Diabetes Wise

Changing Buses at The Elephant

Travelling on London's public transport in the 35 degree heat we had last week is not fun. None of London Transport - with the exception of a few of the modernised suburban rail links - is air conditioned. The tube in particular is a nightmare. Would I be being too graphic if I described being packed in like a sardine with your nose in some unknown sweaty commuter's armpit, and the risk of getting stuck in a tunnel at any time? Probably, so I'll gloss over it. But that is why I choose to travel by bus in the summer as often as possible.

But then, so does half of London.

And changing buses at the The Elephant is bad enough at the best of times.

For starters, seven different routes use my stop. There are so many chances to miss the bus I need: It flies past a line of those already stopped, not realising I want to get on; it stops right at the back of a long line of waiting buses and pulls away before I've reached it; oh, and half the other people at that stop want my bus too, and there simply isn't room for all of us.

Changing buses at The Elephant in 35 degree heat whilst on crutches is particularly bad.

Changing buses at The Elephant in 35 degree heat whilst on crutches and hypoglycaemic is impossible. It's a proven fact.

And you know, sitting down on London's pavements isn't a good idea. I love London, but you only have to visit any other city in the world to realise how dirty it is. Yes, especially The Elephant - if you visited the link above, don't be fooled,  it is currently little more than a giant tatty roundabout, with a hideous red shopping centre at its heart.

Perhaps I looked a peculiar site sitting there with the Guardian periodically wailing like a banshee and tears of frustration - at being low again, at being unable to accomplish the simple task of getting on a bus to go home - streaming down my face, throwing the contents of my bag into a heap in a desperate search for glucose tablets.

The only good thing about The Elephant is that anything goes.

So I'm sure nobody really batted an eyelid.

Adventures in Hospital

Diabetes-wise my recent hospital stay was interesting.

I slipped back into a cycle of intractable lows, some causing seizures. On admission I was wearing the Guardian RT with a four day old sensor. Since the sensors need to be refrigerated, I obviously didn't have a spare with me. Given the shaky state of my diabetes control, given that severe vertigo and photophobia made it impossible for me to test my own blood sugars or read my pump screens, and that relying on hospital staff the test my blood sugar frequently enough made me feel uneasy, I wasn't going to take it off. I was grateful to the descending tone that accompanies low alerts to warn me of appraoaching problems without me having to even look at the monitor. I was grateful for the warning it gave me to ask for help when I needed it. I managed to make the sensor last 11 days, and only took it of at that point because I was having an MRI scan.

I was blessed with a couple of great nurses, who I quickly trained to read the numbers off the Guardian to me, and I was even able to talk one of them, from memory, through programming boluses and basal changes on my pump. He listened carefully - wanted to learn and help me make it work. He gave me all the time it needed.

Some of the staff were not so great. None quite match up to the idiot nurse I had when recovering from my ankle surgery in June who refused to give me glucose powder dissolved in water when I had a blood sugar of 2 (36) because "you're diabetic and sugar is bad for you. It will kill you." I kid you not. Yet he was quite happy to give me other things which contained sugar and went on tell me that he had a degree and knew what he was talking about. I retorted that I have two degrees and in future would he not call be by my first name but address me as Dr. follwed by last name (a title I am legally entitled to use, although in practice rarely do). That eventually shut him up.

This time around was not quite so bad, but almost.

On my last night in hospital, a night that I hadn't wanted to stay, but had been coerced into doing so by my diabetes consultant I was utterly exhausted. If there is one thing a hospital stay isn't, it's restful. I was relying on staff to check my blood sugar every two hours as requested by my consultant.

It didn't happen.

The last check performed was at midnight, which as around 4 (72). No one woke me and told me that or suggested that I eat a snack.

I woke with a pounding headache at 6.30am and checked the blood glucose log sheet to find that no tests had been done. A quick test with my own meter revealed 2.1 (36)

This is where it gets good.

I called a nurse and told her the number. She dutifully wrote it down and turned to walk away.

"Erm... I need some glucose." I said

"Oh. You want some Lucozade."

This was hardly a matter of want. This was definitely a matter of need.

She reappeared a few minutes later. "We've run out."

"OOO...Kay. Could I just have some sugar in water, or some glucose gel or something?"

"Hold on."

A couple of minutes later she's eventually back with a tube of glucose gel, which I swallow. Ten minutes later my blood sugar is cruising back up and I pull the sheet over my head and go back to sleep.

It seemed this little event had at least alerted everyone to the fact that they'd forgotten to check on me through the night. Around 45 minutes later someone was shaking me awake.

"Caroline... Caroline. We've got you some hot chocolate. You've got to drink it."

I thought I was in some weird dream. At half past seven in the morning this strange person is leaning over me with a small cardboard cup of steaming chocolate telling me that I must drink it. I was having trouble making that compute.

It turns out that on re-testing my blood sugar as I slept, they'd found it had dropped back down. Now out of not only Lucozade but also glucose gel, their solution to the problem was to make me drink hot chocolate.

What?

There were many more sensible solutions to this. Borrowing Lucozade or glucose from a neighbouring ward, dissolving sugar in water or even just bringing me my breakfast which was due round pretty soon anyway.

But hot chocolate?

One of those small cups has around 5g of carbs in in. It is boiling hot, necessitating at least a ten minute wait until you can drink it, and when you finally do the fat in there retards the absorption of the meagre carbs anyway.

Even a little hypoglycaemic I could work this out. And I was stunned.

Later that morning when my consultant paid me a visit, I guess I took it out on him.

He's a lovely guy. In fact he has only just become a consultant, and I have known him for a long time wile he was still training. I have a lot of respect for him.

"I would have been a whole lot better off at home last night" I said. "I can give you a list of reasons why."

I told him about the failure to check my sugars. How if I had been at home I would have had the benefit of the Guardian RT alarms, plus setting my alarm clock myself for every couple of hours. I told him how I would have had several sources of glucose, plus long acting carbs available. How I could have eaten a bedtime snack. I told him how being able to eat decent food - food that I wanted, when I wanted it - might be very helpful in preventing these lows anyway. I told him how I would scream if one more member of staff referred to my pump as a sliding scale, and asked me when I would be coming off it - as if returning to injections signified something good. I told him the bottom line: now past the acute illness, I would feel safer at home.

He listened very patiently. Let me tell it all to him.

Then he thanked me.

He thanked me for highlighting that there was still a huge misunderstanding about pumps within the hospital. He thanked me for bringing the ridiculous hypo treatment protocols to light. He agreed that it simply wasn't good enough. He even said it would be better if the hospital was able to get RT sensors for patients who come in wearing the RT, even though they are currently rare. He agreed the RT was good for me right now, which is a breakthrough where it is still largely greeted with scepticism. He took out a piece of paper and carefully listed the concerns.

He promised to address them. To try and make something change. So that if I return, I might feel a little bit safer in my bed.

I know he faces a huge task to try and effect change, and I won't be surprised if it doesn't happen. But his willingness is what counts. The fact that he always listens, treats me like an equal even when I'm losing it with frustration about diabetes and doesn't judge me for it.

That is what I call a star. I just hope he knows that I think that.

 

Home From Hospital; Or is Hospital Becoming My Home?

I think the title says a lot.

Maybe the details don't really matter.

Or at least the details of what happened to earn me another nine day stay in hospital. Suffice it to say I was very ill.

The deatils of how I feel about it?

I guess they matter to me.

I'm frustrated by my continual ability to succumb to illness, to completely lose control and to need to depend on others to fix it for me. I'm frustrated with a body that keeps letting me down and making this happen.

I know.

It's not my fault.

There is nothing I could have done to manage this alone, or to prevent it from happening.

But that doesn't make me any less depressed about the whole thing.

Guardian Angel

Last week  may have been a nightmare in many ways but it did, at least, have a positive ending.

Thanks to the unbelieveable generosity of an acquaintance I met at a London meeting of members of Insulin Pumpers UK, since about one hour after after my discharge from hospital last Friday evening, I have been watched over by a Guardian: A Guardian RT.

After a week of intractable hypoglycaemia and being reduced to the point where I've lost all hypo signs, nevermind warning signs - I'm currently concious or I'm not, that is the only distinction - it is great to have an extra pair of eyes watching my blood sugars.

It is fantastic to have some additional piece of mind.

Best of all it is great that I have so quickly become abe to trust the RT where Low Alerts are concerned. With  very conservatively set alert level, it hasn't missed one yet and I am now able to catch up on much needed sleep to combat the fatigue caused by a combination of Addison's itself and time in hospital, without having to set my alarm for every 90 minutes just to check I haven't dropped below 2 again.

Right now, this was just what I needed.

For the record: I have not deprived anyone else of their monitor - the lady concerned has just upgraded to a 522. And the other good thing? I'm able to get the sensors from the US at $40 a pop - roughly £22. The UK price is £52 - roughly $95. The prohibitive cost of the sensors is the main reason I can't currently get my own Guardian RT, or consider the 522/722 as an option when it is released here soon.

The biggest drawback: I'm going to miss this thing when I have to give it back.

A Free Gift

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.

7th of July

I'll always remember where I was when I heard. And how I felt.

I'll always remember the frantic phone calls, the quest for information, the need to know that everyone I care about was safe.

I'll always remember how it felt to travel on the tube the followig day. The same but, somehow, completely changed..

I'll always remember standing in Tavistock Square. The image of that bus will be forever seared into my mind.

But most of all I will always remember the victims: the dead, the injured, their friends and loved ones and the emergency staff who dealt with the aftermath.

And, finally, I'll be forever grateful for the timing of my own travel to Russell Square.

We're just one year on, but London will never forget.