Willows Son To See Proff Mathias In London As Still Bad

[willows]

Well I can honestly say Mike has had a dreadful summer .

Mike has not only been verbally abused and humiliated my some of the lads he used to go to school with , but he has now developed more symptoms of POTS and is having a bad time of it at the minute.

His humiliation started when the lad he used to know well and who has been here at the house as a mate got a car , he then proceeded to drive past Mike when he was out with a load of other mates in this car with the window down and call horrible names out of the car window for everyone who was around in hearing distance of him like : Spastic, cripple, weirdo etc and pray why ???? Because when my wonderful son gets so much pain in his legs that he was difficulty walking and limps or staggers this low-life thinks its funny to abuse him becuase he's unwell. He also calls him names because Mike looks pale or even slightly yellow in colour , another sign that Mikes unwell ..............what is this world coming to

But my wonderful husband , being who he is did not let this person get away with it for as soon as we became aware OMG all h*** let loose!!!

This lad by the way isn't a kid , no he's a lad of 18 years old and in my book an adult who should have known better given the fact that he went to school with Mike and KNOWS that Mike is ill and has such a rare medical condition ...shame on you .

So Mark went to see his parents and told them of the abuse there precious son was doing to Mike and I think we can say that the air that night in that household was all the colours of the rainbow and the mother of this shameful lad was so apologetic that when we next saw her in the village she was so embarrassed by what he son had done didnt know what to say to either my son or I and went scarlet , well it is our job as parents to stop this sort of thing and if I discovered my son being abusive or unkind to someone in mikes state I'd go absolutley ballistic with him , which I hope she did ,

Next : Mike has now moved on again , which is very worrying as it took me years and years to get as far as he is now.

He's now developed the sweats and is finding it hard to cope with this downpour of heat, water and then chilling off and guess what ? Yep this summer not only was I made a prisoner in my bedroom but next door was Mike stuck in his curtains drawn , telly on laying on the bed exhausted, sweating , tired , and just down right fed -up.

His ability to cope with the fatigue is terrible and today when we went to see his consultant he feel asleep in the car on the way there .

So, Mike is now being sent to Queens Square in London to see the Proff with mum here going with him . Mike has in all his 18+ years never been to London as being who he is I deemed it to dangerous for him and the risk of him being 'taken' was to high ( many of you know who Mike and I are so this will make sense to you )

So in all this summer has been dreadful for us all .......family update:

Mark......Oh, crazy one : still pottering about and falling in his Leg & foot brace, spinal problems still 'ticking away ' but now they think my wonderful husband may be 'bi-polar' OMG what next for the poor man !

Mike.......out of control high heart beat and low blood pressure, chronic fatigue, excessive sweating , digestion problems, headaches, blurred vision, nausea, chronic leg pains, lack of sleep and to much sleep .He passed his 2nd year at college and is now a 3rd year ( we are both so proud of him under such terrible circumstances) and the college has after 3 whole years now accepted that Mike is disabled and sorted his parking space, been made aware by the internal messaging services that Mike cannot do 10 mile walks, go out on the moors with the marines or do anything that will make him collapse in a heap on the floor going into heart failure...... thats 3 years its taken them .

Mike is also now having a monthly allowance from us as we feel at 18 years old he needs to feel he is NOT sponging from us for every penny but that he is in control of his own money , this his brought the biggest smile to my sons face since I once again upgraded his bike ( yes, 3rd bike in 12 months ) to a limited edition speed-fighter in bright red and white , which I might add he was so pleased with he almost passed out again from ..........................cant win can we !!!!!!

And me......... well , I've become a granny again which makes a total of 8 grandchildren , one of best friends has just become engaged and we are getting ourselves sorted for a May 2010 wedding , my brother has after 25 years met and is now ' head over hells in love ' with a nice lady ( he's in his mid 40's and is still single ) and once again they have been trying to improve my daily living by cutting drugs down or increasing them here and there and what happens ............I am stuck with my head down the loo and then flat on my back for 3-4 days before I go back to the drugs I was on ...........oh , happy days . But the worst thing this summer was the fact that I started to show signs of ...............DEMENTURE ........... not knowing where I was , what time it was, what day it was etc and guess what ?

It was my simvastatins doing this to me so now I'm off them for a while which means my cholesterol will go flying up to the moon and back as I make cholesterol all by myself and can go up to the mid 20's+ .........what a clever girl I am !!!!!

We are having our bathroom made into a wet room because we all keep 'hitting the deck' trying to sort out the shower over the bath, and we are now having stair lifts fitted to the house as mark keeps , still doing a 'lets have a very close look at the stair carpet on the way down ' which I'm pleased to say he still thinks is very funny !

So all , I do hope your summer hasn't been as bad as ours.

The only good thing that has happened to us is our dear little Harley Davidson , who is now a whole 6 months old .............but wait , even he has been ill

Getting a frantic phone call from Mark on morning as Mike and I where on the way home to 'get here quick' Harley was foaming at the mouth, snot pouring from his nose, banging his little fluffy head against the walls and falling down the stairs trying to reach Dad........screaming his poor little head off. My poor little furry bottomed critter had only gone and bitten a wasp which had stung the roof of his mouth and of course he didnt understand why the thing had hurt him !

So it was a mercy dash at 'very high speeds ' along single country lanes at about 70 mph to the vets for an injection and to be watched for a few hours for as you know wasp stings in and around the mouth in such a small kitten as my little one can and will block the airways and cause suffocation .

Blimey , what next ........suggestions on a post card , but not to me please !

I do hope that your summer wasn't like ours and hope you are all doing well .

A somewhat still crazy as a box of frogs .........Ami , Mark, Mike and a big purrrrrrrr from Harley .

[firewatcher]

Whew! Sorry about all that, but happy to see you again!

[janiedelite]

I'm so sorry to hear of the struggles Mike's been having in school. That's so unfair!

But I'm so glad to see you back, too! In fact, I was just reading one of your old posts yesterday to cheer me up. I hope Mike can get some relief (and you, too!).

Take care.

[juliegee]

Ami-

I'm so sorry to hear of what ALL of you are going through. I'm so happy Mike is will be getting proper help with Proff. Matthias. I will pray he gets him on a more effective regimen. Your son's issues are quite similar to my son's. Mack's sheets are sooooo sweaty I sometimes have to change them twice in one day.

I've been thinking about you, so it's good to have an update. I follow your family closely. Ami, somehow I missed one thing. WHAT IN THE WORLD HAPPENED TO GILBERT????? Please let us know.

Here's hoping things will soon be looking up -

Julie

[ajw4790]

Wow! It sounds like ya'll have so much going on! I would be beyond exhausted! I too had been wondering what in the world happened to Gilbert??? I hope he is no longer bothering you!

[willows]

Thank you all for your replies.

First of all I said a unfond farewell to Gilbert ............hes gone along with another of his mates called 'Burt' but lo and behold a little ( well not so little ) mate of theirs has decided to start growing again now and I'm the not -so-proud owner of a nice squishy lump in the joint of my left wrist , so I've called it 'Humpy ' hopefully Humpy will be going 'walk-about' to investigate the inside of a surgical bin soon !

Now do you want to hear something awful................read on :

Yesterday we all went to the country fair at Powdering castle in Devon, it was a nice day not to warm or to cold so my son and I for once could walk around without feeling faint , stressed or freezing cold .

We made our way to the back of the big show having visited the ferrets, owls, birds of prey, the wonderful fluffy ducks ,huge chickens and lots of other small animals who had been entered into events to win show cups.

The food stalls all had us dribbling at the mouth with 10 year old cheeses , apple juices , jams, fudges and tons of home made breads and cakes and then found our way to the private stalls that were at the back of the show , one of these was 'GTS TOYS' it did not say which town it was from but I got the impression it was from around Devon somewhere.

Having wandered into the tent to have a look about for an item or two for my 'granny box' I left my son and his carer outside the stall smelling large highly coloured bouncy balls, a few minutes later I was made aware that the toy shop owner was talking to my son and so came out to see what was going on and the following unbelievable event happened.

Mike , who you know has a horrendous heart condition was standing talking to a shop owner about these kids rubber balls hanging on the front of his stall, the shop owner was saying that each ball had a smell of fruit about it .

He then left us for about 10 seconds and came back with what appeared to be ..........'A STANLEY KNIFE' or people who do not know this knife by this name its a crafters knife with disposable blades in .

The stall holder said to my son ' Here take this and pop one of the balls so you can smell what I mean about the fruit smells ' my son looked surprised as I did but like any normal person having a knife dropped into his hand he didnt think any thing was odd .

BUT .......................IT WAS A TRICK KNIFE AND WHEN IT HIT MIKES HAND IT INSTNTLTY GAVE HIM AN ELECTRIC SHOCK .

Mike immediately dropped the knife to the ground and I saw him wince holding his hand he look really shocked , this horrible GTS TOY shop owner actually laughed as I told him he was so lucky I didnt beat him around the head with my walking stick !!!!!!!!!!!!!!!

This man put Mike life at risk of a heart attack , in fact anyone who has a bad heart condition at risk of one because something as simple as an electric shock like this can bring on heart failure, attack or a number of other problems , how do I know ? because many years ago I had such an attack from the static shock when calling a lift in a department store .

I was so angry with this man , who still thought it was funny when I informed him that Mike had a heart condition which was unstable at this time , he just kept saying so what , so what , and then said 'well look , I'm getting shocks from picking it up ' and laughing at all three of us .

OMG , has this MORON at GTS TOYS has no understanding of people , he may not have problems from a shock but my son did and he could have killed my 18 year old son because 'HE WANTED A LAUGH'

I found the person in charge of the show and informed them that I was furious about this and the lady agreed that this was not an appropriate thing for a shop owner on her site to do to anyone , let alone a disabled person .

I will be emailing the fair in a few minutes to see what was done but as far as my family are concerned this man got of lightly and I am about to email our local police to inform them that Mike has been assaulted by a toy shop owner !!!

As I have always said on this site , its like there is a big sign hanging over our family saying ' Get your laughs here , do what you like to them and never mind the consequences'

I'm keeping an eye on Mike at the minute because any shock to the heart can still have an effect up to 48 hours after the event .

Am I angry .................. ? well if you look outside you may just still be able to see the steam coming from me ..........AAAAAAAAAAAAAAAAAAAAAAAhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

[brownsea]

hi willow

that sounds dreadful and i think you are doing the right thing with informing the right authorities about this incident. silly man.

my brother lives in devon, im in london. im a new person on this site hoping to learn more about my condition.

emma.x