Maniacs are Go!

I haven't blogged in a very long while and I will be frank (or Shirley; I don't mind) - it's because my blog was meant to be about my training for the Sahara Trek and to be honest, I really haven't done any.

I know, I know - I lack self-motivation and self-discipline......tell me something I don't know!  What I lack in 'selfs' though, I hope I more than make up for in enthusiasm.

My husband Alan believes that it is because I hate to be left out that I subject myself to such experiences, and I think he's probably right.  He includes skiing in that too and if you read previous posts on that subject I am sure you'd agree.  Indeed, how could I organise and say goodbye to a team of trekkers (the Maniac Endocrine Nomads) without being amongst them myself?  I use the word 'organise' in the loosest sense.....

So, a five mile walk on each of the 2 weekends preceding the trek will have to suffice as my training.  At least I have a good idea now where my blisters will arise (and have packed the necessary quantity of blister plasters to combat them).

Anyway, the American Maniacs leave today on a gruelling journey to Marrakesh by aeroplane, followed by (I suspect) a 'seat-of-the-pants' land transfer to Ouazazate; the gateway to the Sahara.  Unfortunately, the UK Maniacs get 2 more days at work, leaving Friday afternoon from Heathrow (flag-wavers welcome!).  Hopefully, we'll all meet up for breakfast on Saturday before being bussed for several hours and dumped in the dunes to begin our adventure.

What's the biggest worry of our intrepid gang?  Lack of toilet facilities of course!

And of course in addition, for me, a total lack of unmelted chocolate..........

Nearly there!

Hooray!  Added up my total fundraising yesterday and it stands at £2940.45 so only £59.55 to go to reach my £3k target!  I have been saving a good deal of this myself bit by bit which has helped enormously, so i will continue to plough on and hope to eventually raise much more than the necessary £59.55.  E.g. I will be skipping around the Nike+ British 10k London Run on Sunday 8th July (can't run these days; too painful on the joints, but skipping is so joyful!) and have a few other ideas, so i don't think i'm done just yet......  Moroccan May was really popular last year so may give that another go too.

p.s.  Didn't break any bones skiing (yes, i gave it another try) but did strain the knee a bit so trying to be careful.  Snow-shoeing was amazing - we went during the only damned blizzard of the week.  Earned by chocolat chaud and vin chaud that day i can tell you!

That time of year

Oh dear - skiing again in a couple of weeks; feel physically sick just thinking about it!  Haven't booked any boots or skis and will go the way my mood takes me when we get there.  Still contemplating going on some organised snow-shoe walks but probably need to swallow a French dictionary first.......

I MUST BE MAD!

Of course, 12 years ago my former GP did think I was mad (he hadn't looked in the mirror recently) and banged me up in a psychiatric hospital (called 'Mum's Nuthouse period' in our home).  Funnily enough the REAL psychiatrists weren't so convinced and I have them to thank for saving my life that first time (yes, there were other less dramatic occasions).  High blood pressure, palpitations, migraines and vomiting aren't that common among 'fruitcakes' I'm sure, but they are common with certain tumours of the adrenal gland.  I eventually named mine 'Tyson' after the rather mean boxer.  No offence to anyone who 'does a stint in the nuthouse' by the way - they did some great work and I even made some (relatively sane) friends there!  I use the term 'fruitcake' affectionately too.......

No, this time it could be true!

I took April off from the Pennington Pop-Up Restaurant.  I was so busy at AMEND and just couldn't work out what to do for the best; Austrian, Arabian or Albanian April.  None of them sounded right.  How does anyone deep fry 15 Weiner Schnitzls in an ordinary kitchen anyway?!

So we're already into May now and I really can't take another month off or I won't stand a chance of reaching my £3000 target.  It was always going to be Moroccan May too, and that is so relevant to the Trek that it has to be done!  Problem is, we're just as busy, if not more so!

Never fear, the emails are sent, the posters are up and the fliers are ready.  Now for the menu.......!

It gives me a great excuse to clean the house (it doesn't get done often) and catch up with friends - hopefully ones who bring large wallets!

MRS ANGRY

We've lost another wonderful MEN2b patient member aged just 42 (my age).
Described at her cremation service as 'a life force', 'inspirational', 'brave'.
I met with Lou once - once is enough to have left an amazing and lasting impression of her wit and bravery.
She had this affect on everyone she met and will be so sorely missed by all who knew her.

Too many, too young.

It makes me angry that there is so little research into rare diseases like MEN

Please, please, please join us and help change all that.

Put those walking boots on and help us raise money to fund research into MEN

Mexican Madness

Last night saw the 2nd of my Pop-Up restaurant evenings; Mexican March.  It was almost a full house with 11 people crammed into my living room, but it was such a good atmosphere and i think most people enjoyed the more authentic Mexican food served (no Tex-Mex here!).  We now know that we will have to limit our restaurant evenings to a maximum of 14, but i don't think that's too big a problem.  The Other Half was successfully chained to the kitchen and yet managed to get equally successfully sociable by the end of the evening - I think the number of empty Corona bottles in the kitchen was a clue. 

Sadly we were very short-staffed as The Boy had taken to his bed with a headache (dehydrated again no doubt) and Girlie was next door baby-sitting, so yours truly (dressed appropriately in flowing cotton with flowers in my hair) waited tables like a whirling dervish (double pain killers last night and this morning and wondering whether i could squeeze in a quick hip replacement before the Trek).  Still, a most enjoyable evening and so great to catch up with friends that i hadn't seen in ages.

On Friday I did my annual trip up to London to talk to 2nd year medical students at UCL about living with a genetic disorder.  I love doing this, and not just 'cause they pay me!  Although they get younger every year (to me) they are as bright as anything (even those with hangovers!) - it's almost a therapeutic experience for me with the added benefit of hoping that one of these young things will remember me when faced with a difficult-to-diagnose patient in the years ahead, and possibly make an earlier diagnosis than i had.  Bless them; they had swotted up on me and wished me luck with The Trek - wish some of them would come too!!

In between all these activities of course, I've been constantly watching the news since the Japanese earthquake and tsunami - absolutely shocking.  I have never been there, but am due to go in June to talk at a medical conference and so have been in contact with doctors and the chief of their new patient group - all lovely people.  Thankfully, they are all okay but it has completely shaken everyone there.

Well, i best go and continue changing the restaurant back into a home; stacks of washing up and furniture moving to do as well as lots of left-over tortilla chips and After 8 chocolates to hoover up!

The White Stuff

We all returned safely from our now traditional half-term ski trip to the French Alps.  I am always so crippled with butterflies in the stomach beforehand, and indeed, they got the better of me somewhat this year.

What little confidence I gained last year seemed to desert me and I only skied a handful of times, albeit managing the final little piece of black run that ran down into the resort (that was almost fun).  Otherwise I kept to the greens and a little bit of a blue.  I did successfully negotiate a chair lift (my nemesis from last year) and even did so without falling over at all and despite feeling sick to my stomach the whole way up.

But it was the kids that amazed me.  Last year, Girlie lost all her confidence skiing with me (believe me, my skiing will knock the confidence of a world-class downhill skier), but this year we managed to persuade her to join an adult class and it all came back to her, with more on top.

The Boy just blew us away though.  He passed his 3rd star level with the ESF (French Ski School) and is now relatively comfortable on black runs.  He's really found something he loves to do - shame it's so bloody expensive!

So who knows what next year holds.  I think I might be better with the non-sliding sort of activity afforded by snow shoes, and failing that, at least I know that I am completely comfortable in a restaurant or bar practising my French and drinking gallons of 'vin chaud' or 'chocolat chaud'.