Finding the chase and cutting to it

In the UK, type 1 diabetes is recognised as a disability in terms employment law.

When my blood sugar is normal and predictable, this seems a little heavy handed.  By colleagues, I have been given a look to say you must be joking.  It’s all in your control and it doesn’t need protection under law.

I love this post, which  introduces the idea of type 1s embracing the disabled term.

With medication, though, you’re normal

We should talk about the medication in a bit.

This introduction from, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3867999/, states what we’re dealing with:

“The plight of people with type 1 diabetes changed dramatically with the introduction of insulin therapy in 1922 (1). Type 1 diabetes was transformed from a uniformly fatal disease in the preinsulin era, with mortality occurring either acutely from diabetic ketoacidosis or subsequently from inanition owing to a chronic catabolic state, to a chronic degenerative disease. In the first 15 to 20 years of insulin therapy, a host of complications that had never been seen before was discovered in people with long-term diabetes (2). These complications, affecting the eyes, kidneys, and peripheral nervous system, were collectively called microvascular complications, to distinguish them from the less diabetes-specific but highly prevalent macrovascular disease complications. Microvascular disease and peripheral neuropathy resulted in blindness, kidney failure, and amputations (3); and macrovascular disease, exacerbated by renal dysfunction and autonomic neuropathy, increased the risk for myocardial infarctions and stroke to levels that were 10-fold or more than in the age-matched nondiabetic population (2,3).”

Type 1 Diabetics produce no insulin, so our blood sugars, without treatment, cannot fall in the euglycemia or normal blood sugar range, which is 70 to 130 mg/dl or 3.8mmol/l and 7.2mmol/l.  Above this range is call hyperglycaemia (anything above 7.3mmol/l) and below it is called hypoglycaemia (below (3.8mmol/l).  With a mix of CGMS and insulin pumps, type 1s are meeting that normal range: I’m not quite there, I pretty reliably keep my blood sugar between 4mmol/l and 10mmol/l, 80% of the time.  That gives me a glaciated haemoglobin reading of between 6.2% and 7.5%.

I have an autoimmune disease.  It has these consequences:

1. I am on my fifth type of insulin.  For various reasons but mostly because the insulin produced by human beings will only last for 10 minutes or so before it breaks down.  I have been on bovine insulin, porcine insulin, “human” insulin and finally I’m on an analogue (think left handed sugar).
   After a while, the insulin stops working as well.  Probably because my body starts attacking it.
2. I went through the menopause, completely, at 37.  I am now on HRT because the stress of it caused may background insulin requirements to be 4 times what they had been before I stopped producing oestrogen and progesterone.  I had an evens chance of that happening because I was diagnosed before the age of 5.
3. I have a 13% chance of diabetic retinopathy despite my blood sugars largely being normal.  if they were not normal, I would have a 87% chance of that developing.  The diabetic complications control trial in 1993 demonstrated the benefits of good blood sugar control.
4. Sleep patterns.  I talk about my ability to sleep when my blood is above 8mmol/l.  I find it really difficult and I am not the only one.  If my blood sugar is around 6mmol/l before I go to sleep I tend to sleep well, if it stays that way.
   If my cannula gets blocked, or I’m stressed about something, or there’s a knot in my pump, my blood sugar can rise dramatically.   I tend to wake up at 9mmol/l.
   A hypo can also wake me up.  Above 3.7, I tend to treat with a temporary reduction in my basal rate (70% instead of 100% works really well), otherwise I treat with 150ml can of coca-cola if above 3mmol/l or 250ml if I am below that.
   I try not to give glucagon unless I am below 1.7mmol/l, but that is by far the easiest way to bring it up even if it makes me feel sick and not like sleeping.
   Some diabetics talk about their diabetes as if it were a small baby.  It demands attention late at night and won’t rest until it’s done.
   If I’m above 12.3mmol/l, I have to wait nearly 2 hours for it to drop low enough for me to be able to sleep.  I try to test before 10, so I can guarantee that by midnight I can sleep.
5. Friends and lovers: people do not like being round sick people.  We’re not considered fun, clever or energetic.  At times we’re not.
   It’s 24/7 every day.  No breaks, no remission, there are easier times but there are also crippling bad times.  There are times when my blood sugar can climb (bad site, bad cannula, bad tube, bad insulin, infection, stress, got my bolus wrong, forgot to bolus…) and I haven’t spotted it quickly enough and I am now bringing my sugar down from 20+mmol/l at 2am and it won’t come down.  For whatever reason, the insulin just isn’t doing what it should.
   I can pass for normal if I really want to but I always think that’s mean.   If anything goes pear shaped, that would be a bit of a shock.
6. Work: assumptions are weird.  What do you need?  I don’t know.  If I knew, actually I wouldn’t need it because I would know what was coming and I could model it correctly and get my blood sugar perfect.  The pump gives me a lot of flexibility but it is much less tolerant if insulin is interrupted for any reason.
   I’ve had long acting insulin injections fail, but only a couple and some of the insulin from the injection before were still active in my system.  When a cannula fails, the consequences are much more dramatic.
   I’ve gone home with normal blood sugar and been fighting highs or lows less than four hours later.  Then I’m at work with fair less than my planned 6 hours sleep to do my job the next day.
   One manager asked me for consistency.  I’d love that!  My condition is not a consistent entity and the impact is not consistent!

I’ve busted 1000 words so I am stopping for a breather.