It always happens to me.

As you may or may not be aware,my daughter,grandson and me were due to go on holiday to Scratby,a small place just up the road from Great Yarmouth.We didn't expect much,we had only paid £100 for five nights(usual price is £135 for 7 nights) just a little chalet not to far from the beach an onsite clubhouse for the evenings and shared indoor pool with the neighbouring site.
We arrived about 11am and noted that the site looked 'tired' but not awful,we unlocked the door to the chalet and we were horrified,before we could take up residence the place needed scrubbing,door handles and cracks needed fixing and the radiator needed reattaching to the chalet wall,rotten out of date food needed throwing away etc etc.
We thought that perhaps we could spend the rest of the first day cleaning so decided to actually drive around the site and look at the clubhouse and shared facilities,I took one look at the clubhouse and the Peterboro' wing of the EDL sprang to mind,worn out St Georges flags on the corners of a decidedly scruffy very small clubhouse advertising sky tv and cheap beer,the shared facilities were not in the stated walking distance and were just as worn out looking as everything else.See this link for some piccies.
We started ringing around,the only place we could find with vacancies was the Vauxhall caravan park in Yarmouth,the price however was £386 for the 5 nights,daughter and I couldn't manage to spare that much and so we rang the woman who owned the chalet to tell her we wouldn't be staying and that we would be returning the key forthwith.She kindly volunteered to refund' some' of our money,I wish I had been the one talking to her instead of my daughter.
My daughters hubby then rang to say he was leaving for Italy(he and his brother were driving there for the grand prix hence the holiday for us)My Daughter got really upset on the phone to him and bless his little socks he promptly used the money he had saved for a casino visit to pay for a stay at the Vauxhall.It turns out that the Vauxhall park is so expensive because they are hosting the Elvis festival 2012.........I really don't like Elvis' music but I had great fun being quietly mean about all the paraphernalia involved in being a fan,handbags,t-shirts,belt buckles,dresses and 70 year olds with jet black hair and winkle pickers....there was a non-Elvis entertainment room there as well so no real problems there,except some kind person gave grandson Rory an Elvis doll and as Rory was sharing the double bed with nanny I also had to sleep with Elvis. Overall this holiday in a caravan has ended up costing £100 a night.......
The tip of the day is to never book a holiday via an individual who is advertising on the internet.

It's been a while....

I really struggle now to put together more than the 140 characters allowed on twitter,but thought I should try.

The MS nurse rang today to tell me I was due my yearly review,I explained that either my brain fog was worse or there was a mistake as I had only seen an MS nurse in February and I know I haven't slept that long.

After a brief chat she said goodbye and we hung up,my breathing suddenly became laboured as it is wont to do at this time of year,so I grabbed the old inhaler and very expertly sucked an earwig into my tubes..........much hacking and horror later the bloody thing crawled away as I was gasping like a fish out of water and all I could think about was this post by BendyGirl.
Still I survived so all is well.
In 11 days grandson will be 2 years old followed shortly by a whole sack load of other birthdays.
BIG ANNOUNCEMENT I am having a holiday,my first since 1993 yes it is 19 years since I last went away,I am off to the exciting California sands near GT Yarmouth to stay in a chalet with daughter and grandson for six days on the 6th sept........yay woohoo.........

PS.
That isn't the actual earwig,that is an endangered one from here.

Blogging Against Disablism Day 2012

As you can tell,I really am not up to the joined up thinking it takes to blog,fatigue,brain fog and pain have finished this for me.
This short piece is just a reminder it is blogging against disablism day today,see here.

Bugger the inheritance, you're going in a home!!!

My mother rang me yesterday.

That woman will wear me down,she has a rather scary health situation going on,she has to have a bladder biopsy as during another procedure they spotted a red shiny patch in there,fair enough she is afraid, I do have some sympathy you know,well I did have....
She proceeded to talk me through some mythical torture she is about to endure and for some really bizarre reason which I really don't get she then told me she is worried that she will be the exception that breaks the rule because Mary Archer had bladder cancer and was treated and survived.She then proceeded to tell me about her cousin who had never smoked or drunk but had died of throat cancer in nineteen hundred and frozen to death 1954 I didn't tell her about throat cancer and HPV  she does seem to be taking her health advice from the daily mail of all places.........
She then started to tell me she was really sorry but she had forgotten Poppy's fourth birthday(my granddaughter her great granddaughter) and was I coming to her birthday tea,it is on Sunday the 9th of October as she expects to be unwell for a few days after"my birthday on the first" so I say "oh don't forget Sam's birthday on the fifth will you",which she completely ignores,so she will forget poor Sam's birthday again this year,it is at this point that I somehow manage to disconnect the phone from the socket and it takes me two or three minutes to plug it back in thanks to a tangle of cables and my disability,when I have reconnected I have a listen to see if she is still there or if I should ring her back,she hasn't even noticed my absence and is still waffling about her birthday and I won't forget will I ? how can I bloody forget you have sicked father on me so I have had to buy an expensive original newspaper from your birth date,I am also having to supply the cake and she will yet again forget her granddaughters birthday,on top of which all through my illness and disablement over the last couple of years she has never once said"how are you" or "how are you feeling" no matter how much pain I am in or how many walking sticks etc I have had to use or even how effing terrified I have been.

Oh by the way,I appear to have a previously unseen genetic problem,I have a switched letter instead of  a G I have a T it is fairly near the dodgy sequences that cause HSP although they don't yet know what the likely outcome of this will be,so now all the kids and grandkids will need testing as no one else in the family is known to have any problems it must have been a de novo error when I was made.

Look a gratuitous picture of my gorgeous granddaughter in her party frock.

Dear Prime minister,

You have this really, really wrong.
When the milk snatcher was in power and destroyed British industry a result was huge swathes of the populace unemployed,to massage the numbers, in an attempt to keep at least some voters, everyone who had ever had a backache or earache or some simple but ongoing medical thing was put on the sick,my next door neighbour being a prime example,for 20 years too sick to work yet owns steel toecapped boots and safety visors and is still seen and reported for "visiting my friend at his unit" He has somehow and still is on the sick,yet able to build 12 foot long sheds and ride a full on motorbike unaided and go off painting and decorating peoples houses for them.
I can now only walk no more than about 50 metres if I have someone to hold onto or my grandchilds pushchair as a walking frame,I have fatigue,which doesn't mean I am sleepy it means I am asleep for 16 to 18 hours every day.
I, after just one month on the sick with a degenerative though not terminal illness,have already had the form from ATOS,I am about to have to start job hunting,the form is written so that unless you have no arms, legs or mouth you can and will work.If I don't go to meetings at the job centre or go for interviews I will then have my benefits cut off.However,there is no direct public transport to the town where the jobcentre is,even if there were I cannot walk to the village bus stop or from the bus station to the job centre in town.The cost of a taxi there and back would use over half of my weeks incomeThe government are also going to cut my housing benefit as my house is now considered underoccupied.So from my 67 quid a week I will be paying £10 a week water, £10 a week electric, dog knows what in rent  and in the winter I will have to stay in bed to keep warm as coal will be just too expensive now.My phone line will have to go I suspect as BT like to not only charge the earth they also like to charge me extra for being poor and unable to pay in advance by direct debit.Before anyone suggests it,I am not qualified for any sort of desk job,if I were it would have to be within a few feet of a loo and transport and have no stairs,I cannot move house as I have been downgrading jobs for years with odd unexplained problems and I have no savings whatsoever.Dear David Cameron and that traitor Clegg,is this what you mean when you say all in this together ? you jumped up, never entered the real world,twats.

I may be officially a crip now.

Saw neuro today as an urgent GP referral,
I have my baclofen back so less spasms and twitching,I have nothing for the fatigue yet,she has done some more blood tests to rule out a couple more things but says in her heart of hearts she thinks I have secondary progressive MS in my spine ,although she cannot officially diagnose until something shows up in MRI or LP,
I 100 per cent do not have a functional deficit/conversion disorder .
If all these blood tests come back negative we can experiment with antifatigue drugs,but it seems they only rarely work.
I will get an appointment in the post for the bladder clinic(the urgency is bothersome and worrisome),I can get an emergency appointment with her any Friday by getting GP to ring and finally I am to contact social services to see if any help is available and if I need it she will write to dole office etc describing my illness/symptoms etc.

Unwell,unemployed and moaney,

Well that did a lot of good,or rather not,all tests come back negative,no leukodystrophies,heritable spastic paraparesis or rare copper metabolism problems,no thyroid or diabetic issues and no neuro-syphilis ,in fact I am perfectly healthy except I don't function properly,it would seem according to docs that I have either an unknown neurological condition or MS that just isn't testing positive.This exciting news means that I can expect absolutely no treatment for the time being,In fact I am currently getting less relief than last week.
I went to my GP to ask again if I can have any help with my seriously debilitating fatigue,she promptly took me off the antispasmodic baclofen as 'they can cause fatigue' I explained I had suffered with fatigue on and off for several years before any other symptoms showed themselves to no avail,I am now fatigued and full of cramps,spasms and spasticity.......
Daughter has gone off to Australia for her year,various members of the family saw her off from Heathrow,Rory and his daddy found a taxi to play in whilst there

she is such a busy bee,instead of having some fun she starts an accounts job Thursday, less than a fortnight after arriving! She has sent back picture of beaches and fruit bats and cockatoos via facebook and hopefully we will be arranging a skype schedule for video calls,don't tell her I said so but I miss her nightly moany phone calls.

Her moggies are well settled now and have arranged a truce with my Lucifer cat,in fact Claude her slightly simple cat has developed a fondness for my crochet blankie in progress and Charley the big ginger and white cat has taken possession of my sheepskin rug.