Diabetic Neuropathy whats it all about hey!: Have your say

Monday, February 20, 2012

Have your say

It is not very often that you get to sit in a room with the people that run your life.... Every quarter or so i get invited to a meeting with the top bods in the NHS who have a say in how our diabetes is run..... So have your say.... Let me know your issues and I will put it across !

1 comments:

creekmoorchris said...: Our 19 year old daughter was dignosed with type 1 diabetes 18months ago, unfortunaately 5 weeks afterwards she began to get alot of pain in her feet.

This was diagnosed as insulin neuritis, which few people seem to understand.

She has been on multiple medications with limited effect.

She rarely sleeps through the night waking herself in pain and shaking.

Recently she has had to leave university due to the pain and inability to walk and remain on her feet.

Since she has been home she found a job she loved and had to give up due to the pain again.

I am really looking for someone who understands this diagnosis and can help - We will take her anywhere.; March 17, 2012 11:02 AM

What happened

Summer 2003 started to lose weight... i remember slowly losing weight and was nearly a 36 waist...this fell to a 32 within a couple of months..
at this time i left my wife and was working long hours at a new job.. i put the weight loss down to stress and not eating
drinking lots aways thristy, started to get thrush as well... didnt go to the docs as i was embarrsed.. i didnt know what it was
this carried on for a while about a year or so i was run down, the thirst was not as bad.. the weight loss had stopped but i was not putting weight on.. still had the thrush though... i moved around a bit always drinking and going out so again put the tiredness and weight down to this..
2004-jan 2007.... i had started a new job doing 4 days on 4 off... doing 12 hour days.. i was always very tired... thirtsy... but again put it down to work and ebinga single man not eating properly... i had noticed my feet hurting a bit tingles, and sore.. again i did not go to the docs.. i was drinking quite heavily at this point as well...i had also started to lose a bit more weight at this point... did not know why but i was now thinking of going to teh doctor as i knew there was something wrong... yes i know.. why did i not go before.,... well i just did not like doctors... a rash cash up on my leg.. scabbed over and took up alot of my shin... was not healing....
jan-may 2007.... very very tired... went down to a 28 waist.... very very thirsty,, getting diahorria... heart palputations... feet really hurting... not sleeping very well... thrush was bad.. very sore and finding it hard to get an erection.... noticed my skin was not healing as quick as normal..i had a boil come up on my leg... no very nice.. very painful... i started to feel very poorly... had another boil come up... and another.... and a cut on my leg from something else had started to become infested... i had a day off work... my flat mate got some lucazade which i was drinking like there was no tomorrow... all day trying to get my energy back... this was not working..
i started to hyperventilate.. could not get my breath.. started to panic... could not control it... so i had to call an ambulance.. still not breathing very well... i remember a doctor saying something about diabetes... and someoen putting something into my penis... and an iv into my neck... and other drips into my arm... then kinda passed out... was in itensive care for the night.. my first time over night in hospital... scared very tired and not knowing really what was going on...
may 2007 diagnosed with type 1 diabetes...
june went back to birmingham to stay with my folks...
i was suffering pain like i had never felt before... this started a day after i came out if hospital...
i was finding it hard to pee... my body was shaking uncontrolably.. could not sleep... did not know what was going on very scared..
went to the docs... said i had flu..
gave paracetamol.. still in pain
called nhs direct no help
went to a doc out if hours,,, told it could be an intolernce to the insulin
went to A&E told there was nothing wrong with me
Went again... told i would be put on the out patients list to see someone.... but by this time the pain was so unbearable.... aching/electric shocks/shaking/pain all over my body... could not sleep.... it was like being in hell...
i went to to hospital again in an ambulance... i had a pain in my side...they thought i had gall bladder problems.. after a week of tests they realised that this wa not the case and i was put in a general ward. I have later found out that there has been a few cases where operations have taken place to find that there was no problem, i had a licky escape.
In the general ward i started to holusinate, seeing things that werent there, i lost the abiltiy to walk, one day in the shower i just dropped to the floor, i could not pee properly and my bowels were blocked to. Everything had all gone wrong my world turned upside down, could not walk extreme pain, diabetic all my dignity had gone, i was wearing an adult nappy as i had messed the bed a few times, i could feel no one was believing me, as you cant see the pain. I had several tests, cant really remember what they were, MRI and other ones but no joy, still the weird guy in teh corner who keeps shouting at the nurses, falling out of bed and apparently in pain.
I was then taken to a neurological ward where even on my 1st hour up there i was having a weird episode, where i thought i was being having sort of test to see if i was good enough to be there, so when the docs came to see me i burst out crying asking if i had ast the test.mmmm the nutter had arrived!..i again had various tests.. and again no joy.. and more funny turns... i had the security called at one point.. and pulled out my own cathator.. thinking it was the nurses that had done this!!!... one of the consultants then had a test that needed to be done at another hospital, it was a nerve biopsy, i had been in hospital now for about 3 weeks or so in birmingham and about 3 or so in bromley kent, i was transfered to The queen elizabeth where a biopsy was done and it confirmed that i had neuropathy. No body that i can recall really went through what this fully meant. i had access to teh internet on the tv so there is where i began to use teh interent how to research whar the condition was all about...
I was using a pshyio to learn to walk again, i had ben shown how to self cathatorise as i could not pee, i was dizzy when i stood as my blood pressure was affected. My hands were in pain, parts of my face were tingling and of course my feet were numb.
I was discharged from hospital.. under the supervision of my GP...
I had a condition that had turned my life upside down...i had nmb feet and legs, i could not pee properly, i could not walk properly, i had no specialist help. i wa angry, upset and did not know what to do. I kept hearing this cant be related to diabetes, i have never seen this before in early onset diabetes, i was having to tell the same story time and time again.
WHY DO DOCTORS NEVER READ YOUR NOTES....The question so how can i help you today then Mr Nevitt always got my back up, when they had sent a letter to see you, my notes were sitting infront of them. Surely they had the idea of at least having a peek inside the file?..
This continues to this day August 2009 i am in Bournemouth and the docs have been good here as i am on the insulin pump but the tests still continue and amd still tryong to find a way of living a normal ish life. The interent still remains my way of finding out about my condition... i started my blog first as a type of therapy, and now a way of helping others and trying to rasie the awareness of it all.
What if i werent outspoken?
what if i did not have the internet?
what if i did not have such a great support network?
what is there out there in the community for others like me?
why is there not enough known about this?
how can we raise awareness of this?

Diabetic Neuropathy whats it all about hey!

Monday, February 20, 2012

Have your say

1 comments:

My story In MENS HEALTH.CO.UK

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