More than twenty years on, the autoimmunity that gave me diabetes has decided to reward me for my loyalty with a free gift: Addison's Disease
And so ends ten days of nightmares.
It began on Saturday July 1st. England lost to Portugal on penalties in the Quarter finals of the World Cup, but it was still a good day. I'd met a friend after the game for a single drink and something to eat. I was on my way into Whitechapel Tube Station on my way home, probably around 11pm and alone, when the world switched off.
I'd like to tell you what happened, but the truth is simple: I can't because I don't know.
I've filled in some gaps from information given to me by the paramedics. Witnesses said I'd simply stopped, fallen to the floor and started having a seizure. Certainly, I'd bitten my tongue, as I woke up with blood in my mouth and smeared across my face.
The paramedic who attended first tested my blood sugar at 1.2.
1.2 mmol/l
That is 22 mg/dL
A few minutes before, I'd been walking (ok, on crutches) along the street feeling fine.
A few minutes before that I'd given a friend a quick hug and said goodbye.
And perhaps ten minutes before that I'd tested my blood sugar at 6 mmol/l (108) with no insulin active in my system.
It didn't make sense.
Certainly not then, when I came round to a sea of strange faces asking me questions I could neither understand nor respond to. Not a few minutes later as I struggled to articulate simple words on my arrival at the A&E Department of the Royal London Hospital (fortuitously located almost directly opposite Whitechapel Tube.) And it still didn't make any sense to me around half an hour later when the post-glucagon vomiting started.
It still didn't make sense the following morning, when I realised my blood sugar had never at any point, even after Glucagon, been recorded at higher than 6 (108). Overnight I'd had less than a single unit of insulin and still my blood sugar remained within range.
It had been late when I'd arrived at the hospital and I had accepted that I would be better to stay until morning but fully expected to have recovered by then and to go home to figure out the cause of my spectacular low. I didn't expect to feel so absolutely horrific. To be unable to stand up without the room spinning, to feel sick and to have so much unexpected pain from my still plastered ankle.
I've had bad hypos before. I've had seizures before. I've had Glucagon before. But I've never felt this bad afterwards before.
The one consolation seemed to be that I'd been cured of diabetes.
Running basal rates of around -80% (by which I mean 20% or normal ratesl) I was still almost continuously hypoglycaemic. My own Diabetes Specialist Nurse (DSN), who is based at a different hospital, has told me since that the doctor treating me at The Royal London had actually contacted her on that Sunday and asked if I really did have Type 1 Diabetes!
I proved a problem to the diabetes team at The Royal London. They fully admitted to being unfamiliar with pumps, as they don't support pump patients. I've also never been a patient there before, and they had no idea of my diabetes or general medical history. I wasn't it much of a state to help. Tired, frustrated and permanently hypo despite continuous carb consumption, I just wanted to go home, regardless of what the consequences of doing so might be.
I spent last Monday alternately lying flat to reduce my dizziness, or being violently sick. I had to push the staff to get my plaster cast removed to check for a wound infection, as my whole leg burned with pain. At one point, I had an intravenous dextrose infusion and my pump switched off, yet was still recording blood sugars of less than 4 (72).
By Tuesday my leg had proved to be fine, the vomiting had diminished and I seemed to be able to avoid hypoglycaemia by taking just 0.05 units of insulin per hour (Down from an average basal of 1u/h.) Seemingly out of ideas for what to do to better stabilise me, the team at The Royal London let me go, in order that I could return the following day to my own diabetes team.
I spent Tuesday night waking to the alarm every 90 minutes to check my blood sugar and eat sugar as required. By Wednesday lunchtime I was exhausted and my blood sugar had slid back to 1.6 (29) with no symptoms at all apart from being sick, which had been happening regardless of blood sugar level anyway! I remember clearly lying on my bed trying to swallow tubes of glucose gel without being sick. I remember panicking because I knew I was going to be late for the appointment with my diabetes team, but I don't remember clearly the details of the journey to the hospital, (or, sadly, how I came to lose my Oyster Card)
When I arrived, I sat in the waiting room, resting my head on my knees as the only way to stop the world from turning around me. My name was called by the lab tech who takes bloods, but by the time I'd stood up, she had disappeared. I reached the front of the waiting room before falling forward....
It might seem mad, but when my consultant, seated but stooping to reach eye level with me as I lay on a couch, patiently and compassionately explained they would have to admit me and that there was no way I could go home, I started to cry. As terrible as I felt, I just didn't want to stay in hospital again. But if I'd gone home, who knows what might have happened.
Over the next 24 hours, I got through around 3 litres of Lucozade and 8 tubes of glucose gel, yet my blood sugars, tested hourly by staff, remained steadfastly low. At times I remained below 2 mmol/l (36mg/dL) for several hours at a time. What amazed nursing staff was that I felt exactly the same when my blood sugar was 1.5 as I did when it was 5.5. The same was, unfortunately, terrible, but I definitely had no indications of actually being so low - unsurprisingly I guess.
On Thursday afternoon, the SHO came to see me and explained that, as they'd suspected, my adrenal glands are no longer working correctly. My morning cortisol level that day had been less than 40, where normal is 200-250. Cortisol is a major antagonist to insulin and my persistent hypoglycaemia, as well as my other symptoms, were down to the lack of this hormone.
The SHO touched my arm and asked if I was ok.
I didn't, honestly, know how to answer that question.
I was relieved to have a reason for the way I had been feeling, and for the hypoglycaemia. At least it would be corectable, now we knew what was causing it. And at least Addison's is relatively strightforward to manage.
But who wants another chronic condition? Who wants something else to squeeze onto their medical ID tag, more tablets to take, something else to think about during illness or travelling?
Not me.
Damn you autoimmunity. I didn't want your bonus gift.
The ez-wrap is a piece of plastic that slots on the back of the IR1200, creating a channel between it and the pump. You then wrap the excess tubing around the ez-wrap, sitting in the channel, tuck the pump in your pocket and go. No embarrassing hanging tubes, or sudden door-knob snags.