Saturday, 12 June 2010

Demarco`s words

Demarcos Words....

Demarco's thoughts about pain.
9 July 2009. 12.30am.
Pain:8/10.



LAVA- (purplish red) occurs when lying down. HARDEST to cope with of all sensations. Impossible to sleep while this sensation is present. Can be painful AND uncomfortsble.


CRYSTAL- (skin tone, sparkling grey) 8 out of 10 pain level, comes in waves and big blasts. This pain can occur in shoulders, sometimes in wrists, fingers and feet.


ROCK SOLID- (fluro yellow, pink swirls) uncomfortable but managable. Feet and legs feel "like a statue," and only occurs at night.


HAMMER- (black metal) takes the longest to go away. This sensation feels like repeated slamming above and below the knee, as well as feet. Hammer feels like getting needle injections repeatedly until feet feel numb.


STIFF- (light purple)-makes muscles feel weakened, like legs have no strength.


NUMB- (light blue, purplish grey, white, black, ivory)


WEAK- (many shades of red)


MACHINE GUN- (green; every "bullet" a different colour that get brighter)-exacerbates the other sensations. Anxiety and fear inducing. Pain intensifies with each passing second. Most frightening of all of the sensations.

GENERAL COMMENTS: Night equal fear/pain.
I have more pain/discomfort in my right leg.
Bedclothes touching legs is painful.
Cutting legs open with a knife would be better than these sensations.
Machine gun, combined with lava, stiff and crystal is very painful and frightening. Causes panic and anxiety.
Knees have "lava" sensation as well as feet.
Morning can feel like calm waves after a fierce storm all night.
If I wake up after I've gone to sleep and feel pain, I force myself to go back to sleep so that I
don't have to deal with it.
No tablets that Mum gives me help any of these sensations.
I daydream about lego, making new friends and fun things when I'm in pain to try and distract myself.
Sometimes I bash and grab at my feet and legs in an attempt to get the pain out. It doesn't help,
but it makes me feel less pain while I'm doing it.
I'm not seeing Dr Cotterill again.
I don't like to talk about my pain with doctors, only feel comfortable talking to Mum.
When doctors pretend that they don't believe my pain is real, it really hurts me.
I believe my pain is spreading.
Painstop helps. and sometimes Naproxen.
I want to find an answer so that I can get on with my life. I don't mind having pain just as long as I know why and so that I can continue to live,
At the moment, I feel worse than the only person in the world who has diabetes, because if doctors don't believe me, how possibly can I get a friend to believe me?
My mum looks tired.
I hate that I have these aches and pains in my knuckles, wrists, knees, fingers.
It makes me angry when doctors tell me that I can't jump on my trampoline.
I don't mind what exercises I have to do, what tests I have to have, what medication I have to swallow, I just want to feel like me again.
I'm lost at the moment. It feels a bit like when you tell someone that you have type 1 diabetes, and they say, "Oh, my grandmother has that, she just takes tablets and pricks her finger a few types a week." It's not the same at all. Pain isn't a competition.
Whatever is wrong with me, I'm not going to let it change or destroy me, I just need the right doctor to fight for me,
I feel sicker Diabetes wise, I feel sluggish and tired and have no energy-and that's exactly the way I fell if I have had a hyperglyaemic attack.
Diabetes didn't used to bother me. Now I feel sick from it, and sick from the pain.
I can't do the things I like anymore, because I have not much energy. I don't like food as much as I used to either.
I get temperatures at night.
It's hard for me to concentrate on my schoolwork, when last year I got best marks.
I have rung Kids Help Line twice to speak to them about how bad the doctors treat Mum and me and also with my pain. My Mum wrote the number down in special book in case I wanted to vent to someone else besides her.
My pain at night-time is so bad that it's almost impossible to distract myself from it-I listen to CDS, my MP3, my Mum reads me books in accents, we do meditations, relaxation techniques, but all i can see are big hammers pounding away at my legs, lava oozing from my feet, bullets shooting into my feet.
I have seen 5 specialists, and in soime way, they have all made me feel like I am looking for attention by talking about my pain. One man asked me if I was having trouble being teased, or if having my Dad not live with us upset me. I knew what he meant. No, my pain is real. Im not trying to cover it up to hide other problems.
My Mum and me are very close, she knows just by looking at me if I am low and nned a snack, or if Im starting to have enough of my pain.
A doctor said that I am too young to take the medication that helps this pain, so therefore, the pain mustnt be real. I stuck up for myself when I heard that.
I cant go to sleep until sometimes 3am in the morning(which means neither can Mum,) because the pain is so strong.
When I wake up, I have no energy.
My blood sugar levels go very high when I am in pain, and I get tired of drinking, going to the toilet, drinking, going to the toilet all night long.


Concluded at 1.10am. Demarco appeared ready to sleep, but his pain was still too high. He finally went to sleep at 3am.

Wednesday, 9 June 2010

A very courageous Mother wants to share here story...

I wish I had known how to use Facebook a year ago. I wish I had known you a year ago. Last July 25th, my 21 year old son died of ketoacidosis. He had been type 1 since he was a baby, 8 months old. No problems until he was 17, when he started to suffer from depression. He was given antidepressants, at 19 he was prescribed cymbalta 120mg(look that one up, he should have started off at 30mg).It changed him completely, but thankfully he realised this for himself,and came off them.
He was never admitted as a child to hospital, but in the four years before he died, he was admitted 9 times with DKA. I begged the Mental Health Team and the Diabetes team to keep him in for longer, to support him more, but they refused every time. Thankfully for justice, I kept all the paperwork, and there is now a police investigation. We were supposed to have his inquest a couple of weeks ago, but there was no statement from anyone in the Diabetes team. Something a bit wrong with that when his cause of death was directly down to his diabetes.
I am sorry you have learnt in such a hard way about diabetes problems, but congratulate you on all the work and support you are giving to others. My husband and my elder son also have type 1(my elder son also has Downs Syndrome, and his behaviour sometimes complicates the Diabetes needs), so I watch all diabetes issues with interest, but can'd find the energy to really be interested in life. I am so angry that Rhys was let down by the people who should have helped him.

Dear Lee,
Sorry I didn't get back to you yesterday.
Yes, of course you can tell Rhys's story if you think it will help.
Rhys used to take the Diabetes in his stride when he was small. Never had a day off school except for diabetic appointments, until he was about 14, very responsible for himself.
He went to school adventure camps, Diabetes UK holidays, he belonged to a group for brothers and sisters of children with special needs(as his brother has Downs Syndrome), and they went youth hostelling, and several adventure holidays. Only once was there ever a problem with his Diabetes, and that was when he was about 17.
Right until he died,if he was up in the mornings before us, he fed our two dogs and made me tea,he was a really caring person all his life.
Swimming, canoeing, horseriding, paintballing etc, he loved them all.
He just needed support to get through the awful depression, that caused him to harm himself through diet.
You can tell his story wherever you think it may help.

Tuesday, 8 June 2010

The pump

Man problems......

The blog for me has always been an honest way of sharing the reality of my issues.. and one of those is not being able to hold an erection.... so if you dont wanna know about my "man problem" then turn your eyes now......................
I havent been able to keep it up.. without a some help for 3 or so years now... and i am sure i am not the only man to read this that has the same problem as its a part of diabetes... but more so because i have neuropathy too....i tried the Blue pill(viagra) didnt work for me and another one....in the end i was given an drug called Caverjet... which i have to inject into the bottom of my weee willy winky when i want to play chess lol.... which i am sure as you can imagine isnt the sexiest of things to do at the best of times... and does not always work.... when it does...ahem..it does...and well... yes... but it doesnt always take.... you can inject it in the wrong place or whatever.... i dont knowi aint a doctor..... but as a man.. and all you men know what i mean... your winky is you life lol..... and if he aint working properly it does make you feel less of a man..... but i do have to smile about it though... otherwise i would cry.. alot lol.... so if this motivates you men to keep on top of your diabetes.. then great... think of your winky next time you miss an injection or decide that you are not going to bother about your diabetes, so if its not the numb feet/legs..pain like you have never felt before .....constipation/diahorria... uncontrolable sweats.. dizzyness...then think of the WILLY... !!!!!!!!!!!!!!!!!and bext time you are in the heat of passion... do you want to stop... mix a solution... draw the needle... inject your willy.. and then hope for it to take.......

another day.,,,,,, another fight......

i wake sometimes with a spring in my step.... and sometimes i just wake and wonder why...i have had emails from Diabetes Uk which i am dealing with..... i better watch what i say though as last time i put something on here... the post was thrown back at me by a member of staff..... ooooooooo......sometimes my GOB says things that dont come out the way its meant too....will i ever learn....
Anyway on a slighlty brighter note lol... the challenge is next week.... havei trained enough....nooooo.... do i care ....noooooooo lol.. its not a race.... phil is dressing in drag... i cant wait to see that lol.... gotta see what i am gonna wear yet lol....
quite a few people coming down to support us.. am really looking forward to meeting Claudia though.... no doubt a tear or ten will be shed somewhere along the way ...;)

Monday, 7 June 2010

3 years on......

Its been quite the rollercoaster..... 3 years of frustration....HELL...i really do finally feel at peace.. and when i say that.. i mean the fact i dont feel alone now.. and by that i dont mean i have been alone.. as my family have been amazing... with my moods... ups and downs and have always been there.... i mean with the fact that i dont feel that i am the only person with this that feels like i do...the documentary has opened so many doors for me and introduced me to some of the most amazing inspirational people i have ever met/spoken to.... its hard to put into words how i feel.. but i have the bounce back in my step... the other day i had a hypo.. went on facebook and got talking to Bec.. her sugars were high ... which to me is just asa bad... we had a bit of banter... took my mind off it... and got me through it.. the depression factor to it being 3am in the morning and me feeling sorry for myself went.. i was not alone... the challenge is coming soon and the support i have received around that has been ...well it has brought a tear to my eye... more than once!...
I have also found a life long friend in Angela Allison... She has helped me in more ways than she will ever know... the wheelchair for the challenge has been down to her and Donald her husband who i owe more than one beer to.... but the understanding...every post.. every email... every chat we have.. its like me talking to the mirror... what she does daily with 5 children.. it amazes me... and puts it all in perspective... we can all take a lesson out of her book... she has started a blog.. if you havent read it yet... do so...smiles and cries guaranteed....

Looking at Angela has also made me realise how much i owe my own Mom to as well.... i have said it before but if it werent for my Mom visiting me everyday, twice a day in hopsital .... well i really dont know what would have happened... sometimes i think i took that for granted as she is my Mom and thats what Moms do.... but not all Moms would have done that... and continue to show me support in ALL that i do... no matter how daft i can be sometimes...

And then there is Jo.......i adore you... your smile... your beauty... your wit....every day is a happy day...(put the crystal ball away you numpty) xxx;)

And to everyone else... every single comment ,, every single email.... every link shared motivates me.... and makes me get up in the morning.. hoping to make a difference to everyone with diabetes now and for the future...(well you gotta aim high i say).....