Saturday 27 November 2010

Remembering the child you used to have.......

I remember in the first week after Samuel was diagnosed the diabetic nurse sat in my living room telling me that some parents have a period of time where they are 'mourning' the 'loss' of the child that they once had. At the time I remember thinking that that statement seemed very extreme. Samuel was still with us, we hadn't lost him, he was the same 4 1/2 year old that he was the previous week.

However, as time goes on, and gets a little bit older, has the odd bad day when he doesn't 'want' to be diabetic, I do find myself thinking 'what if' or 'if only.' I think it is only natural. As a mother I would give anything to take it away from him, who wouldn't?
I know that I can't do anything about it and this is Samuel now, but I do sometimes look at him and think of the Samuel that he was.......
The one, who with two of his sisters sat on the sofa, under the covers eating their body weight in biscuits when they thought we weren't looking. The one who could have the bag of crisps just because he fancied them, and it didn't matter what the time was. The one that could have the sweets that his friend took into school because it was their birthday.
The one who didn't feel tired and unwell because his sugars are low, or bad tempered and can't concentrate because they are high. Or the one who didn't have a care in the world and could enjoy being a child.

Actually, Samuel can enjoy being a child because we do the worrying for him, we do our very best at  levelling his sugar levels so he doesn't feel poorly, and we try to treat him the same as his sisters. He probably won't remember much about his life before diabetes reared its ugly head, but we do. We were obviously chosen for a reason that as yet we don't know, we just have to get on with it.

So, when you sit down and think about it, I don't need to 'mourn' the 'loss' of the Samuel I once had, because he is still with me, and actually is pretty amazing the way he is, the same as his sisters.

Wednesday 24 November 2010

It could be worse......it's only diabetes.....

These are the dreaded words that parents of diabetic children don't want to hear, and do you know what, when Samuel was first diagnosed I said them myself, and I do sometimes still find myself saying them.

Yes, it could be worse, it could be so much worse. I have a friend who's son has muscular dystrophy, and my heart breaks for them, as he is friends with my daughter and we have known them for about five years. You watch the children in the Great Ormond Street Advert advert, asking for you to donate money each month so that the hospital can carry on its great work to save the children, and yes there are children suffering horrific abuse, injuries and diseases.

But .......Type 1 diabetes is no walk in the park!

This is what diabetes is for us:
  • At least four injections a day,
  • At the very least six finger prick blood tests a day,
  • Hospital appointments every two months, seeing not only the consultant, but the diabetic nurses, the dietitians and the psychologists.
  • The yearly review,
  • The carb counting every meal he eats,
  • The working out the insulin dose using the carb ratios,
  • The good carbs, bad carbs, fast carbs, slow carbs, low GI, high GI
  • The high sugar levels, the low sugar levels, ketones, DKA
  • The constant watching for hypo signs,
  • The constant worry that they may not wake up in the morning, because of dead in bed syndrome,
  • The fact that just because they are  diabetic their life expectancy is reduced by 15-20 years.
  • Its sharps bins, needles, care plans and hypo boxes.
  • Its not being able to go to a friends house for tea, or a sleepover,
  • Its the nightmare of trying to carb count party food.
  • Its growth spurts, the common cold, a stressful day at school.
  • Its sick day rules
It never stops, it never goes away.......
But its ok........It could be worse......Its only diabetes.....

Tuesday 9 November 2010

November is diabetes awareness month.....30 facts for 30 days

Novemeber is diabetes awareness month, with November 14th being World Diabetes Day.

JDRF are posting 30 facts for 30 days. This means that every day in November they will post a different fact about type 1 diabetes everyday. You can pick up these facts via their facebook page, http://www.jdrf1campaign.org.uk/page.asp?section=91&sectionTitle=30+facts+for+30+days  but if you don't have facebook I will also post them here.

  1. Type 1 diabetes is a chronic, lifethreatening condition which has a lifelong impact of those diagnosed and their families.
  2. Unlike type 2 diabetes, type 1 diabetes is not linked to being overweight, lack of exercise or other lifestyle factors.
  3. Type 1 diabetes affects 350,000 people in the UK, enough to fill Wembley Stadium almost four times over.
  4. Type 1 diabetes oftene strikes in childhood. It stays with people for the rest of their lives.
  5. Type 1 diabetes happens because the body's own immune system attacks cells in the pancreas that produce insulin.
  6. Type 1 diabetes is noone's fault. It can happen to anyone and is not caused by anything they or their parents did or didn't do.
  7. Over 25,000 children in the UK have type 1 diabetes - you would need 48 jumbo jets to take them all on holiday to America.
  8. People with type 1 rely on insulin injections / infusions and up to 10-12 finger prick tests every day just to stay alive.
  9. Incidence of type 1 diabetes is increasing by about 4% each year, and more quickly in children under five.
  10. Type 1 diabetes is 50 to 60 times more common in under 18s than type 2 diabetes.
  11. On average the life expectancy of a person with type 1 diabetes is shortened by 15-20 years.
  12. Insulin pumps can help improve quality of life for people with type 1. But only about 4% of people with type 1 diabetes in the UK currently use insulin pumps, one of the lowest rates of pump therapy in any developed nation. 
  13. People with type 1 diabetes in Blackburn (17%) are 42 times more likely to get a pump than people in Luton (0.4%).
  14. 14 November is World Diabetes Day. On this day seven people in the UK will be diagnosed with type 1 diabetes.
  15. The peak age for diagnosis of type 1 diabetes in the UK is 10-14 years but is becoming younger
  16. Incidence of type 1 diabetes has increased five - fold in the under five group in the last 20 years.
  17. Half of people with type 1 diabetes in the UK are diagnosed under the age of 15 and 90% are diagnosed by 30.
  18. Common signs of type 1 diabetes are thirst, frequent urination, tiredness, weight loss, ketones (pear drop smell on breath).
  19. Worldwise, 70,000 children (aged 14 and under) develop type 1 diabetes each year.
  20. Finland has the highest rate of type 1 diabetes in the world.
  21. Type 1 diabetes is 30 times more common in Scandinavia than in Japan, which has one of the lowest rates of the condition globally.
  22. 85% of people who develop type 1 diabetes have no relative with it. However, genetic factors pre-dispose people to developing it.
  23. Today we know of more than 50 genes that are associated with the risk of developing type 1 diabetes.
  24. More men have type 1 diabetes in Scotland compared with women - 56.1% compared with 43.9%
  25. 20 years after diagnosis, nearly all people with type 1 diabetes will have some evidence of retinopathy.
  26. Long term complications of type 1 diabetes include heart disease, stroke, blindness, kidney failure and limb amputation.
  27. There are very few foods that someone with type 1 diabetes cannot eat and no special foods are required.
  28. An hour of research into type 1 diabetes costs around £60. Every bit of research brings us a step closer to finding a cure.
  29. The incidence of type 1 diabetes in the UK has doubled every 20 years since 1945.
  30. On a global level JDRF has dedicated over £850 million to research into type 1 diabetes over the past 40 years.
So there you have it some facts that you probaby already knew and some you didn't. JDRF do a fantastic job raising vital funds so that maybe, one day we will have a cure for our children