balding

at the blue lagoon

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.

at the blue lagoon

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…

a man with alopecia

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.

patches of alopecia

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

Regrowth, regrowth, regrowth

Yes you read it right from my triple title above – my hair is back – thicker and fuller that it’s been in ages. In my last post, I was heading in a downward spiral – in terms of mood and also hair loss – the dreaded patches were emerging again. Well  – they’ve all gone from my head and I finally have 100% regrowth. I don’t have to avoid triple mirrors in dressing rooms anymore!

dressing room

Here’s how I maybe managed it

I’d love to say ‘it just happened’ and grew back like last time – but it never. The truth is I don’t know what’s helped the most as I’ve tried to make so many different positive steps.

I made a conscious effort not to head down the same sad, obsessive path I was on way back when this all started. Instead I took affirmative action. I may have started too many things  – which is an issue as now I don’t know which (if any) are helping – so I’m carrying on with all of them – as long as my bank balance will allow.

Here’s a list of things I think may have contributed to the regrowth – in no particular order:

1. Low Dose Naltrexone (LDN)

I am still taking the LDN every night – 4.5 mg. I have never really had side effects  – I talked about starting to use it here. This costs me £30 ish for every prescription.

2. A mystery potion from the Middle East

When I was in Australia in December 2016, I met someone who told me their regrowth was helped by using a lotion they bought over the internet from a Middle Eastern country. Immediately my thoughts turned to snake oil salesman and the charlatans that I was very critical of in an earlier post which focused on the treatments I’d tried.

Nevertheless I agreed to purchase said lotion – which is pretty expensive. The cost of the treatment is also the reason I’m not name-checking or linking to it here as I feel it’s not ethical to do so. I don’t really know if it honestly works and I don’t want anyone to get in debt because of me, then be upset if it doesn’t work.

If you really want to know the details please message me privately. Though I am in no way endorsing or supporting this product. It is one of the many things I have been doing.

You can private message me via the social media pages that I have created for this blog:

Even if you don’t want to message me – you might like to follow the social media pages anyway 🙂

I paid £400 for a three month supply of this lotion which I was instructed to rub into my scalp every night and wash off the next day. I honestly don’t know if it’s this that’s helping but I’m still rubbing it in every night like a drone anyway.

I have been doing this for around 3 months.

3. Yoga & relaxation

I have tried to make time for yoga as it allows me time to relax and get in tune with my body and mind at the same time. I’ve been practising Forrest Yoga with an amazing tutor in Edinburgh for a while now and it really helps me feel better at the end of a sweaty session!

15253635_10155560724244778_834846904936723561_n

Striking a yoga pose on my 39th birthday in Singapore – December 2016

It’s also really handy as it’s near my work. If any of you ever get the chance – swing by Leith Yoga studio for a class with Janet.

4. Therapy

I think as a result of the years of stressing about being stressed, worrying about hair loss and analysing my thoughts – I’m finally pretty in-tune with myself and tend to realise when my body and mind are stressed, manic and winding out of control.

I can usually feel tenseness in my body or hear the internal chatter building to a crescendo and either loosen up or quieten down to try and combat the feelings that used to spin me out of control.

To help with this – earlier in the year I started talking therapy. I have done this once previously  – 6 sessions recommended by my doctor when my hair first started falling out. This time it’s different – I’m paying for this therapist and can talk about whatever I like.

It’s rare that we get a chance to openly talk about our lives and what has contributed to make us the people we are. From family to work and relationships – everything has an effect and impact on your current view of the world and yourself. I have found it really helpful to be able to discuss all of the above with my therapist. I am going to keep going in the future – but not as regular.

5. Vitamins

I’ve been gobbling a handful of pills every morning on top of the LDN. As I mentioned a few posts ago – the concotion I’m self-medicating with includes the following capsules:

  • Vitamin D
  • Turmeric
  • Vitamin C
  • Acidophilus
hair tonic with phytofol

Hair Tonic

I’m still taking the Chinese medicine – in the form of a capsule with Phytofol -this herb is used to nourish the liver and replenish Kidney energy (Jing) to promote healthy hair follicle function.

So what’s next?

I’m too scared to stop using anything right now. I think I’ll wait until my ‘big birthday’ is over in December and wean myself off the LDN and mystery lotion. Am going to keep up the yoga, therapy and vitamins as they are fairly low cost compared to the other two.

I’m currently really happy – loving life and quite chilled out. As I’ve always said in this blog – I think my happiness and contentment is contributing towards my regrowth more than anything I’ve listed above – however:

  • my mood may not have been so happy had I not had regrowth
  • regrowth might not have happened had I not proactively taken all the steps above

I haven’t a clue what’s working but I stand by every decision I’ve made as at least I’m doing something and I’m so glad I don’t feel the need to obsess about falling hair at the moment.

I move house in September so we shall see if I can maintain this low stress lifestyle.

I’ll keep you posted.

Reece.

A zombie face with half the mouth missing

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.

alopecia areata patches on my chest

Patchy Chest

My scalp

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:

half moustache regrowth from alopecia

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 close up

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.

 

 

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.

IMG_5670

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)

grey bit

 

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!

 

 

 

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.