.. that's VITILIGO reversed!
Having just returned from 2 weeks holiday in the sunshine (which, prior to my repigmentation, would have been an endurance test) I realise I had prepared this post before going and completely forgot to share it with you!
When I wrote it I was obviously still in festive mode, after playing various word games over the Christmas period, and came up with this acrostic message for all my #vitiligo-friends this January. It's a bit of fun, but sincerely meant :)
This year I am looking forward to continuing my own success at keeping my vitiligo at bay and to helping as many others as possible to achieve OGILITIV too!
I plan to add more well-researched vitiligo solutions to Vitiligo Store and look forward to corresponding with old friends and new, sharing tips and experiences and continuing to be part of the growing community of people around the world who are determined to make life better for everyone living with vitiligo.
The Vitiligo 12 Days of Christmas
As a child I used to lie to Father Christmas each year. When my mother took me to Santa's Grotto and I was asked what I would most like for Christmas, I would reply “a Tiny Tears doll” or some other must-have toy of the day. I was too embarrassed to tell him that what would make me happier than any plaything would be to wake up on Christmas morning to find the white #vitiligo patches on my skin had disappeared. So, for anyone who feels like I did, I dedicate my #Twelve-Days-of-Christmas song to you!
I'm sure you know how the famous cumulative song goes. You start with day one and each time you move on to the next day you add the previous days' gifts too so that each new verse is longer than the last. (The original text above will remind you how it works if you have forgotten.) So I have just listed the days and vitiligo solutions in reverse order so you can construct the song for yourself!
On the first day of Christmas my true love sent to me...
Some Boost capsules under the tree.
On the second day ... etc.
Now, find yourself a quiet space somewhere (unless you are a real extrovert) and sing away... it really is best sung aloud!!!
But what does that have to do with vitiligo?
Happy #Mother’sDay to all Mums out there! If you live in the UK you will know that this Sunday mothers across the country will be waking up (far too early probably) to a very well-intentioned, but possibly unappetising, breakfast tray, which will be duly admired with much ooh-ing, aah-ing, thanking and feigning surprise. The contents of said tray – with the exception of the single daffodil in a jam jar – must then be consumed with enthusiasm, even if the cornflakes are a bit soggy and the toast has had a layer of charcoal carefully scraped off over the sink. Of course, if your children are too old, or too sophisticated, for this scenario to ring true you are just as likely to be presented with smoked salmon and eggs, scrambled to perfection, served with a glass of bubbly at exactly the right time in the morning and will not be allowed to do a stroke of work all day. You will almost certainly have cards to read, telling you that you are the best Mum in the world, and maybe gifts to open too. (Do I hear anyone muttering “yeah, right!”?)
Whether the day is a delight or an ordeal depends on too many variables to mention here but one thing is for sure: Mums everywhere deserve to be appreciated and spoiled. Ideally, every day of the year would include some appreciation for everything a mother does for her family day-in and day-out. But, of course, we all know that familiarity breeds … well, hopefully not contempt but certainly being taken for granted. So setting aside a particular day in the calendar to make a special fuss of Mum is definitely something to celebrate.
I have to admit, though, that I do find the #over-commercialisation of this celebration a bit sad because its simple and touching message is often lost amid the hype and mounting pressure to spend hard cash on doing absolutely everything the TV ads tell us we should. And, BTW, if you think Mother’s Day has become over-hyped, take a look at this website which lists some of the other commemorative days the retailers would probably love for us to celebrate - like International Ask a Question Day (I can think of one… Why?) While I am on the subject, there are some really wacky commemorations that you might want to surprise your friends with, like National Two Different Coloured Shoes Day (May 3rd, if you were wondering). You’ll find 75 of these silly special occasions here – definitely worth a laugh.
Apparently Mother’s Day has been celebrated since the days of Ancient Greece and Rome. So it's certainly nothing new. Here in the UK Mother’s Day started out as a date in the Christian calendar (it falls on the 4th Sunday in Lent) and usually involved nothing more than the pastor extolling the virtues of motherhood in his sermon and all the children in the congregation being given a flower to hand to their mother on the way home. I know the world has moved on several billion light years since those days but I do feel some nostalgia for their sincerity and simplicity. For example, back then, the commemoration took place on one day. Now, I notice that advertisers are referring to “Mother’s Day Weekend”, obviously hoping to encourage an extra day’s spend on treats, outings and gifts. I certainly don’t begrudge any Mums the VIP treatment but it does seem to come at an ever-increasing price.
Interesting though this all is, you may be wondering what it has to do with vitiligo which is, after all, my usual blog topic. Well, my mind set off along this train of thought earlier in the week when I received an email from a #vitiligo sufferer in her early 40s who had visited my site looking for an effective treatment. This person, a mother herself, told me that her mother blames herself for her daughter’s vitiligo. Apparently she had her daughter at a very young age, was not able to look after her properly and didn’t feed her as frequently as an infant should be fed. When I read this, my heart went out to the daughter and the mother. I felt for the daughter because I know from personal experience what it is like to grow up with vitiligo and the distressing psychological effects this can have. I felt for her mother who must have had a very difficult time trying to look after a new-born at such a tender age herself. And what struck me was the fact that, like most Mums, she took on a huge burden of guilt for the fact that her daughter has suffered. Rightly or wrongly, she evidently feels that total responsibility for her child’s welfare and happiness rests on her shoulders - even now that her child is a mother herself - and this seems to me to be not just part of a mother’s job description but part of her DNA. I can remember my own mother telling me she often wondered if she did something wrong either during pregnancy or afterwards that led to my vitiligo. I am not a mother myself but I have noticed that Mums are often quick to give their children the credit for the things that go well in their lives and equally quick to take the blame for anything and everything that goes wrong. Perhaps that is one of the many reasons we love them so much.
Anyway, back to Mother’s Day… if you would like to know its history or the different dates it is celebrated in the various countries around the world take a look at this site which seems to contain everything on the subject you could possibly wish to find, including some lovely quotations and poems for those home-made cards that are no doubt being crayoned, daubed, glued and glittered as I write this.
So, I will end this post by saying again "Happy Mother’s Day" to UK Mums for Sunday (and, coincidentally, "Happy Quilting Day" too) but before that day dawns, please don’t forget that tomorrow (March 14th) is International Fanny Pack Day… yes, really!
Sometimes it’s the little things that make all the difference. And, if you have a chronic condition of any sort – in my case, #vitiligo – there really is no such thing as a small improvement: every #improvement is massive. So, as some light relief between my posts on other diseases related to vitiligo, I thought I’d share with you a very nice – if odd – surprise I had recently.
I’m fortunate enough to have almost fully repigmented over the past 4 years after a lifetime with widespread white patches on my skin. I have always been very observant about the shape and size of every patch of white skin and have observed them as closely as they have diminished as I did when they first started developing. (Anyone with vitiligo will understand how obsessive a person becomes when their appearance is prone to fundamental changes from one day to the next.) However, I only recently noticed something that I had completely overlooked: my ears, which had lost all their pigment years ago are 100% repigmented and I never even noticed it happening. (I suppose it just goes to show that it’s not that easy to see something when it’s stuck to the side of your head!) Although I probably wasn’t as upset about my ears as I was about my face and other areas of my body affected by vitiligo, I do remember thinking they looked as if they were made of wax because of the stark contrast in colour where they peeked out from my short dark hair… a bit like a chimp’s ears, I used to think!
It’s only because I developed quite a tan over the past month or so that this improvement has become apparent. Some of the repigmented areas of my body are still quite freckled (lots and lots of freckles that have mostly joined up but you can still see that there is some slight mottling) whereas others have never produced freckles at all – they have simply faded back to full colour gradually. My ears come into this latter category. The day I noticed that my ears were back to their original skin tone I actually spoke aloud to them in the mirror and said “OMG – it’s soooo good to have you back!”
If you don’t have vitiligo you will think I’m a total nutcase for talking to my ears, but then if you don’t have vitiligo you are probably not reading this blog!
I was born an Earthling.
Just like all the other smooth-skinned, one-tone beings on the planet.
But, before long, I started to see grotesquely spotted aliens on the starboard bow – on every bow, as a matter of fact.
Humanoids – but not as we know ‘em, Capt’n.
They were the stuff of sci-fi nightmares.
They terrified me…
… until I realised they were my reflection…
… at which point I was more terrified than before.
I was being pursued…
… by a Terminator- intent on destroying my future self.
It was Invasion of the Body Snatchers, with a twist.
My body, being stolen from me, patch by patch, until I was a fully paid-up inhabitant of planet Vitiligo.
My recognisable life-form, disintegrating before my eyes.
Shattering into an infinite number of colours.
Sucked relentlessly through hypo- pigmented space into a black hole of ever-expanding, blinding whiteness.
I had become other - one of them.
Turned to the Dark Side – or, should I say, the White Side.
Like all self-respecting Body Snatchees, I hid my monstrous self behind a benign disguise.
I became an intrepid cosmeto-naut, covering my alien skin and prepared to wait it out for the duration.
Resistance is useless.
After all, in space no one can hear you scream.
A lifetime spent in Dr Who’s waiting room…
… bigger on the inside than on the outside
(owing to the massive number of double-blind tested drugs stuffed into it by the Galactic Funded Research Empire).
Then, Infinite Improbability presented me with the answer to life, the universe and everything .
It was not forty-two. It was, in fact, the Blue Planet Cure…
… the health-giving goodness of the leafy green earth and the healing rays of our sun.
No longer lost in space,
I had entered a transporter room where abnormal matter is converted into a cloud of shimmering pigment particles and beamed back home to smooth-skinned, one-tone humanity,
amid tele-transports of delight.
… for beaming me up!
For most of my life I have been a marble cake. Personally, I love marble cake. it's beautiful to look at and very tasty but I always knew I hadn't started out as a marble cake and that made me uncomfortable!
Then, about 3 years ago I started to turn into a fruit cake (OK - I admit it - I've always been a bit of a fruit cake!.
And now I am a cinnamon cake - my original recipe - all one yummy colour - the way I used to be before #vitiligo!
We are used to hearing that we need to eat more fruit and veg but, if what I read on the subject of #vitiligo (and good health generally) is true, we should avoid all sugar as much as possible - including fructose - which means reducing fruit intake and focussing on veggies instead. So, with vitiligo in mind, maybe blackberries really don't work!!
I was wondering what the collective noun for a group of vitiligo sufferers would be... would we be called a lesion?!!
My name is Caroline.