016

The Future

God knows what’s to come with the hair anywhere on my body. I’m heading to Australia, Singapore and Thailand in December so who knows if I am going to be getting my bald head burnt or crossing continents with a decent head of black hair. I’ll keep you posted.

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. . .

_________________________________________________________________

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:

I’m going to try to start a daily practise of mindfulness – even for just five minutes – every single day
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
I’m going to keep exercising 3 or 4 times a week
I am going to try and write more on this blog
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

Hello Darkness, my old friend…The return of Alopecia and departure of hair (again).

No, this post isn’t an homage to Simon & Garfunkel, as lovely as they are. I’m merely borrowing lyrics to highlight my current mood. It’s getting darker – which is the inverse of my hair – which is getting lighter. By lighter I mean patchier. By patchier – I mean – the always lurking alopecia areata is making a comeback 😦

One year on

It’s been precisely a year since I started to grow my hair back in. I shouldn’t whine – I had a full head of regrowth for summer (no sweaty cap or burnt scalp for me) and for my sister’s wedding. In the back of my mind I always knew it would come back (or go – whichever way you look at it).

When people asked me or saw an old photo of me and were puzzled – I’d explain that I have Alopecia – not had. I would never trust them when they said “Really, I would never know”. Such is my paranoia when it comes my hair.

Paris, March 2016

Never really went away

I never had full regrowth, below is a list of the stuff that didn’t properly grow back when my luscious mane did:

My eyebrows never fully grew back to the Brooke Shields/Cara Delevigne caterpillars that they were – but at least I had some – even if it did look like I’d over-plucked
A patch on my chest and trunk – which started when my head hair came back.
I had one patch of (no) hair – above a newly returned grey spot which never came back in (see below)

What am I going to do this time?

You may remember last time I tried a few things? This time I don’t want to radically overhaul my diet (as I’ve been steadily eating healthier foods and upping my fitness levels for the past few months). I gave up smoking – in January and am drinking less alcohol than I ever have.

I seriously believe that my alopecia is either:

a cyclical thing – that I have no control over
it’s triggered by stress – which I do have control over
both

Point is, if I remove or react to stress better, it’s a win-win. I know how mini stressful episodes affect me – I get a racing mind, laboured breath and a tightness of muscle. Whether these mini episodes have contributed to my alopecia or not – I don’t want them. So…

This time, the only things I’m going to do are:

Try (and I do mean try really hard) to calm the f*ck down
Try not to stare at the ever increasing patches of pink skin
Remember to breathe – seriously, I’m making a conscious effort to take big long lung-bucket-fulls of breath – it’s not only good for the soul – focussing on my breath will stop my mind racing about impending baldness

I just need to remember that I’ve been through all this shit before. The ‘worst’ that can happen is actually more of an inconvenience – having to shave my head, facial hair and patchy eyebrows off on a daily basis. It isn’t life threatening and lots of people are going through much worse than me.

I’m away to snort some oxygen and (not) look at my hair in the mirror!

2016 #Alopecia Update

I’m starting this post with an apology – sorry for not posting to all those people asking for an update. The reason I started this blog was to give people regular information and to keep track real time of what was happening with my alopecia. I didn’t keep my end of the bargain but here’s an update – with a possible explanation.

The reason I haven’t blogged as much as I promised

Aside from being lazy, I haven’t updated as much because – my hair’s been growing back really well during 2015 and I didn’t want to go back to my obsessive state by talking – or even thinking about it.

This may sound like an excuse (and it is) but every time I thought “shit I need to write a blog post” – another wee voice in the back of my (now hairy) head said – “nah – just enjoy the full head of hair you have – stop fretting”.

As I said at the start of this post – sorry for that. Here’s the back of my head taken today (January 4th) – pretty much covered – apart from the usual thinning a 38 year old can expect.

Back of my head January 2016

The hair on my head has almost all returned (you can see where it is thinner) – apart from one spot above my right ear, which is covered in grey/white hair :

The shot above showing the grey patch above my right ear is light years away from the photo below – taken almost 3 years ago in February 2013.

Feb 2013

Facial Hair

This has remained pretty static and hasn’t fully returned – here’s a face shot from today -as you can see most of my eyebrows and eyelashes are back but my moustache hasn’t fully returned (no Movember for me) and you can see that my cheeks and chin STILL have the white hairs – which haven’t as yet gone ‘back to black’.

Again – though there isn’t full regrowth – it is hugely improved from July 2013 (below) when I had to razor my head, face and eyebrows everyday.

July 2013

What have I been doing differently?

Nothing – as I’ve said a few times – and to people who comment on various posts or ask me questions – I haven’t done anything drastic or different. I have stopped:

obsessing
staring at the patches
worrying

I’m unsure if this is the reason for regrowth or just the end of this cycle of hair loss – but learning to shift focus from worry and obsession of alopecia has worked for me physically and emotionally.

Unfortunately the flip side of this approach means I have neglected the duties of this blog.

I will try my best to update much more frequently and please let me know if you have any questions, comments or anything you want me to blog about.

Cheers and Happy 2016!

Reece

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…

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.

My hair after I first clippered in 2012

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.

Here’s a video about ME…

I had to create a 2 minute intro video a while ago (for a Digital Marketing course I am doing with Google). I gave this blog a shout in the video but didn’t actually share here. Sorry folks.

Anyway – here it is…

As you can see – I am still ‘rocking the bald’ despite getting almost full regrowth – I am still shaving my head everyday until it all grows back – then I will attempt to regrow my receding hairline into an actual hairstyle!

It’s been a while – will be a novelty buying hair styling products again!

As usual – feel free to ask any questions or send me a private message if you prefer.

Cheers

Reece