Demarco's thoughts about pain.
9 July 2009. 12.30am.
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.