Tuesday, 15 December 2009

Click here for my latest video

Video on You Tube

Friday, 11 December 2009

Lorazepam - Wikipedia, the free encyclopedia

Lorazepam - Wikipedia, the free encyclopedia

Wednesday, 9 December 2009

Its been a couple of weeks

Not really been writting much recently, not much to say... still ill.. still waiting for the "new" drug.. still good n bad... still....still.... still......

Thursday, 5 November 2009

70 year award

went to the hospital again!!.. but meet a gentleman who had just received his award for having diabetes for 70 years.. i mean wow... just totally inspiring.. what he had to deal with back then is just amazing... makes you think how lucky were are now...

Tuesday, 3 November 2009

The Diving bell and the butterfly

Inspiring.... man who learned how to communicate with just one eye after being paralysed due to a stroke... he wrote a book!!!!!... They made it into a film as well as the book... you have to see it.....

Monday, 2 November 2009

well what can i say

well. you know when u know the answer but dont wanna hear it.. well went to see my stomach doc today n basically asked is there anything that can be done.. lets b straight now.. and he said NO.... well i kinda knew.. but to hear it.. well to realise the main problem i have..my stomach issues aint gonna change.. well..........mmmmmmm.. its hard i guess... no cure.. n meds.... 35!.... oh joy...great life ahead.. look i know there are worse probs out there but its all relative.. so much is driven by your mind... when will i feel poorly.. when will i waana need the toilet... if it were visible i feel i would look like the elephant man.... hard.....talkin crap i know... but hey its my blog ;)

Thursday, 29 October 2009

Message from someone who`s story was simliar to mine

Hi ya,

Just had a quick look at your blog and the magazine article. You've had a really rough time but im glad to see that despite this you are still optimistic!

Looking at your symptons I had them all too, but unlike you I did go the doctors. Not that it helped as each time they prescribed me something different - including anti-depressants, Quini for cramp and Sleeping tablets. I didnt actually take any of them as I knew that it wouldnt solve the problem. I also went to to the opticians and was prescribed glasses about two months before diagnosis. Luckily eyes are back perfect now but for 8 weeks I was convinced I was going blind. To the point I could no longer drive or read and could only make out outlines of shapes. At this point, like you I still carried on thinking that I was suffering somekind of breakdown! In the week leading up to diagnosis I spent a night out with old Uni friends in London and drank copius amounts of wine. That night I was up for about 4 hours with the worst cramp ever. I collapsed at shopping and had to get the assistant to pack my bags, looking back, I can laugh about it now but I spent about £40 on liquids alone! I then drove home! I also had to get my husband to come and collect me when I was out on my horse in the middle of nowhere as I didnt have the enerdgy to continue...the list goes on...Oh and I had lost two stone and was down to 8stone11, which at 5'11 is not good either.

Finally I was taken to hospital by my Grandparents who had visited and found me in a complete mess as my Mum and Husband had both tried contacting me and couldnt get through. On admission my sugars were at 39.8!!!! No wonder I felt like crap. The most annoying thing was that 10 days before this I had had a bloodtests when my sugars were at 18 and my doctor called me to say they couldnt confirm the problem but I would need to go back for further tests to prove what they suspected but to not worry! He then called when I was in hospital for 4 days t ask why I hadnt turned up for a second bloodtest!

Oh well, enough about the ranting, suppose we just have to get on with it. Its good to have read about other peoples experiences though as all the press mentiones is about Type 2 and I do think the impact of Type 1 is a lot more difficult to do with!

Louise Xx

Sativex

Had a another productive meet with my consultant... he is going to see if i can get Sativex cannabis based product to help with the pain relief as the tramadol and pregablin arent really having much affect now.. been on them for a while.. so will se how that goes.. you have to get it as a named patient and there is alot of red tape involved in getting in .. funding etc..
he asked if i would speak to a patient about the pump which i jumped at the chance to.. that went really well. we got on the subject of support groups and i gained some more support about getting one started around here.. the hard thing is getting people to know its happening... mmmmmm watch this space...

Documentry

had a good meeting with the students who are doing the documentry on me, so that is going forward.. they are using the angle of me and my photography so we will see how that goes..

Monday, 19 October 2009

Friday, 16 October 2009

really bad!

been up since 3... my stomach.. well i did panic at one point... but rode the storm.... feel ok now i have been to the toilet.. but at the time... how can i explain... well i am used to it now... but last year i would have called an ambulance...

Thursday, 15 October 2009

Support Groups

Had a letter from the POOLE diabetes uk support group... tea mornings and skittle evenings wasnt something i had in mind.... If i was a young person with diabetes it would exactly entice me to attend.... one of the most asked questions i see on forums is.. can i meet with others like me... where is the support group... i really does make a difference when you meet up with someone else with diabetes and you realise that your not alone trying to control this condition.... my aim is to create a support group for younger people in my area... if your reading and have an idea please get in touch... feel a bit like a one man band at the mo....

WORLD DIABETES DAY

Well.. feeling a bit down.. trying to get something going ... local school already supporting a charity... Bournemouth Balloon which would have been amazing cant fund it.. diabetes uk wont help with funding on this either.. back to square one...

Saturday, 3 October 2009

L.A.D.A

Can you believe that i have found out what type of diabetes and the explanation of why i am so ill now through my story being written about!.. I had never heard of L.A.D.A .. a type 1.5 diabetes... had you?.. this explains why i was so ill for such a long period and didnt need insulin straight away!!.. click on the link to find out more.. believe me i will be doing more research into this... but can you believe o have never been told this????????????...

Friday, 2 October 2009

They put my story in a Mens Health Mag

I gave my Story to Diabetes UK press office a while ago and they gave my story to a mens health online magazine.. Check it out and pass it on..

www.menshealth.co.uk

Thursday, 1 October 2009

World Diabetes Day

I have been trying to get support form my local "support" groups and i use that term very loosely as i received very little support from them. One had suspended their activities until the end of the year, (it is october now) and the other did not know about The world diabetes day campain.. so there aint much hope really is there!!... Surely if one person see`s the Blue lights and is made aware of Diabetes then that is the purpose of it all, educating the younger generation in my mind is key, as for the the two local support groups i have spoken to, if i were a young adult i would not feel motivated to attend these meetings if i thought it was run by my Grandparents.. surely if we are not motivated as diabetics to raise awareness then there aint much hope else where... so this has motivated even more to do something for world diabetes day so i thank you for your negativity .. you have motivated me...

Thursday, 24 September 2009

Seen my doc

Went to see my consultant yesterday.. talked about the how there is no support network for neuropathy sufferers.. he gave me a few pointers and has given me more motivation to get something started for people like me..
I also went to see a gastroenterology doc today..i am on 2 diff sets of antibiotics for the next month to see if that can ease the stomach problems.. sometimes when the stomach does not empty properly bacteria grows and adds to the situation... there is a common theme though when i see a consultant...
"its difficult to test for that" or we dont have a test for that" "or there is not much we can do about that"
but i am not giving up just yet anyway!!

Wednesday, 16 September 2009

Let me entertain you!

I have the honour of having a condition that affects my Nerves.. you cant see them... but boy is it here!!.. It is not a very well known condition so when people ask what is up with me i tell them, there always seems to be a blank look on their face. I mean it cant be that bad can it otherwise i would of heard of it wouldn`t i.. so i go on to explain what it is.. and as i do i feel like i am seeking sympathy .. which i am not just education.. but the list is so exhaustive.. as you are aware as you have read my blog and seen me rant about it time and time again...
My outlook on life has changed.. i am so much more aware of how people look at me no and judge me..
Sometimes i use a wheel chair.. i can walk... yes... but if i walk for any amount of time my feet hurt.. or my stomach cramps.. or i feel sick...or tired... but i have good days/hours and not so good ones... so too look at me i look "normal" .. but inside i am crying with pain..or anxiety of when or what will hit me next or will it come at once or will it just be the one part..or will it let me off for a few moments..i have given up trying to put a pattern to it all..but yes i can stand up out the wheel chair without help. and yes i can walk, and talk at the same time too... when you stare i can see... and that hurts too... kids i can handle and i expect it from.. but adults that stop and turn their heads and look down their noses...
i sprayed my mobility scooter for you as well so you have something else to look at when you stop n stare... i was thinking of putting a number plate on it.. but am not sure what to put on it yet.. answers on a postcard..;)...
When i get out of a disabled parking space i can here your eyes too you know,, and i put on a show for you and limp that little but more for you to rate me worthy enough to use the space..
I use a stick.. somedays i need it.. somedays i dont.. but i am here to entertain you and you pay me to live so i put on a show for you. The question what do you do for a living is in the top 3 questions you ask someone when you 1st meet them.. so when i say i am sick.. i can hear you...oh yeah.. so thats where my money goes then.. you look fine to me.. or lazy git...so now i have learned to try not to ask you what you do so you wont ask me.. well not straight away anyway..and when you ask now i say i do photography and volunteer.. then i say i am ill.. it softens the blow a bit and i feel a bit more accpeted ...
We all judge.. whether it be the colour of someones skin their weight, male female, tall short... its something that we all either have done or do..

Treat others how you would like to be treated

i must go now as i need to practise getting in and out of my whhel chair, walking with a limp with my walking stick and my scooter needs a re-spray... thats if my body will allow me... the one pattern i have found is it never allows me to have to much fun!

Invisable illness

Think about it....

Tuesday, 15 September 2009

Prof C Mathias

My consultant has referred me to the top Prof in the country regrading Autonomic function.. Prof C Mathias .. had a letter from the NHS today saying they are busy and the wait to see him is very long.. I.e several months... so we will see what he can do to help...

Friday, 11 September 2009

Dads had his liver transplant

So DAD had the call at the weekend and went in for the op on saturday, all went well me and my sister went back for the week to make sure all was ok... He is doing so well and will be back to his old self in no time..
on a shit note... i have had one of the worst weeks ever with my stomach... so bloated.. has made me very angry and upset this week,,, leaving me feeling so useless... tired... pissed off with being pissed of.... went to see dad and for an hour of the 2 hours i was there i just wanted to be somewhere else... god some days i would do ANYTHING to get ride of this...it cant be much worse... its now.. 12.30 i ate at 6 so for six and a half hours now i hve been bloated, feel sick need to go to the toilet but cant..... i know it wouldnt help but i feel like getting a knife and punching a hole in my stomach to get some relief....heart rate increases.... aggitated,,,,

Wednesday, 26 August 2009

nice guys dont come first!!!!

went to see my consultant today... had a cry and kicked off a bit about it all... why do i only see him every 4 months or so.. why do i never get told whats going on... why why why why why why.. so i am seeing him in a months time... and he has said he will communicate better with me... it just upsets me that you have to shout cry or lose your temper to get anything.. please and thank you does not always work... he is going to refer me to a top london doc so will see from there....
oh had a bad stomach last night.... so not feeling great today... whoppi do da.... guess i am just having one of THOSE days.....

Wednesday, 5 August 2009

Got myself a geetar!

Well after pondering for a while i decided to get myself a guitar again.. and what a great idea it was... well so far anyway!!... want you back want you back want you for good.. sorry learning back for good, by take that, and must have played the intro a thousand times!! but i have relaxed and not thought about shite and the day has gone quite fast too... cool... still raining and still not summer!!!oh and i feel happy!!

Saturday, 1 August 2009

pain pain go away

pain pain go away come back another day!!!!

PPPPPPPPLLLLLLLLLLLLLLLLLEEEEEEEEEAAAAAAAAAAASSSSSSSSSEEEEEEEEEEEEE!!!!!

when will there will a cure?
when will it go?
why oh why oh why?
yes its 3.13 in the morning...
yes i am in pain
yes i am sooooooo tired
no i cant sleep
i have bought a new guitar though.. maybe it will help keep my mind off it...

Tuesday, 28 July 2009

Pop 4 Diabetes

check out the site.. the venue is in bournemouth on teh 17th of october with various stars.. help people with diabetes and have some fun to...

Commissioning Group Workshop

Am attending a meeting with top officals to do with the NHS and diabetes, including DR Rowan Hllison MBE, and Anna Morton Director of NHS Diabetes.. looking forward to it.. had loads of information to read today... its all go at the mo!

NHS Diabetes service user group

attended a meeting with about 17 other diabetics/careers/parents... to see if we can help improve change add to how diabetics are treated in the NHS... it will run for 18 months and we will meet x4 every year.. if you have anything you want me to add or any ideas then please let me know.. i have been wanting to do something like this ever since i was diagnosed and sitting in my hospital bed which seems like yesterday!!... maybe i CAN MAKE A DIFFERENCE after all....

Saturday, 18 July 2009

caverjet

blimey.. things i do hey!!
Click to follow the link on how to use caverjet... better than viagra.. just a bit more painful!! yes its an injection where... well where do you think!

Sunday, 5 July 2009

hypo

having a hypo.. had a few stomach issues.. feet were hurting,,, feeling a bit tired.. its 4.30...heartbbeat increases, sweats.. feel weird... dizzy... sorry just explaining the hypo as it happens.. very hungry like ravenous.. bt i know from experience this this is like a "phantom" hunger it aint real if i eat now i iwll feel sick later and my sugars will explode... oh but the temptation is there............ i pack of go ahead snacks and a couple of slurps of lucazade is cool... after a while it will pass...

Monday, 29 June 2009

trigeminal neuralgia

just been given some advice about the glands in my face...


thankyou so much lisa xx this descibes my condition down to a tee!! i will be getting on the case to my doctor 1st thing in the morningx

silent hero

MOM...

My Mom came to see me twice a day every day for the 6 or so weeks i was in hospital.. and when i went home was my carer.. making sure i ate... helped wash me.. took all the abuse i threw at here.. and that was alot... i have a temper those who know me at the best of times... and now she is doing it all for my dad.. so the past years instead of enjoyinh life she has been looking after us... i love her so much...

Liver transplant

Not sure if i said or not but dad is going to have a liver transplant.. he has had all the tests and is waiting for "the call"... he has such a hard time over the past year or so.. diagnosed with diabetes, neuropathy, and if you know anything about it.. water retention is a big problem.. he has put on about 9 stone!! yes 9 stone in water... imagine that... well he went in today to get it drained off... fingers crossed... he will be fine i know it..

Sunday, 28 June 2009

bad feet

feet really hurt today... only thing i can relate it to is having massive brusing all over your feet.. so hard to walk... ;( but i suppose i had a good day yesterday so you take the rough with the smooth

Thursday, 25 June 2009

I wrote down a list of my issues for when i last talked to my consultant

Issues with my body by Lee Nevitt

I find that when I see a doctor I sometimes forget one of my many issues or cant explain properly what I go through. So please see below a list of my daily problems

Stomach
Bloating…not able to eat large meals, have to eat small and offen, I.e cous cous, soup, low fibre food nothing stodgy.
My heart rate increases, misses a beat makes me feel nauseous, having to lay down and let it pass.. Having t pass wind to ease the pain, stomach increases in size, bloated..
Sometimes I will be able to go to the toilet and this helps but sometimes it stays there.. Having diahorria or constipation
This is one of the main challenges I have as the inly way to egt over this is to lay down and let it pass
Also not being able to get myself up without holding onto something, feels like I have no stomach muscles, not able to get up off the floor without pushing up or holding onto to something

Bladder
I have small empties not a clear out so small and often I did self cathatorise for a while but I do not have to do this anymore

Feet pain
This is all the time, I have a constant pain, some days/hours/minutes are worse than others, it realy does sometimes change that quick, one minute I can be fine, the next aftera few steps the pain is unbearable, having to use a walking stick for balance, wheel chair/scooter for longer journeys or when I am out for a perod of time. This affects my sleep, I find moving my feet, walking and massging them helps, and trying to relax.
Burning/electric shocks/ice blocks/sun burn/numb!/ walking on glass/pins and needles/

Sweats
Mostly at night, but I have to take to towel to bed as I pespire so much, sometimes during the day but mostly at night

Glands
When I eat I get a shhotong electric shock type pain in the side of my cheeks when I eat something, once my glands get goung the pain goes.. This is a short VERY sharp pain

Erectile disfunction
Not able to get an erection at all, have tried a viagra and another drug, these have not worked, this affects my personal life.. Not being able t have sex and also mentally HELP!

Sugar levels
My sugars affect the pain I am in, if my sugars are high then the pain is bad.. If I keep my sugars at a consistant level. This helps with the pain

Eyes
In the daylight somedays are worse than others but I have blurred vision, not beimng able to rad roas signs for example,





pump problem

went out for a drink.. only for my pump to start flashing.. low insulin!! then no insulin.. after a few drinks not a good sign... then trying to change the bloody thing at midnight, drunk!!! erm well wasted a line and got the insulin everywhere.. ahem... the woke up this morning at 4.. with a well stmoach issue!! turtle heads away lol... checked my pump.. and whoopi the bloody battery had died!!... so had to turn the light on and change that... now i am awake... toilet stops now... so tired.. stumbling to the bog... and watching the sun rise... its now 6 and prob stay up now... oh happy days!!

helpless

Feeling a little let down by the system really, not sure what i expect to happen....altough my consultant seems good.. i only see him once evry few months.. take the last visit.. i focused on my stomach issues AGAIN!.. so i was told to do a sample.. and the results would be done the following week... well 3/4 weeks lateri had to call my GP who then wrote to my consulant for me to get a letter in the post saying the test was negative and see you next time.. great thanks.. but this stull leaves me with no answer or light at then end of teh tunnel when it comes to my stomach problems... which i have managed over the past few months by my diet... no bread or heavy foods and tryin to eat as light as possible.. but i still get the bad days.. still the comstipation... still the diahorria.. still the sweats, still the palputaions.... oh he did give me a drug that was should have helped with my sweats... yes you guessed.. it didnt work....so i shall wait in anticipation for the next visit... IN NOVEMBER so i can tell him again about my stomach and agaon for another test.. and again for a negative result... dont wanna come across negative but it is what it is... and i have come to terms with the system and doctors.. and the idea of teh doctor knows best and is always right is a thought long out of my head...if you want anything done you have to do it yourself.. research reseacrh research... then check that.. then tell your doc about it.. for nothung to get done!

Tuesday, 9 June 2009

what you looking at!

Yes i have a mobility scooter!!.. 
NO i am not 64 i am 34
I feel like a circus freak sometimes when i use my scooter... so many stares, or even laughter at a young bloke on a mobility scooter.. do you not think that if i was able to get about without it i would!... i suppose its like anything really when something is different people will stare or have an opinion..
i suppose its justn the way it is... but just have a quick think when your head turns at the person who is different to you and remember that they like you have feelings...

Sunday, 31 May 2009

My photo blog

http://photomephotoyou1.blogspot.com/

insulin pump

All going well with the insulin pump, gettingused to it and not really aware of it now, although does sting a bit when it 1st goes in... still early doors though... my stomach is still the biggest issue i have, not knowing when and where its gonna hit... waitin to see if there is another wonder drug that may help out.... not holding out though!!

Friday, 29 May 2009

Saturday, 16 May 2009

docs docs and more docs!!

Went to see my consultant in the week, and we talked about my stomach issues, he is looking into a wonder pill that may help.. i need to do a poah sample!! and go from there.. somethin to do with the the other aspects of waht the pancreas does.. which is helping with digestion..i think.. x so we will see.. gettin the insulin for the pump on monday... so the next chapter of controling the diabetes starts!!...

Sunday, 10 May 2009

mornin!

Not a great night... havent really slept too much... pump starts next week... and seeing dr kerr as well... wanna talk about my stmoach issues.. is there anthing else that can be done other than laxatives and the bullets up the bum lol... hopefully the pump will help and we will go from there...

Tuesday, 10 February 2009

Pregablin gabapentin now more!!

After seeing the consultant the other day i now on a new pain killer called pregablin so we will see how that goes.....

Saturday, 31 January 2009

the pump

oh yeah seen a doc the other day.. yet another one... so how can we help you... fuck me if i had a penny for every time i was asked that.. maybe i will get a recording and send it to them they may get the picture then .....

well gonna change my pain meds as they arent any good.. pain at the mo is just .. well and bag of shite"""
hopefully the pump will hlep level out my sugars and in turn help with the pain that seems neverending....

but where is the wondering drug.. the operation or the magic words....

here we go again!!

And so it begins.. tears heartache.. questions why...listening to sad songs and watching soppy dvds.... oh well
no blaming the illness but you did pay a part of it... the sleepness nights, the unlimted daily pain, the inability to have sex, the messing the bed, the bloated stomach, the weeing through a straw, using a mobilty scooter, nessun dorma is on the i-pod... reaching its peak..... which is what the relationship had got to............................................................................................. oh that was the ending bit......

so we will see now where the next chapter will take me!

not drunk just tired!! been a good boy not letting the demon drink take hold and ruin the mind.. and body!!

Friday, 2 January 2009

Happy new xmas year and all that

Well another year gone...

Its not been too bad pan wise.. although last night was a bit of a mare.. no sleep until about 6/7 this morning ... feet were playing up!!! not nice... but Dawn is so good.. tha massgaes really help on my feet when they are bad.. so if you are reading and have bad feet like mine.... massages are better than any drug i have taken so far...

there seems to be a break through on the food side.. i have food that Cous Cous is the way forward... low gi and all that gluten free.. seems not to affect me after eating so my stomach had not been as bad a s usual,, yipeeeeeee....... and at 4 packs for a £1 from asda.. can fault it lol

Life is good....

i am slowly coming to terms witn the illness and am making it apart of my life rather than try to fight it and get upset and angry over it all the time...

just gotta get on with it...